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| Publications of Melanie J. Bonner :chronological alphabetical combined listing:%% Journal Articles @article{fds371817, Author = {Meyer, R and Wang, K and Yearley, A and Grob, S and Zeitlin, J and Bloomfeld, J and You, M and Lee, D and Bonner, M and Shah, N and Page, K}, Title = {Usability and Acceptability of the QuestLeukemia Mobile Application: A Pilot Study for An Educational and Psychological Intervention for Children with Chronic Illnesses.}, Journal = {J Pediatr Hematol Oncol Nurs}, Volume = {39}, Number = {3}, Pages = {137-142}, Year = {2022}, url = {http://dx.doi.org/10.1177/27527530221068422}, Abstract = {It is widely accepted that educational interventions benefit children with chronic diseases (disease awareness and autonomy) or those undergoing medical procedures (decreased anxiety and improved satisfaction). Hematopoietic cell transplantation (HCT) is an intensive procedure to treat life-threatening diseases but is associated with multiple adverse medical experiences. QuestLeukemia (QuestED, Durham, NC) is a mobile app designed to educate pediatric patients preparing for HCT through age-appropriate videos and quizzes. Here we describe the results of the initial pilot study assessing acceptability and feasibility of QuestLeukemia app. Eligible participants were selected from a convenience sample (inpatient HCT unit and outpatient clinic). Participants spent 30-60 min using the app then completed a survey assessing the app for usability, accessibility, and user satisfaction. Participants identified the app as a useful tool for gaining disease-related knowledge and reported greater autonomy over their disease process. On average, patients indicated that the app was easy to use (M = 4.93), enjoyable (M = 4.79), and comprehensive (M = 4.71). Parents followed similar trends of satisfaction with the app. Pediatric HCT providers likewise reported that the app was easy to use (M = 4.22), enjoyable (M = 4.85), and educationally comprehensive (M = 4.77). The QuestLeukemia mobile application prototype provides an easy, enjoyable, and educational tool for pediatric patients undergoing HCT. This application was well received by patients, parents, and providers. These findings will be used to design future iterations of the game in clinical care.}, Doi = {10.1177/27527530221068422}, Key = {fds371817} } @article{fds358052, Author = {Moya-Mendez, ME and Mueller, DM and Pratt, M and Bonner, M and Elliott, C and Hunanyan, A and Kucera, G and Bock, C and Prange, L and Jasien, J and Keough, K and Shashi, V and McDonald, M and Mikati, MA}, Title = {Early onset severe ATP1A2 epileptic encephalopathy: Clinical characteristics and underlying mutations.}, Journal = {Epilepsy Behav}, Volume = {116}, Pages = {107732}, Year = {2021}, Month = {March}, url = {http://dx.doi.org/10.1016/j.yebeh.2020.107732}, Abstract = {BACKGROUND: ATP1A2 mutations cause hemiplegic migraine with or without epilepsy or acute reversible encephalopathy. Typical onset is in adulthood or older childhood without subsequent severe long-term developmental impairments. AIM: We aimed to describe the manifestations of early onset severe ATP1A2-related epileptic encephalopathy and its underlying mutations in a cohort of seven patients. METHODS: A retrospective chart review of a cohort of seven patients was conducted. Response to open-label memantine therapy, used off-label due to its NMDA receptor antagonist effects, was assessed by the Global Rating Scale of Change (GRSC) and Clinical Global Impression Scale of Improvement (CGI-I) methodologies. Molecular modeling was performed using PyMol program. RESULTS: Patients (age 2.5-20 years) had symptom onset at an early age (6 days-1 year). Seizures were either focal or generalized. Common features were: drug resistance, recurrent status epilepticus, etc., severe developmental delay with episodes of acute severe encephalopathy often with headaches, dystonias, hemiplegias, seizures, and developmental regression. All had variants predicted to be disease causing (p.Ile293Met, p.Glu1000Lys, c.1017+5G>A, p.Leu809Arg, and 3 patients with p.Met813Lys). Modeling revealed that mutations interfered with ATP1A2 ion binding and translocation sites. Memantine, given to five, was tolerated in all (mean treatment: 2.3 years, range 6 weeks-4.8 years) with some improvements reported in all five. CONCLUSIONS: Our observations describe a distinctive clinical profile of seven unrelated probands with early onset severe ATP1A2-related epileptic encephalopathy, provide insights into structure-function relationships of ATP1A2 mutations, and support further studies of NMDAR antagonist therapy in ATP1A2-encephalopathy.}, Doi = {10.1016/j.yebeh.2020.107732}, Key = {fds358052} } @article{fds352041, Author = {Wallace, K and Uchitel, J and Prange, L and Jasien, J and Bonner, M and D'Alli, R and Maslow, G and Mikati, MA}, Title = {Characterization of Severe and Extreme Behavioral Problems in Patients With Alternating Hemiplegia of Childhood.}, Journal = {Pediatr Neurol}, Volume = {111}, Pages = {5-12}, Year = {2020}, Month = {October}, url = {http://dx.doi.org/10.1016/j.pediatrneurol.2020.06.012}, Abstract = {BACKGROUND: Alternating hemiplegia of childhood often manifests severe or extreme behavioral problems, the nature of which remains to be fully characterized. METHODS: We analyzed 39 consecutive patients with alternating hemiplegia of childhood for occurrence of behavioral problems and categorized those by severity: mild (not requiring intervention), moderate (requiring intervention but no risk), severe (minor risk to self, others, or both), and extreme (major risk). We then analyzed behavioral manifestations, concurrent morbidity, and medication responses in patients with severe or extreme symptoms. RESULTS: Two patients had mild behavioral problems, five moderate, 10 severe, six extreme, and 16 none. Extreme cases exhibited disruptive behaviors escalating to assaults. Triggers, when present, included peer-provocation, low frustration tolerance, limits set by others, and sleep disruption. Reversible psychotic symptoms occurred in two patients: in one triggered by infection and trihexyphenidyl, and in another triggered by sertraline. Of the 16 patients with severe or extreme symptoms, 13 had concurrent neuropsychiatric diagnoses. Occurrence of severe or extreme symptoms did not correlate with age, puberty, severity of intellectual disability, or mutation status (P > 0.05). A multidisciplinary team including mental health professionals comanaged all patients with severe or extreme symptoms with either behavioral therapy, medications, or both. When considering medications prescribed to more than four patients, medicines that demonstrated efficacy or partial efficacy in more than 50% of patients were alpha-adrenergic agonists and selective-serotonin-reuptake-inhibitors. CONCLUSIONS: Patients with alternating hemiplegia of childhood (41%) often experience severe or extreme behavioral problems and, rarely, medication-triggered psychotic symptoms. These observations are consistent with current understanding of underlying alternating hemiplegia of childhood brain pathophysiology. Increasing awareness of these behavioral problems facilitates alternating hemiplegia of childhood management and anticipatory guidance.}, Doi = {10.1016/j.pediatrneurol.2020.06.012}, Key = {fds352041} } @article{fds348709, Author = {Uchitel, J and Abdelnour, E and Boggs, A and Prange, L and Pratt, M and Bonner, M and Jasien, J and Dawson, G and Abrahamsen, T and Mikati, MA}, Title = {Social impairments in alternating hemiplegia of childhood.}, Journal = {Dev Med Child Neurol}, Volume = {62}, Number = {7}, Pages = {820-826}, Year = {2020}, Month = {July}, url = {http://dx.doi.org/10.1111/dmcn.14473}, Abstract = {AIM: To evaluate presence and severity of social impairments in alternating hemiplegia of childhood (AHC) and determine factors that are associated with social impairments. METHOD: This was a retrospective analysis of 34 consecutive patients with AHC (19 females, 15 males; mean age: 9y 7mo, SD 8y 2mo, range 2y 7mo-40y), evaluated with the Social Responsiveness Scale, Second Edition (SRS-2). RESULTS: SRS-2 scores, indicating level of social impairment, were higher than population means (75, SD 14 vs 50, SD 10, p<0.001). Of these, 27 out of 34 had high scores: 23 severe (>76), four moderate (66-76). All subscale domains, including social cognition, social communication, social awareness, social motivation, restricted interests, and repetitive behavior, had abnormal scores compared to population means (p<0.001). High SRS-2 scores were associated with the presence of autism spectrum disorder (ASD) and epilepsy (p=0.01, p=0.04), but not with other scales of AHC disease symptomatology. All nine patients who received formal evaluations for ASD, because they had high SRS-2 scores, were diagnosed with ASD. INTERPRETATION: Most patients with AHC have impaired social skills involving multiple domains. ASD is not uncommon. High SRS-2 scores in patients with AHC support referral to ASD evaluation. Our findings are consistent with current understandings of the pathophysiology of AHC and ASD, both thought to involve GABAergic dysfunction. WHAT THIS PAPER ADDS: Most patients with alternating hemiplegia of childhood (AHC) have impaired social skills involving multiple domains. These impairments are significant compared to population means. Most patients with AHC have high Social Responsiveness Scale, Second Edition (SRS-2) scores. Patients with AHC with high SRS-2 scores are likely to have autism spectrum disorder.}, Doi = {10.1111/dmcn.14473}, Key = {fds348709} } @article{fds349714, Author = {Kuerten, BG and Brotkin, S and Bonner, MJ and Ayuku, DO and Njuguna, F and Taylor, SM and Puffer, ES}, Title = {Psychosocial Burden of Childhood Sickle Cell Disease on Caregivers in Kenya.}, Journal = {Journal of pediatric psychology}, Volume = {45}, Number = {5}, Pages = {561-572}, Year = {2020}, Month = {June}, url = {http://dx.doi.org/10.1093/jpepsy/jsaa021}, Abstract = {<h4>Objectives</h4>To characterize the types and magnitude of psychosocial burden present in caregivers who have a child with sickle cell disease (SCD) in Kenya and to identify predictors of caregiver psychosocial burden, including disease severity and financial hardship.<h4>Methods</h4>Primary caregivers (N = 103) of children aged 1-10 years diagnosed with SCD completed surveys assessing multiple domains of caregiver quality of life (QOL), adjustment to child illness, mental health, and financial hardship. Descriptive statistics characterize psychosocial burden, and linear models assess associations.<h4>Results</h4>On indicators of QOL, caregivers report multiple difficulties across most domains, including daily activities and physical, social, cognitive, and emotional well-being. Daily activities emerged as most burdensome. On indicators of parental adjustment to chronic illness, guilt and worry emerged as the greatest concern, followed by long-term uncertainty and unresolved sorrow and anger; relative to these, they reported higher levels of emotional resources. Financial hardship was high, as caregivers reported moderate to major financial losses due to the time spent caring for their child. General linear model analyses revealed that level of financial hardship was a significant predictor of all negative psychosocial outcomes.<h4>Conclusions</h4>Results document that Kenyan caregivers of children with SCD experience difficulties across multiple domains of functioning and that financial difficulties are likely associated with psychosocial burden. Results can guide intervention development for caregivers of children with SCD in low-resource, global contexts.}, Doi = {10.1093/jpepsy/jsaa021}, Key = {fds349714} } @article{fds347675, Author = {Allen, TM and Anderson, LM and Brotkin, SM and Rothman, JA and Bonner, MJ}, Title = {Computerized cognitive training in pediatric sickle cell disease: A randomized controlled pilot study.}, Journal = {Clinical Practice in Pediatric Psychology}, Volume = {8}, Number = {4}, Pages = {390-401}, Year = {2020}, Month = {January}, url = {http://dx.doi.org/10.1037/cpp0000313}, Abstract = {Objective: The current study assessed the feasibility of a computerized cognitive intervention, Cogmed, in a sample of youth with SCD (ages 8–16 years). If deemed feasible, the secondary aim of the study was to evaluate preliminary efficacy. Methods: Youth with SCD were randomized to a waitlist control or the Cogmed program. Data pertaining to cognitive functioning, psychosocial functioning, and disease characteristics were obtained from participants pre- and postintervention. In addition, data regarding participant interest, consent rate, and intervention compliance were tracked. Results: Eighteen participants (M = 12.2 years old) enrolled in this study. Results indicate that the majority of prospective families approached about the intervention (82%) expressed interest in participating in the study, although less than 25% of interested participants enrolled. Three of 18 consenting participants completed the intervention. Cognitive, medical, and psychosocial factors related to feasibility and compliance were identified. Conclusions: Taken together, the results of this study suggest that there is a high degree of interest for this type of intervention but poor feasibility in practice. Implications and future directions are discussed. (PsycInfo Database Record (c) 2020 APA, all rights reserved)Implications for Impact Statement: Children with sickle cell disease (SCD) have a high risk of neurocognitive impairment, for which there are no interventions supported by research. While the computerized, game-like treatment “Cogmed” has been successfully used with other groups, the current study demonstrated very limited tolerability in youth with SCD. Thus, additional efforts are needed to innovate new cognitive therapies for this unique and in need population of children. (PsycInfo Database Record (c) 2020 APA, all rights reserved)}, Doi = {10.1037/cpp0000313}, Key = {fds347675} } @article{fds346779, Author = {Brotkin, SM and Maslow, GR and Bonner, MJ}, Title = {JPP Student Journal Club Commentary: The Relationship between Parent and Child Distress in Pediatric Cancer.}, Journal = {J Pediatr Psychol}, Volume = {44}, Number = {10}, Pages = {1137-1139}, Year = {2019}, Month = {November}, url = {http://dx.doi.org/10.1093/jpepsy/jsz080}, Doi = {10.1093/jpepsy/jsz080}, Key = {fds346779} } @article{fds344882, Author = {Olivier, TW and Bass, JK and Ashford, JM and Beaulieu, R and Scott, SM and Schreiber, JE and Palmer, S and Mabbott, DJ and Swain, MA and Bonner, M and Boyle, R and Chapeiski, ML and Evankovich, KD and Armstrong, CL and Knight, SJ and Wu, S and Onar-Thomas, A and Gajjar, A and Conklin, HM}, Title = {Cognitive Implications of Ototoxicity in Pediatric Patients With Embryonal Brain Tumors.}, Journal = {J Clin Oncol}, Volume = {37}, Number = {18}, Pages = {1566-1575}, Year = {2019}, Month = {June}, url = {http://dx.doi.org/10.1200/JCO.18.01358}, Abstract = {PURPOSE: Sensorineural hearing loss (SNHL) is associated with intellectual and academic declines in children treated for embryonal brain tumors. This study expands upon existing research by examining core neurocognitive processes that may result in reading difficulties in children with treatment-related ototoxicity. PATIENTS AND METHODS: Prospectively gathered, serial, neuropsychological and audiology data for 260 children and young adults age 3 to 21 years (mean, 9.15 years) enrolled in a multisite research and treatment protocol, which included surgery, risk-adapted craniospinal irradiation (average risk, n = 186; high risk, n = 74), and chemotherapy, were analyzed using linear mixed models. Participants were assessed at baseline and up to 5 years after diagnosis and grouped according to degree of SNHL. Included were 196 children with intact hearing or mild to moderate SNHL (Chang grade 0, 1a, 1b, or 2a) and 64 children with severe SNHL (Chang grade 2b or greater). Performance on eight neurocognitive variables targeting reading outcomes (eg, phonemics, fluency, comprehension) and contributory cognitive processes (eg, working memory, processing speed) was analyzed. RESULTS: Participants with severe SNHL performed significantly worse on all variables compared with children with normal or mild to moderate SNHL (P ≤ .05), except for tasks assessing awareness of sounds and working memory. Controlling for age at diagnosis and risk-adapted craniospinal irradiation dose, performance on the following four variables remained significantly lower for children with severe SNHL: phonemic skills, phonetic decoding, reading comprehension, and speed of information processing (P ≤ .05). CONCLUSION: Children with severe SNHL exhibit greater reading difficulties over time. Specifically, they seem to struggle most with phonological skills and processing speed, which affect higher level skills such as reading comprehension.}, Doi = {10.1200/JCO.18.01358}, Key = {fds344882} } @article{fds343762, Author = {Porter, LS and Baucom, DH and Bonner, M and Linardic, C and Kazak, AE}, Title = {Parenting a child with cancer: a couple-based approach.}, Journal = {Transl Behav Med}, Volume = {9}, Number = {3}, Pages = {504-513}, Year = {2019}, Month = {May}, url = {http://dx.doi.org/10.1093/tbm/ibz016}, Abstract = {Couples co-parenting a child with cancer face significant stressors that can adversely affect their couple relationship. How parents respond as a couple may affect the psychological adjustment of each parent and the child, as well as the ability of the family to cope with the child's illness. The purpose of this study was to assess the feasibility and acceptability of a couple-based intervention for parents of children with cancer. We conducted a randomized pilot intervention study (N = 21 couples randomized with a 2:1 allocation to the couple-based intervention or education control) testing a six-session, telephone-based intervention that trained couples in relationship skills to help them care for their child, strengthen their relationship, and support each other. We examined feasibility and acceptability of the intervention to the parents. In this study, 56% of eligible couples agreed to participate; 82% of randomized couples completed post-intervention surveys, and 62% completed all six sessions. Satisfaction with the intervention was high (mean = 3.3 on a 4-point scale). Changes in both groups were small in magnitude and mixed in direction, with some outcomes favoring the couple-based intervention and other favoring the education condition. Supporting couples is important to optimize individual and parental functioning when a child has cancer. However, there are significant challenges to delivering couple-based interventions to these parents. More research is needed to establish optimal timing and content of couple-based interventions for these parents as well as feasible methods of delivery.}, Doi = {10.1093/tbm/ibz016}, Key = {fds343762} } @article{fds339603, Author = {Jasien, JM and Bonner, M and D'alli, R and Prange, L and Mclean, M and Sachdev, M and Uchitel, J and Ricano, J and Smith, B and Mikati, MA}, Title = {Cognitive, adaptive, and behavioral profiles and management of alternating hemiplegia of childhood.}, Journal = {Dev Med Child Neurol}, Volume = {61}, Number = {5}, Pages = {547-554}, Year = {2019}, Month = {May}, url = {http://dx.doi.org/10.1111/dmcn.14077}, Abstract = {AIM: To determine the neuropsychological abnormalities that occur in alternating hemiplegia of childhood (AHC) and report on our experience in managing them. METHOD: Patients underwent evaluations according to our standardized AHC pathway. Data were entered into our prospective AHC database and then analyzed. RESULTS: Of the cohort of 25 consecutive patients (ages 15mo-42y), eight had initial chief complaints about cognition, 14 language, five attention, and 11 behavior. As compared to population norms means, neuropsychological and behavioral assessment tools (including Child Behavior Checklist, Vineland Adaptive Behavior Scales, Peabody Picture Vocabulary, and Wechsler Intelligence Quotient tests) showed significant impairments in multiple domains: cognition, expressive and receptive language, executive function/attention, and behavior (p<0.05 in all comparisons). Evaluations generated management recommendations in all patients. Twenty had neuropsychiatric diagnoses: 10 attention-deficit/hyperactivity disorder (ADHD), seven disruptive behavior, and three anxiety disorder. Eight out of nine patients with ADHD who were prescribed medications responded to pharmacotherapy. INTERPRETATION: Patients with AHC have developmental difficulties related to impairments in multiple neuropsychological domains. This supports the hypothesis that the underlying AHC pathophysiology involves diffuse neuronal dysfunction. Testing generated recommendations to help manage these difficulties. Patients with AHC also have a range of neuropsychiatric diagnoses, the most common being ADHD which responds to pharmacotherapy. WHAT THIS PAPER ADDS: Patients with alternating hemiplegia of childhood (AHC) have developmental difficulties with underlying neuropsychological impairments. The findings in this study are consistent with an underlying AHC pathophysiology which involves diffuse neuronal, probably largely GABAergic, dysfunction. Patients with AHC have a range of neuropsychiatric diagnoses, the most common being attention-deficit/hyperactivity disorder.}, Doi = {10.1111/dmcn.14077}, Key = {fds339603} } @article{fds338616, Author = {Tan, QK-G and Cope, H and Spillmann, RC and Stong, N and Jiang, Y-H and McDonald, MT and Rothman, JA and Butler, MW and Frush, DP and Lachman, RS and Lee, B and Bacino, CA and Bonner, MJ and McCall, CM and Pendse, AA and Walley, N and Undiagnosed Diseases Network, and Shashi, V and Pena, LDM}, Title = {Further evidence for the involvement of EFL1 in a Shwachman-Diamond-like syndrome and expansion of the phenotypic features.}, Journal = {Cold Spring Harb Mol Case Stud}, Volume = {4}, Number = {5}, Year = {2018}, Month = {October}, url = {http://dx.doi.org/10.1101/mcs.a003046}, Abstract = {Recent evidence has implicated EFL1 in a phenotype overlapping Shwachman-Diamond syndrome (SDS), with the functional interplay between EFL1 and the previously known causative gene SBDS accounting for the similarity in clinical features. Relatively little is known about the phenotypes associated with pathogenic variants in the EFL1 gene, but the initial indication was that phenotypes may be more severe, when compared with SDS. We report a pediatric patient who presented with a metaphyseal dysplasia and was found to have biallelic variants in EFL1 on reanalysis of trio whole-exome sequencing data. The variant had not been initially reported because of the research laboratory's focus on de novo variants. Subsequent phenotyping revealed variability in her manifestations. Although her metaphyseal abnormalities were more severe than in the original reported cohort with EFL1 variants, the bone marrow abnormalities were generally mild, and there was equivocal evidence for pancreatic insufficiency. Despite the limited number of reported patients, variants in EFL1 appear to cause a broader spectrum of symptoms that overlap with those seen in SDS. Our report adds to the evidence of EFL1 being associated with an SDS-like phenotype and provides information adding to our understanding of the phenotypic variability of this disorder. Our report also highlights the value of exome data reanalysis when a diagnosis is not initially apparent.}, Doi = {10.1101/mcs.a003046}, Key = {fds338616} } @article{fds336054, Author = {Anderson, LM and Leonard, S and Jonassaint, J and Lunyera, J and Bonner, M and Shah, N}, Title = {Mobile health intervention for youth with sickle cell disease: Impact on adherence, disease knowledge, and quality of life.}, Journal = {Pediatr Blood Cancer}, Volume = {65}, Number = {8}, Pages = {e27081}, Publisher = {WILEY}, Year = {2018}, Month = {August}, url = {http://dx.doi.org/10.1002/pbc.27081}, Abstract = {BACKGROUND: Adherence to illness self-management among youth with sickle cell disease (SCD) positively impacts health outcomes and decreases overall healthcare costs. Despite this, children with SCD face several barriers to adherence, with adherence rates that remain moderate to low. The current feasibility study examined the Intensive Training Program (ITP), a mobile health (mHealth) intervention for youth with SCD designed to promote disease knowledge, adherence, and patient-provider communication. PROCEDURE: Youth with SCD prescribed hydroxyurea between ages 7-18 completed baseline disease knowledge and psychosocial assessments and then were provided with the ITP app. Youth participated in the 90-day ITP, during which they completed three education modules, tracked adherence through daily self-recorded videos on the app, and received video messages from providers. Participants completed poststudy knowledge, psychosocial, and feasibility questionnaires. Medication possession ratio (MPR) was obtained via pharmacy-refill rates. RESULTS: Thirty-two youths (mean age = 13.0 years) participated, with an average adherence tracking rate of 0.6 (standard deviation = 0.34). All participants demonstrated increased MPR (0.57-0.74, P < 0.001, d = 0.75) and disease knowledge (59.6-88.6%, P < 0.001). There was variable engagement in the ITP; completers demonstrated significantly better SCD-related functioning (P < 0.05), higher parent-reported treatment functioning (P < 0.05), and lower pain impact than noncompleters of the ITP (P < 0.05). CONCLUSIONS: Results support the ITP can feasibly be implemented to promote adherence among youth with SCD. All participants demonstrated increased adherence and disease knowledge. However, there was variable engagement and only intervention completers showed improvements in psychosocial outcomes. Further research is needed to evaluate long-term outcomes and ways to promote engagement in mHealth interventions among the youth.}, Doi = {10.1002/pbc.27081}, Key = {fds336054} } @article{fds330040, Author = {Schreiber, JE and Palmer, SL and Conklin, HM and Mabbott, DJ and Swain, MA and Bonner, MJ and Chapieski, ML and Huang, L and Zhang, H and Gajjar, A}, Title = {Posterior fossa syndrome and long-term neuropsychological outcomes among children treated for medulloblastoma on a multi-institutional, prospective study.}, Journal = {Neuro Oncol}, Volume = {19}, Number = {12}, Pages = {1673-1682}, Year = {2017}, Month = {November}, url = {http://dx.doi.org/10.1093/neuonc/nox135}, Abstract = {BACKGROUND: Patients treated for medulloblastoma who experience posterior fossa syndrome (PFS) demonstrate increased risk for neurocognitive impairment at one year post diagnosis. The aim of the study was to examine longitudinal trajectories of neuropsychological outcomes in patients who experienced PFS compared with patients who did not. METHODS: Participants were 36 patients (22 males) who experienced PFS and 36 comparison patients (21 males) who were matched on age at diagnosis and treatment exposure but did not experience PFS. All patients underwent serial evaluation of neurocognitive functioning spanning 1 to 5 years post diagnosis. RESULTS: The PFS group demonstrated lower estimated mean scores at 1, 3, and 5 years post diagnosis on measures of general intellectual ability, processing speed, broad attention, working memory, and spatial relations compared with the non-PFS group. The PFS group exhibited estimated mean scores that were at least one standard deviation below the mean for intellectual ability, processing speed, and broad attention across all time points and for working memory by 5 years post diagnosis. Processing speed was stable over time. Attention and working memory declined over time. Despite some change over time, caregiver ratings of executive function and behavior problem symptoms remained within the average range. CONCLUSION: Compared with patients who do not experience PFS, patients who experience PFS exhibit greater neurocognitive impairment, show little recovery over time, and decline further in some domains. Findings highlight the particularly high risk for long-term neurocognitive problems in patients who experience PFS and the need for close follow-up and intervention.}, Doi = {10.1093/neuonc/nox135}, Key = {fds330040} } @article{fds319600, Author = {Allen, TM and Anderson, LM and Rothman, JA and Bonner, MJ}, Title = {[Formula: see text]Executive functioning and health-related quality of life in pediatric sickle cell disease.}, Journal = {Child Neuropsychol}, Volume = {23}, Number = {8}, Pages = {889-906}, Year = {2017}, Month = {November}, url = {http://dx.doi.org/10.1080/09297049.2016.1205011}, Abstract = {Research consistently indicates that children with sickle cell disease (SCD) face multiple risk factors for neurocognitive impairment. Despite this, no empirical research to date has examined the impact of neurocognitive functioning on quality of life for this pediatric group. Thus, the current study aims to examine the relationship between executive functioning and quality of life in a sample of children with SCD and further explore psychosocial and family/caregiver resources as moderators of this relationship. A total of 45 children with SCD aged 8 to 16 years and their caregivers completed measures of quality of life, behavioral ratings of executive functioning, and psychosocial functioning. Hierarchical linear regression models were utilized to determine the impact of executive functioning on quality of life and further test the interaction effects of proposed moderating variables. Controlling for age, pain, and socioeconomic status (SES), executive functioning was found to significantly predict child- and parent-reported quality of life among youth with SCD. Psychosocial resources of the primary caregiver or family was not found to moderate the relationship between executive functioning and quality of life. These results provide the first empirical evidence that lower executive skills negatively predict quality of life for children with SCD, supporting clinical and research efforts which aim to establish efficacious interventions that target cognitive decrements within this pediatric population.}, Doi = {10.1080/09297049.2016.1205011}, Key = {fds319600} } @article{fds330041, Author = {Gallentine, WB and Shinnar, S and Hesdorffer, DC and Epstein, L and Nordli, DR and Lewis, DV and Frank, LM and Seinfeld, S and Shinnar, RC and Cornett, K and Liu, B and Moshé, SL and Sun, S and FEBSTAT Investigator Team}, Title = {Plasma cytokines associated with febrile status epilepticus in children: A potential biomarker for acute hippocampal injury.}, Journal = {Epilepsia}, Volume = {58}, Number = {6}, Pages = {1102-1111}, Year = {2017}, Month = {June}, url = {http://dx.doi.org/10.1111/epi.13750}, Abstract = {OBJECTIVE: Our aim was to explore the association between plasma cytokines and febrile status epilepticus (FSE) in children, as well as their potential as biomarkers of acute hippocampal injury. METHODS: Analysis was performed on residual samples of children with FSE (n = 33) as part of the Consequences of Prolonged Febrile Seizures in Childhood study (FEBSTAT) and compared to children with fever (n = 17). Magnetic resonance imaging (MRI) was obtained as part of FEBSTAT within 72 h of FSE. Cytokine levels and ratios of antiinflammatory versus proinflammatory cytokines in children with and without hippocampal T2 hyperintensity were assessed as biomarkers of acute hippocampal injury after FSE. RESULTS: Levels of interleukin (IL)-8 and epidermal growth factor (EGF) were significantly elevated after FSE in comparison to controls. IL-1β levels trended higher and IL-1RA trended lower following FSE, but did not reach statistical significance. Children with FSE were found to have significantly lower ratios of IL-1RA/IL-1β and IL-1RA/IL-8. Specific levels of any one individual cytokine were not associated with FSE. However, lower ratios of IL-1RA/IL-1β, IL-1RA/1L-6, and IL-1RA/ IL-8 were all associated with FSE. IL-6 and IL-8 levels were significantly higher and ratios of IL-1RA/IL-6 and IL-1RA/IL-8 were significantly lower in children with T2 hippocampal hyperintensity on MRI after FSE in comparison to those without hippocampal signal abnormalities. Neither individual cytokine levels nor ratios of IL-1RA/IL-1β or IL-1RA/IL-8 were predictive of MRI changes. However, a lower ratio of IL-1RA/IL-6 was strongly predictive (odds ratio [OR] 21.5, 95% confidence interval [CI] 1.17-393) of hippocampal T2 hyperintensity after FSE. SIGNIFICANCE: Our data support involvement of the IL-1 cytokine system, IL-6, and IL-8 in FSE in children. The identification of the IL-1RA/IL-6 ratio as a potential biomarker of acute hippocampal injury following FSE is the most significant finding. If replicated in another study, the IL-1RA/IL-6 ratio could represent a serologic biomarker that offers rapid identification of patients at risk for ultimately developing mesial temporal lobe epilepsy (MTLE).}, Doi = {10.1111/epi.13750}, Key = {fds330041} } @article{fds316069, Author = {Willard, VW and Allen, TM and Hardy, KK and Bonner, MJ}, Title = {Social functioning in survivors of pediatric brain tumors: Contribution of neurocognitive and social-cognitive skills}, Journal = {Children's Health Care}, Volume = {46}, Number = {2}, Pages = {181-195}, Publisher = {Informa UK Limited}, Year = {2017}, Month = {April}, ISSN = {0273-9615}, url = {http://dx.doi.org/10.1080/02739615.2015.1124769}, Abstract = {This study assessed neurocognitive and social-cognitive skills in survivors of pediatric brain tumors, and evaluated their combined contribution to social outcomes. Survivors (N = 10) and typically developing children (N = 41), aged 8–16, completed measures of neurocognitive and social-cognitive skills, and social functioning/adjustment. Survivors demonstrated difficulties across domains as compared to typically developing children. Hierarchical regression analyses with the combined sample suggested that the combination of neurocognitive and social-cognitive skills accounted for over half of the variance in parent-reported social functioning. Inattentive symptoms and recognition of child faces were significantly associated with social outcomes. Increasing our understanding of social outcomes in survivors is critical to the creation of targeted interventions.}, Doi = {10.1080/02739615.2015.1124769}, Key = {fds316069} } @article{fds324821, Author = {Shashi, V and Pena, LDM and Kim, K and Burton, B and Hempel, M and Schoch, K and Walkiewicz, M and McLaughlin, HM and Cho, M and Stong, N and Hickey, SE and Shuss, CM and Undiagnosed Diseases Network, and Freemark, MS and Bellet, JS and Keels, MA and Bonner, MJ and El-Dairi, M and Butler, M and Kranz, PG and Stumpel, CTRM and Klinkenberg, S and Oberndorff, K and Alawi, M and Santer, R and Petrovski, S and Kuismin, O and Korpi-Heikkilä, S and Pietilainen, O and Aarno, P and Kurki, MI and Hoischen, A and Need, AC and Goldstein, DB and Kortüm, F}, Title = {De Novo Truncating Variants in ASXL2 Are Associated with a Unique and Recognizable Clinical Phenotype.}, Journal = {Am J Hum Genet}, Volume = {100}, Number = {1}, Pages = {179}, Year = {2017}, Month = {January}, url = {http://dx.doi.org/10.1016/j.ajhg.2016.12.004}, Doi = {10.1016/j.ajhg.2016.12.004}, Key = {fds324821} } @article{fds330042, Author = {Weiss, EF and Masur, D and Shinnar, S and Hesdorffer, DC and Hinton, VJ and Bonner, M and Rinaldi, J and Van de Water and V and Culbert, J and Shinnar, RC and Seinfeld, S and Gallentine, W and Nordli, DR and Frank, LM and Epstein, L and Moshé, SL and Sun, S and FEBSTAT study team}, Title = {Cognitive functioning one month and one year following febrile status epilepticus.}, Journal = {Epilepsy Behav}, Volume = {64}, Number = {Pt A}, Pages = {283-288}, Year = {2016}, Month = {November}, url = {http://dx.doi.org/10.1016/j.yebeh.2016.09.013}, Abstract = {OBJECTIVE: The objective of this study was to determine early developmental and cognitive outcomes of children with febrile status epilepticus (FSE) one month and one year after FSE. METHODS: One hundred ninety four children with FSE were evaluated on measures of cognition, receptive language, and memory as part of the FEBSTAT study and compared with 100 controls with simple febrile seizures (FSs). RESULTS: Children with FSE did not differ dramatically on tasks compared with FS controls at one month after FSE but demonstrated slightly weaker motor development (p=0.035) and receptive language (p=0.034) at one year after FSE. Performances were generally within the low average to average range. Within the FSE cohort, non-White children performed weaker on many of the tasks compared with Caucasian children. At the one-year visit, acute hippocampal T2 findings on MRI were associated with weaker receptive language skills (p=0.0009), and human herpes virus 6 or 7 (HHV6/7) viremia was associated with better memory performances (p=0.047). CONCLUSION: Febrile status epilepticus does not appear to be associated with significant cognitive impairment on early developmental measures, although there is a trend for possible receptive language and motor delay one year after FSE. Further follow-up, which is in progress, is necessary to track long-term cognitive functioning.}, Doi = {10.1016/j.yebeh.2016.09.013}, Key = {fds330042} } @article{fds319599, Author = {Shashi, V and Pena, LDM and Kim, K and Burton, B and Hempel, M and Schoch, K and Walkiewicz, M and McLaughlin, HM and Cho, M and Stong, N and Hickey, SE and Shuss, CM and Undiagnosed Diseases Network, and Freemark, MS and Bellet, JS and Keels, MA and Bonner, MJ and El-Dairi, M and Butler, M and Kranz, PG and Stumpel, CTRM and Klinkenberg, S and Oberndorff, K and Alawi, M and Santer, R and Petrovski, S and Kuismin, O and Korpi-Heikkilä, S and Pietilainen, O and Aarno, P and Kurki, MI and Hoischen, A and Need, AC and Goldstein, DB and Kortüm, F}, Title = {De Novo Truncating Variants in ASXL2 Are Associated with a Unique and Recognizable Clinical Phenotype.}, Journal = {Am J Hum Genet}, Volume = {99}, Number = {4}, Pages = {991-999}, Year = {2016}, Month = {October}, url = {http://dx.doi.org/10.1016/j.ajhg.2016.08.017}, Abstract = {The ASXL genes (ASXL1, ASXL2, and ASXL3) participate in body patterning during embryogenesis and encode proteins involved in epigenetic regulation and assembly of transcription factors to specific genomic loci. Germline de novo truncating variants in ASXL1 and ASXL3 have been respectively implicated in causing Bohring-Opitz and Bainbridge-Ropers syndromes, which result in overlapping features of severe intellectual disability and dysmorphic features. ASXL2 has not yet been associated with a human Mendelian disorder. In this study, we performed whole-exome sequencing in six unrelated probands with developmental delay, macrocephaly, and dysmorphic features. All six had de novo truncating variants in ASXL2. A careful review enabled the recognition of a specific phenotype consisting of macrocephaly, prominent eyes, arched eyebrows, hypertelorism, a glabellar nevus flammeus, neonatal feeding difficulties, hypotonia, and developmental disabilities. Although overlapping features with Bohring-Opitz and Bainbridge-Ropers syndromes exist, features that distinguish the ASXL2-associated condition from ASXL1- and ASXL3-related disorders are macrocephaly, absence of growth retardation, and more variability in the degree of intellectual disabilities. We were also able to demonstrate with mRNA studies that these variants are likely to exert a dominant-negative effect, given that both alleles are expressed in blood and the mutated ASXL2 transcripts escape nonsense-mediated decay. In conclusion, de novo truncating variants in ASXL2 underlie a neurodevelopmental syndrome with a clinically recognizable phenotype. This report expands the germline disorders that are linked to the ASXL genes.}, Doi = {10.1016/j.ajhg.2016.08.017}, Key = {fds319599} } @article{fds311652, Author = {Willard, VW and Hostetter, SA and Hutchinson, KC and Bonner, MJ and Hardy, KK}, Title = {Benefit Finding in Maternal Caregivers of Pediatric Cancer Survivors: A Mixed Methods Approach.}, Journal = {J Pediatr Oncol Nurs}, Volume = {33}, Number = {5}, Pages = {353-360}, Year = {2016}, Month = {September}, ISSN = {1043-4542}, url = {http://dx.doi.org/10.1177/1043454215620119}, Abstract = {OBJECTIVE: Benefit finding has been described as the identification of positive effects resulting from otherwise stressful experiences. In this mixed methods study, we examined the relations between qualitative themes related to benefit finding and quantitative measures of psychosocial adjustment and coping as reported by maternal caregivers of survivors of pediatric cancer. METHODS: Female caregivers of survivors of pediatric cancer (n = 40) completed a qualitative questionnaire about their experiences caring for their child, along with several quantitative measures. Qualitative questionnaires were coded for salient themes, including social support and personal growth. Correlation matrices evaluated associations between qualitative themes and quantitative measures of stress and coping. RESULTS: Identified benefits included social support and personal growth, as well as child-specific benefits. Total benefits reported were significantly positively correlated with availability of emotional resources. Coping methods were also associated, with accepting responsibility associated with fewer identified benefits. CONCLUSION: Despite the stress of their child's illness, many female caregivers of survivors of pediatric cancer reported finding benefits associated with their experience. Benefit finding in this sample was associated with better adjustment.}, Doi = {10.1177/1043454215620119}, Key = {fds311652} } @article{fds330043, Author = {Hesdorffer, DC and Shinnar, S and Lax, DN and Pellock, JM and Nordli, DR and Seinfeld, S and Gallentine, W and Frank, LM and Lewis, DV and Shinnar, RC and Bello, JA and Chan, S and Epstein, LG and Moshé, SL and Liu, B and Sun, S and FEBSTAT study team}, Title = {Risk factors for subsequent febrile seizures in the FEBSTAT study.}, Journal = {Epilepsia}, Volume = {57}, Number = {7}, Pages = {1042-1047}, Year = {2016}, Month = {July}, url = {http://dx.doi.org/10.1111/epi.13418}, Abstract = {OBJECTIVES: To identify risk and risk factors for developing a subsequent febrile seizure (FS) in children with a first febrile status epilepticus (FSE) compared to a first simple febrile seizure (SFS). To identify home use of rescue medications for subsequent FS. METHODS: Cases included a first FS that was FSE drawn from FEBSTAT and Columbia cohorts. Controls were a first SFS. Cases and controls were classified according to established FEBSTAT protocols. Cumulative risk for subsequent FS over a 5-year period was compared in FSE versus SFS, and Cox proportional hazards regression was conducted. Separate analysis examined subsequent FS within FSE. The use of rescue medications at home was assessed for subsequent FS. RESULTS: Risk for a subsequent FSE was significantly increased in FSE versus SFS. Any magnetic resonance imaging (MRI) abnormality increased the risk 3.4-fold (p < 0.05), adjusting for age at first FS and FSE and in analyses restricted to children whose first FS was FSE (any MRI abnormality hazard ratio [HR] 2.9, p < 0.05). The risk for a second FS of any type or of subsequent FS lasting >10 min over the 5-year follow-up did not differ in FSE versus SFS. Rectal diazepam was administered at home to 5 (23.8%) of 21 children with subsequent FS lasting ≥10 min. SIGNIFICANCE: Compared to controls, FSE was associated with an increased risk for subsequent FSE, suggesting the propensity of children with an initial prolonged seizure to experience a prolonged recurrence. Any baseline MRI abnormality increased the recurrence risk when FSE was compared to SFS and when FSE was studied alone. A minority of children with a subsequent FS lasting 10 min or longer were treated with rectal diazepam at home, despite receiving prescriptions after the first FSE. This indicates the need to further improve the education of clinicians and parents in order to prevent subsequent FSE.}, Doi = {10.1111/epi.13418}, Key = {fds330043} } @article{fds311653, Author = {Allen, T and Willard, VW and Anderson, LM and Hardy, KK and Bonner, MJ}, Title = {Social functioning and facial expression recognition in children with neurofibromatosis type 1.}, Journal = {J Intellect Disabil Res}, Volume = {60}, Number = {3}, Pages = {282-293}, Year = {2016}, Month = {March}, ISSN = {0964-2633}, url = {http://dx.doi.org/10.1111/jir.12248}, Abstract = {BACKGROUND: This study examined social functioning and facial expression recognition (FER) in children with neurofibromatosis type 1 (NF1) compared to typically developing peers. Specifically, the current research aimed to identify hypothesised relationships between neurocognitive ability, FER and social functioning. METHOD: Children, ages 8 to 16, with NF1 (n = 23) and typically developing peers (n = 23) were recruited during regularly scheduled clinic visits and through advertisements on an institutional clinical trials website, respectively. Participants completed a measure of FER, an abbreviated intelligence test and questionnaires regarding their quality of life and behavioural functioning. Parents were also asked to complete questionnaires regarding the social-emotional and cognitive functioning of their child. RESULTS: As expected, there were significant differences between children with NF1 and typically developing peers across domains of social functioning and FER. Within the sample of children with NF1, there were no significant associations observed between cognitive measures, social functioning and facial recognition skills. CONCLUSION: Children with NF1 exhibited high rates of social impairment and weak FER skills compared to controls. The absence of associations between FER with cognitive and social variables, however, suggests something unique about this skill in children with NF1. Theoretical comparisons are made to children with autism spectrum disorders, as this condition may serve as a potentially useful model in better understanding FER in children with NF1.}, Doi = {10.1111/jir.12248}, Key = {fds311653} } @article{fds302231, Author = {Ware, RE and Davis, BR and Schultz, WH and Brown, RC and Aygun, B and Sarnaik, S and Odame, I and Fuh, B and George, A and Owen, W and Luchtman-Jones, L and Rogers, ZR and Hilliard, L and Gauger, C and Piccone, C and Lee, MT and Kwiatkowski, JL and Jackson, S and Miller, ST and Roberts, C and Heeney, MM and Kalfa, TA and Nelson, S and Imran, H and Nottage, K and Alvarez, O and Rhodes, M and Thompson, AA and Rothman, JA and Helton, KJ and Roberts, D and Coleman, J and Bonner, MJ and Kutlar, A and Patel, N and Wood, J and Piller, L and Wei, P and Luden, J and Mortier, NA and Stuber, SE and Luban, NLC and Cohen, AR and Pressel, S and Adams, RJ}, Title = {Hydroxycarbamide versus chronic transfusion for maintenance of transcranial doppler flow velocities in children with sickle cell anaemia-TCD With Transfusions Changing to Hydroxyurea (TWiTCH): a multicentre, open-label, phase 3, non-inferiority trial.}, Journal = {Lancet}, Volume = {387}, Number = {10019}, Pages = {661-670}, Year = {2016}, Month = {February}, ISSN = {0140-6736}, url = {http://dx.doi.org/10.1016/S0140-6736(15)01041-7}, Abstract = {BACKGROUND: For children with sickle cell anaemia and high transcranial doppler (TCD) flow velocities, regular blood transfusions can effectively prevent primary stroke, but must be continued indefinitely. The efficacy of hydroxycarbamide (hydroxyurea) in this setting is unknown; we performed the TWiTCH trial to compare hydroxyurea with standard transfusions. METHODS: TWiTCH was a multicentre, phase 3, randomised, open-label, non-inferiority trial done at 26 paediatric hospitals and health centres in the USA and Canada. We enrolled children with sickle cell anaemia who were aged 4-16 years and had abnormal TCD flow velocities (≥ 200 cm/s) but no severe vasculopathy. After screening, eligible participants were randomly assigned 1:1 to continue standard transfusions (standard group) or hydroxycarbamide (alternative group). Randomisation was done at a central site, stratified by site with a block size of four, and an adaptive randomisation scheme was used to balance the covariates of baseline age and TCD velocity. The study was open-label, but TCD examinations were read centrally by observers masked to treatment assignment and previous TCD results. Participants assigned to standard treatment continued to receive monthly transfusions to maintain 30% sickle haemoglobin or lower, while those assigned to the alternative treatment started oral hydroxycarbamide at 20 mg/kg per day, which was escalated to each participant's maximum tolerated dose. The treatment period lasted 24 months from randomisation. The primary study endpoint was the 24 month TCD velocity calculated from a general linear mixed model, with the non-inferiority margin set at 15 cm/s. The primary analysis was done in the intention-to-treat population and safety was assessed in all patients who received at least one dose of assigned treatment. This study is registered with ClinicalTrials.gov, number NCT01425307. FINDINGS: Between Sept 20, 2011, and April 17, 2013, 159 patients consented and enrolled in TWiTCH. 121 participants passed screening and were then randomly assigned to treatment (61 to transfusions and 60 to hydroxycarbamide). At the first scheduled interim analysis, non-inferiority was shown and the sponsor terminated the study. Final model-based TCD velocities were 143 cm/s (95% CI 140-146) in children who received standard transfusions and 138 cm/s (135-142) in those who received hydroxycarbamide, with a difference of 4·54 (0·10-8·98). Non-inferiority (p=8·82 × 10(-16)) and post-hoc superiority (p=0·023) were met. Of 29 new neurological events adjudicated centrally by masked reviewers, no strokes were identified, but three transient ischaemic attacks occurred in each group. Magnetic resonance brain imaging and angiography (MRI and MRA) at exit showed no new cerebral infarcts in either treatment group, but worsened vasculopathy in one participant who received standard transfusions. 23 severe adverse events in nine (15%) patients were reported for hydroxycarbamide and ten serious adverse events in six (10%) patients were reported for standard transfusions. The most common serious adverse event in both groups was vaso-occlusive pain (11 events in five [8%] patients with hydroxycarbamide and three events in one [2%] patient for transfusions). INTERPRETATION: For high-risk children with sickle cell anaemia and abnormal TCD velocities who have received at least 1 year of transfusions, and have no MRA-defined severe vasculopathy, hydroxycarbamide treatment can substitute for chronic transfusions to maintain TCD velocities and help to prevent primary stroke. FUNDING: National Heart, Lung, and Blood Institute, National Institutes of Health.}, Doi = {10.1016/S0140-6736(15)01041-7}, Key = {fds302231} } @article{fds333035, Author = {Mikati, MA and Jiang, Y-H and Carboni, M and Shashi, V and Petrovski, S and Spillmann, R and Milligan, CJ and Li, M and Grefe, A and McConkie, A and Berkovic, S and Scheffer, I and Mullen, S and Bonner, M and Petrou, S and Goldstein, D}, Title = {Quinidine in the treatment of KCNT1-positive epilepsies.}, Journal = {Ann Neurol}, Volume = {78}, Number = {6}, Pages = {995-999}, Year = {2015}, Month = {December}, url = {http://dx.doi.org/10.1002/ana.24520}, Abstract = {We report 2 patients with drug-resistant epilepsy caused by KCNT1 mutations who were treated with quinidine. Both mutations manifested gain of function in vitro, showing increased current that was reduced by quinidine. One, who had epilepsy of infancy with migrating focal seizures, had 80% reduction in seizure frequency as recorded in seizure diaries, and partially validated by objective seizure evaluation on EEG. The other, who had a novel phenotype, with severe nocturnal focal and secondary generalized seizures starting in early childhood with developmental regression, did not improve. Although quinidine represents an encouraging opportunity for therapeutic benefits, our experience suggests caution in its application and supports the need to identify more targeted drugs for KCNT1 epilepsies.}, Doi = {10.1002/ana.24520}, Key = {fds333035} } @article{fds299401, Author = {Anderson, LM and Allen, TM and Thornburg, CD and Bonner, MJ}, Title = {Fatigue in Children With Sickle Cell Disease: Association With Neurocognitive and Social-Emotional Functioning and Quality of Life.}, Journal = {J Pediatr Hematol Oncol}, Volume = {37}, Number = {8}, Pages = {584-589}, Year = {2015}, Month = {November}, ISSN = {1077-4114}, url = {http://dx.doi.org/10.1097/MPH.0000000000000431}, Abstract = {Children with sickle cell disease (SCD) report fatigue in addition to acute and chronic pain, which can decrease overall health-related quality of life (HRQL). The primary objective of the current study was to investigate the relationship between fatigue and HRQL. Given limited prior research, secondary objectives included investigation of associations between fatigue and functional outcomes, including child neurocognitive and social-emotional functioning. Children aged 8 to 16 years (N=32) and a caregiver completed measures of fatigue, HRQL, pain, and neurocognitive and social-emotional functioning. Controlling for pain and number of SCD-related hospitalizations, hierarchical linear regression models were used to determine the impact of child-reported and parent-reported fatigue on child HRQL. Correlational analyses were used to explore the relationship between fatigue and additional child outcomes. Data indicated that children with SCD experience clinically relevant levels of fatigue, which independently predicts lower HRQL. Fatigue was also associated with lower working memory, executive functioning, and higher levels of internalizing symptoms. Given its observed impact on HRQL and relationship to functional outcomes, fatigue may be an important target of clinical, home, or school interventions. This practice may attenuate the burden of fatigue in these patients, and in turn, help improve the quality of life of children living with SCD.}, Doi = {10.1097/MPH.0000000000000431}, Key = {fds299401} } @article{fds299403, Author = {Shashi, V and Harrell, W and Eack, S and Sanders, C and McConkie-Rosell, A and Keshavan, MS and Bonner, MJ and Schoch, K and Hooper, SR}, Title = {Social cognitive training in adolescents with chromosome 22q11.2 deletion syndrome: feasibility and preliminary effects of the intervention.}, Journal = {J Intellect Disabil Res}, Volume = {59}, Number = {10}, Pages = {902-913}, Year = {2015}, Month = {October}, ISSN = {0964-2633}, url = {http://dx.doi.org/10.1111/jir.12192}, Abstract = {BACKGROUND: Children with chromosome 22q11.2 deletion syndrome (22q11DS) often have deficits in social cognition and social skills that contribute to poor adaptive functioning. These deficits may be of relevance to the later occurrence of serious psychiatric illnesses such as schizophrenia. Yet, there are no evidence-based interventions to improve social cognitive functioning in children with 22q11DS. METHODS: Using a customised social cognitive curriculum, we conducted a pilot small-group-based social cognitive training (SCT) programme in 13 adolescents with 22q11DS, relative to a control group of nine age- and gender-matched adolescents with 22q11DS. RESULTS: We found the SCT programme to be feasible, with high rates of compliance and satisfaction on the part of the participants and their families. Our preliminary analyses indicated that the intervention group showed significant improvements in an overall social cognitive composite index. CONCLUSIONS: SCT in a small-group format for adolescents with 22q11DS is feasible and results in gains in social cognition. A larger randomised controlled trial would permit assessment of efficacy of this promising novel intervention.}, Doi = {10.1111/jir.12192}, Key = {fds299403} } @article{fds299402, Author = {Hardy, KK and Willard, VW and Wigdor, AB and Allen, TM and Bonner, MJ}, Title = {The potential utility of parent-reported attention screening in survivors of childhood cancer to identify those in need of comprehensive neuropsychological evaluation.}, Journal = {Neurooncol Pract}, Volume = {2}, Number = {1}, Pages = {32-39}, Year = {2015}, Month = {March}, ISSN = {2054-2577}, url = {http://dx.doi.org/10.1093/nop/npu026}, Abstract = {BACKGROUND: Survivors of childhood cancer are at risk for neuropsychological late effects, yet identifying those in need of evaluation and obtaining needed services can be challenging for the medical team. Finding time- and cost-effective screening measures that can be used to identify children in need of evaluation is a clinical priority. Our objective was to investigate the association between parent-rated attention problems and related neuropsychological impairments in childhood cancer survivors as a means of identifying those at high risk for difficulties. METHODS: Cognitive and psychosocial data of survivors who completed neuropsychological evaluations were retrospectively abstracted. Parents of 70 survivors of pediatric cancer (mean age, 11.6 years) completed the Conners Parent Rating Scale and the Child Behavior Checklist. Children also completed a measure of intellectual functioning. The 18 symptoms of inattention and hyperactivity were abstracted from the Conners questionnaire, and participants were classified according to whether or not they met attention deficit/hyperactivity disorder (ADHD) symptom criteria (≥6 inattentive symptoms). RESULTS: Survivors who met symptom criteria for ADHD (27%) demonstrated greater impairments in IQ and working memory, but not processing speed, than survivors who did not. Meeting ADHD symptom criteria was also associated with greater externalizing and social problems but not more internalizing symptoms. ADHD symptom screening was associated with low sensitivity (range = 26.3%-69.2%) but stronger specificity (range = 75.0%-82.7%) for neuropsychological difficulties. CONCLUSION: Parental ratings of attentional symptoms may be a useful way to screen survivors who may be in need of a full neuropsychological assessment.}, Doi = {10.1093/nop/npu026}, Key = {fds299402} } @article{fds271051, Author = {Schreiber, JE and Gurney, JG and Palmer, SL and Bass, JK and Wang, M and Chen, S and Zhang, H and Swain, M and Chapieski, ML and Bonner, MJ and Mabbott, DJ and Knight, SJ and Armstrong, CL and Boyle, R and Gajjar, A}, Title = {Examination of risk factors for intellectual and academic outcomes following treatment for pediatric medulloblastoma.}, Journal = {Neuro Oncol}, Volume = {16}, Number = {8}, Pages = {1129-1136}, Year = {2014}, Month = {August}, ISSN = {1522-8517}, url = {http://dx.doi.org/10.1093/neuonc/nou006}, Abstract = {BACKGROUND: The aim of this study was to prospectively examine the effects of hearing loss and posterior fossa syndrome (PFS), in addition to age at diagnosis and disease risk status, on change in intellectual and academic outcomes following diagnosis and treatment in a large sample of medulloblastoma patients. METHODS: Data from at least 2 cognitive and academic assessments were available from 165 patients (ages 3-21 years) treated with surgery, risk-adapted craniospinal irradiation, and 4 courses of chemotherapy with stem cell support. Patients underwent serial evaluation of cognitive and academic functioning from baseline up to 5 years post diagnosis. RESULTS: Serious hearing loss, PFS, younger age at diagnosis, and high-risk status were all significant risk factors for decline in intellectual and academic skills. Serious hearing loss and PFS independently predicted below-average estimated mean intellectual ability at 5 years post diagnosis. Patients with high-risk medulloblastoma and young age at diagnosis (<7 years) exhibited the largest drop in mean scores for intellectual and academic outcomes. CONCLUSIONS: Despite a significant decline over time, intellectual and academic outcomes remained within the average range at 5 years post diagnosis for the majority of patients. Future studies should determine if scores remain within the average range at time points further out from treatment. Patients at heightened risk should be closely monitored and provided with recommendations for appropriate interventions.}, Doi = {10.1093/neuonc/nou006}, Key = {fds271051} } @article{fds271045, Author = {Knight, SJ and Conklin, HM and Palmer, SL and Schreiber, JE and Armstrong, CL and Wallace, D and Bonner, M and Swain, MA and Evankovich, KD and Mabbott, DJ and Boyle, R and Huang, Q and Zhang, H and Anderson, VA and Gajjar, A}, Title = {Working memory abilities among children treated for medulloblastoma: parent report and child performance.}, Journal = {J Pediatr Psychol}, Volume = {39}, Number = {5}, Pages = {501-511}, Year = {2014}, Month = {June}, ISSN = {0146-8693}, url = {http://dx.doi.org/10.1093/jpepsy/jsu009}, Abstract = {OBJECTIVE: We investigated the 5-year postsurgical developmental trajectory of working memory (WM) in children with medulloblastoma using parent and performance-based measures. METHOD: This study included 167 patients treated for medulloblastoma. Serial assessments of WM occurred at predetermined time points for 5 years. RESULTS: There was a subtle, statistically significant increase in parental concern about WM, coupled with a statistically significant decrease in age-standardized scores on performance-based measures. However, whole-group mean scores on both parent and performance-based measures remained in the age-expected range. Posterior fossa syndrome was consistently associated with poorer WM. Younger age at treatment and higher treatment intensity were associated with greater negative change in WM performance only. CONCLUSIONS: Most children treated for medulloblastoma display WM within the age-appropriate range according to parent report and performance. However, the subtle negative changes over time and identified subgroups at increased risk highlight the need for ongoing monitoring of this population.}, Doi = {10.1093/jpepsy/jsu009}, Key = {fds271045} } @article{fds271046, Author = {Reddick, WE and Taghipour, DJ and Glass, JO and Ashford, J and Xiong, X and Wu, S and Bonner, M and Khan, RB and Conklin, HM}, Title = {Prognostic factors that increase the risk for reduced white matter volumes and deficits in attention and learning for survivors of childhood cancers.}, Journal = {Pediatr Blood Cancer}, Volume = {61}, Number = {6}, Pages = {1074-1079}, Year = {2014}, Month = {June}, ISSN = {1545-5009}, url = {http://dx.doi.org/10.1002/pbc.24947}, Abstract = {OBJECTIVE: In children, CNS-directed cancer therapy is thought to result in decreased cerebral white matter volumes (WMV) and subsequent neurocognitive deficits. This study was designed as a prospective validation of the purported reduction in WMV, associated influential factors, and its relationship to neurocognitive deficits in a very large cohort of both acute lymphoblastic leukemia (ALL) and malignant brain tumors (BT) survivors in comparison to an age similar cohort of healthy sibling controls. PROCEDURES: The effects of host characteristics and CNS treatment intensity on WMV were investigated in 383 childhood cancer survivors (199 ALL, 184 BT) at least 12 months post-completion of therapy and 67 healthy siblings that served as a control group. t-Tests and multiple variable linear models were used to assess cross-sectional WMV and its relation with neurocognitive function. RESULTS: BT survivors had lower WMV than ALL survivors, who had less than the control group. Increased CNS treatment intensity, younger age at treatment, and greater time since treatment were significantly associated with lower WMV. Additionally, cancer survivors did not perform as well as the control group on neurocognitive measures of intelligence, attention, and academic achievement. Reduced WMV had a larger impact on estimated IQ among females and children treated at a younger age. CONCLUSIONS: Survivors of childhood cancer that have undergone higher intensity therapy at a younger age have significantly less WMV than their peers and this difference increases with time since therapy. Decreased WMV is associated with significantly lower scores in intelligence, attention, and academic performance in survivors.}, Doi = {10.1002/pbc.24947}, Key = {fds271046} } @article{fds271047, Author = {Anderson, LM and Allen, TM and Nambuba, J and Thornburg, CD and Bonner, MJ}, Title = {Predictors of Fatigue in Children with Sickle Cell Disease}, Journal = {JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS}, Volume = {35}, Number = {2}, Pages = {S12-S12}, Publisher = {LIPPINCOTT WILLIAMS & WILKINS}, Year = {2014}, Month = {February}, ISSN = {0196-206X}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000336849800047&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271047} } @article{fds271048, Author = {Allen, TM and Anderson, LM and Nambuba, J and Thornburg, CD and Bonner, MJ}, Title = {The Impact of Cognitive Functioning on Quality of Life in Children with Sickle Cell Disease}, Journal = {JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS}, Volume = {35}, Number = {2}, Pages = {S11-S11}, Publisher = {LIPPINCOTT WILLIAMS & WILKINS}, Year = {2014}, Month = {February}, ISSN = {0196-206X}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000336849800042&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271048} } @article{fds271049, Author = {Serafini, S and Komisarow, JM and Gallentine, W and Mikati, MA and Bonner, MJ and Kranz, PG and Haglund, MM and Grant, G}, Title = {Reorganization and stability for motor and language areas using cortical stimulation: case example and review of the literature.}, Journal = {Brain Sci}, Volume = {3}, Number = {4}, Pages = {1597-1614}, Year = {2013}, Month = {November}, url = {http://dx.doi.org/10.3390/brainsci3041597}, Abstract = {The cerebral organization of language in epilepsy patients has been studied with invasive procedures such as Wada testing and electrical cortical stimulation mapping and more recently with noninvasive neuroimaging techniques, such as functional MRI. In the setting of a chronic seizure disorder, clinical variables have been shown to contribute to cerebral language reorganization underscoring the need for language lateralization and localization procedures. We present a 14-year-old pediatric patient with a refractory epilepsy disorder who underwent two neurosurgical resections of a left frontal epileptic focus separated by a year. He was mapped extraoperatively through a subdural grid using cortical stimulation to preserve motor and language functions. The clinical history and extensive workup prior to surgery is discussed as well as the opportunity to compare the cortical maps for language, motor, and sensory function before each resection. Reorganization in cortical tongue sensory areas was seen concomitant with a new zone of ictal and interictal activity in the previous tongue sensory area. Detailed neuropsychological data is presented before and after any surgical intervention to hypothesize about the extent of reorganization between epochs. We conclude that intrahemispheric cortical plasticity does occur following frontal lobe resective surgery in a teenager with medically refractory seizures.}, Doi = {10.3390/brainsci3041597}, Key = {fds271049} } @article{fds271054, Author = {Alvarez, O and Yovetich, NA and Scott, JP and Owen, W and Miller, ST and Schultz, W and Lockhart, A and Aygun, B and Flanagan, J and Bonner, M and Mueller, BU and Ware, RE and Investigators of the Stroke With Transfusions Changing to Hydroxyurea Clinical Trial (SWiTCH)}, Title = {Pain and other non-neurological adverse events in children with sickle cell anemia and previous stroke who received hydroxyurea and phlebotomy or chronic transfusions and chelation: results from the SWiTCH clinical trial.}, Journal = {Am J Hematol}, Volume = {88}, Number = {11}, Pages = {932-938}, Year = {2013}, Month = {November}, ISSN = {0361-8609}, url = {http://dx.doi.org/10.1002/ajh.23547}, Abstract = {To compare the non-neurological events in children with sickle cell anemia (SCA) and previous stroke enrolled in SWiTCH. The NHLBI-sponsored Phase III multicenter randomized clinical trial stroke with transfusions changing to hydroxyurea (SWiTCH) (ClinicalTrials.gov NCT00122980) compared continuation of chronic blood transfusion/iron chelation to switching to hydroxyurea/phlebotomy for secondary stroke prevention and management of iron overload. All randomized children were included in the analysis (intention to treat). The Fisher's Exact test was used to compare the frequency of subjects who experienced at least one SCA-related adverse event (AE) or serious adverse event (SAE) in each arm and to compare event rates. One hundred and thirty three subjects, mean age 13 ± 3.9 years (range 5.2-19.0 years) and mean time of 7 years on chronic transfusion at study entry, were randomized and treated. Numbers of subjects experiencing non-neurological AEs were similar in the two treatment arms, including SCA-related events, SCA pain events, and low rates of acute chest syndrome and infection. However, fewer children continuing transfusion/chelation experienced SAEs (P = 0.012), SCA-related SAEs (P = 0.003), and SCA pain SAEs (P = 0.016) as compared to children on the hydroxyurea/phlebotomy arm. The timing of phlebotomy did not influence SAEs. Older age at baseline predicted having at least 1 SCA pain event. Patients with recurrent neurological events during SWiTCH were not more likely to experience pain. In children with SCA and prior stroke, monthly transfusions and daily iron chelation provided superior protection against acute vaso-occlusive pain SAEs when compared to hydroxyurea and monthly phlebotomy.}, Doi = {10.1002/ajh.23547}, Key = {fds271054} } @article{fds271057, Author = {Palmer, SL and Armstrong, C and Onar-Thomas, A and Wu, S and Wallace, D and Bonner, MJ and Schreiber, J and Swain, M and Chapieski, L and Mabbott, D and Knight, S and Boyle, R and Gajjar, A}, Title = {Processing speed, attention, and working memory after treatment for medulloblastoma: an international, prospective, and longitudinal study.}, Journal = {J Clin Oncol}, Volume = {31}, Number = {28}, Pages = {3494-3500}, Year = {2013}, Month = {October}, url = {http://www.ncbi.nlm.nih.gov/pubmed/23980078}, Abstract = {PURPOSE: The current study prospectively examined processing speed (PS), broad attention (BA), and working memory (WM) ability of patients diagnosed with medulloblastoma over a 5-year period. PATIENTS AND METHODS: The study included 126 patients, ages 3 to 21 years at diagnosis, enrolled onto a collaborative protocol for medulloblastoma. Patients were treated with postsurgical risk-adapted craniospinal irradiation (n = 36 high risk [HR]; n = 90 average risk) followed by four cycles of high-dose chemotherapy with stem-cell support. Patients completed 509 neuropsychological evaluations using the Woodcock-Johnson Tests of Cognitive Abilities Third Edition (median of three observations per patient). RESULTS: Linear mixed effects models revealed that younger age at diagnosis, HR classification, and higher baseline scores were significantly associated with poorer outcomes in PS. Patients treated as HR and those with higher baseline scores are estimated to have less favorable outcomes in WM and BA over time. Parent education and marital status were significantly associated with BA and WM baseline scores but not change over time. CONCLUSION: Of the three key domains, PS was estimated to have the lowest scores at 5 years after diagnosis. Identifying cognitive domains most vulnerable to decline should guide researchers who are aiming to develop efficacious cognitive intervention and rehabilitation programs, thereby improving the quality of survivorship for the pediatric medulloblastoma population.}, Doi = {10.1200/JCO.2012.47.4775}, Key = {fds271057} } @article{fds271053, Author = {Harrell, W and Eack, S and Hooper, SR and Keshavan, MS and Bonner, MS and Schoch, K and Shashi, V}, Title = {Feasibility and preliminary efficacy data from a computerized cognitive intervention in children with chromosome 22q11.2 deletion syndrome.}, Journal = {Res Dev Disabil}, Volume = {34}, Number = {9}, Pages = {2606-2613}, Year = {2013}, Month = {September}, url = {http://www.ncbi.nlm.nih.gov/pubmed/23751300}, Abstract = {Children with chromosome 22q11.2 deletion syndrome (22q11DS) are significantly impaired in their academic performance and functionality due to cognitive deficits, especially in attention, memory, and other facets of executive function. Compounding these cognitive deficits is the remarkably high risk of major psychoses, occurring in 25% of adolescents and adults with the disorder. There are currently no evidence-based interventions designed to improve the cognitive deficits in these individuals. We implemented a neuroplasticity-based computerized cognitive remediation program for 12 weeks in 13 adolescents with 22q11DS, assessed feasibility, and measured changes in cognition before and after the intervention compared to a control group of 10 age- and gender-matched children with 22q11DS. Our results indicated that despite their cognitive impairments, this intervention is feasible in children with 22q11DS, with high rates of adherence and satisfaction. Our preliminary analyses indicate that gains in cognition occur with the intervention. Further study in a larger randomized controlled trial would enable assessment of efficacy of this novel intervention.}, Doi = {10.1016/j.ridd.2013.05.009}, Key = {fds271053} } @article{fds271090, Author = {Hardy, KK and Willard, VW and Allen, TM and Bonner, MJ}, Title = {Working memory training in survivors of pediatric cancer: a randomized pilot study.}, Journal = {Psychooncology}, Volume = {22}, Number = {8}, Pages = {1856-1865}, Year = {2013}, Month = {August}, ISSN = {1057-9249}, url = {http://dx.doi.org/10.1002/pon.3222}, Abstract = {OBJECTIVES: Survivors of pediatric brain tumors and acute lymphoblastic leukemia (ALL) are at increased risk for neurocognitive deficits, but few empirically supported treatment options exist. We examined the feasibility and preliminary efficacy of a home-based, computerized working memory training program, CogmedRM, with survivors of childhood cancer. METHODS: Survivors of brain tumors or ALL (n = 20) with identified deficits in attention and/or working memory were randomized to either the success-adapted computer intervention or a non-adaptive, active control condition. Specifically, children in the adaptive condition completed exercises that became more challenging with each correct trial, whereas those in the non-adaptive version trained with exercises that never increased in difficulty. All participants were asked to complete 25 training sessions at home, with weekly, phone-based coaching support. Brief assessments were completed pre-intervention and post-intervention; outcome measures included both performance-based and parent-report measures of working memory and attention. RESULTS: Eighty-five percent of survivors were compliant with the intervention, with no adverse events reported. After controlling for baseline intellectual functioning, survivors who completed the intervention program evidenced significant post-training improvements in their visual working memory and in parent-rated learning problems compared with those in the active control group. No differences in verbal working memory functioning were evident between groups, however. CONCLUSIONS: Home-based, computerized cognitive training demonstrates good feasibility and acceptability in our sample. Children with higher intellectual functioning at baseline appeared to benefit more from the training, although further study is needed to clarify the strength, scope, and particularly the generalizability of potential treatment effects.}, Doi = {10.1002/pon.3222}, Key = {fds271090} } @article{fds271050, Author = {Anderson, LM and Allen, TM and Andrzejewski, L and Thornburg, CD and Bonner, MJ}, Title = {Fatigue in Children with Sickle Cell Disease: Impact on Quality of Life}, Journal = {JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS}, Volume = {34}, Number = {6}, Pages = {S1-S1}, Publisher = {LIPPINCOTT WILLIAMS & WILKINS}, Year = {2013}, Month = {July}, ISSN = {0196-206X}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000330358800004&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271050} } @article{fds271094, Author = {Brinkman, TM and Palmer, SL and Chen, S and Zhang, H and Evankovich, K and Swain, MA and Bonner, MJ and Janzen, L and Knight, S and Armstrong, CL and Boyle, R and Gajjar, A}, Title = {Parent-reported social outcomes after treatment for pediatric embryonal tumors: a prospective longitudinal study.}, Journal = {J Clin Oncol}, Volume = {30}, Number = {33}, Pages = {4134-4140}, Year = {2012}, Month = {November}, ISSN = {0732-183X}, url = {http://dx.doi.org/10.1200/JCO.2011.40.6702}, Abstract = {PURPOSE: To examine longitudinal parent-reported social outcomes for children treated for pediatric embryonal brain tumors. PATIENTS AND METHODS: Patients (N=220) were enrolled onto a multisite clinical treatment protocol. Parents completed the Child Behavior Checklist/6-18 at the time of their child's diagnosis and yearly thereafter. A generalized linear mixed effects model regression approach was used to examine longitudinal changes in parent ratings of social competence, social problems, and withdrawn/depressed behaviors with demographic and treatment factors as covariates. RESULTS: During the 5-year period following diagnosis and treatment, few patients were reported to have clinically elevated scores on measures of social functioning. Mean scores differed significantly from population norms, yet remained within the average range. Several factors associated with unfavorable patterns of change in social functioning were identified. Patients with high-risk treatment status had a greater increase in parent-reported social problems (P=.001) and withdrawn/depressed behaviors (P=.01) over time compared with average-risk patients. Patients with posterior fossa syndrome had greater parent-reported social problems over time (P=.03). Female patients showed higher withdrawn/depressed scores over time compared with male patients (P<.001). Patient intelligence, age at diagnosis, and parent education level also contributed to parent report of social functioning. CONCLUSION: Results of this study largely suggest positive social adjustment several years after diagnosis and treatment of a pediatric embryonal tumor. However, several factors, including treatment risk status and posterior fossa syndrome, may be important precursors of long-term social outcomes. Future research is needed to elucidate the trajectory of social functioning as these patients transition into adulthood.}, Doi = {10.1200/JCO.2011.40.6702}, Key = {fds271094} } @article{fds271097, Author = {Brown, RT and Shaftman, SR and Tilley, BC and Anthony, KK and Kral, MC and Maxson, B and Mee, L and Bonner, MJ and Vogler, LB and Schanberg, LE and Connelly, MA and Wagner, JL and Silver, RM and Nietert, PJ}, Title = {The health education for lupus study: a randomized controlled cognitive-behavioral intervention targeting psychosocial adjustment and quality of life in adolescent females with systemic lupus erythematosus.}, Journal = {Am J Med Sci}, Volume = {344}, Number = {4}, Pages = {274-282}, Year = {2012}, Month = {October}, url = {http://www.ncbi.nlm.nih.gov/pubmed/22996139}, Abstract = {INTRODUCTION: To examine in a randomize controlled feasibility clinical trial the efficacy of a cognitive-behavioral intervention designed to manage pain, enhance disease adjustment and adaptation and improve quality of life among female adolescents with systemic lupus erythematosus. METHODS: Female adolescents (n = 53) ranging in age from 12 to 18 years were randomly assigned to 1 of 3 groups including a cognitive-behavioral intervention, an education-only arm and a no-contact control group. Participants were assessed at baseline, postintervention and at 3- and 6-month intervals after completion of the intervention. RESULTS: No significant differences were revealed among the 3 treatment arms for any of the dependent measures at any of the assessment points. For the mediator variables, a posthoc secondary analysis did reveal increases in coping skills from baseline to postintervention among the participants in the cognitive-behavioral intervention group compared with both the no-contact control group and the education-only group. CONCLUSION: Although no differences were detected in the primary outcome, a possible effect on coping of female adolescents with systemic lupus erythematosus was detected in this feasibility study. Whether the impact of training in the area of coping was of sufficient magnitude to generalize to other areas of functioning, such as adjustment and adaptation, is unclear. Future phase III randomized trials will be needed to assess additional coping models and to evaluate the dose of training and its influence on pain management, adjustment and health-related quality of life.}, Doi = {10.1097/MAJ.0b013e3182449be9}, Key = {fds271097} } @article{fds271093, Author = {Ashley, DM and Merchant, TE and Strother, D and Zhou, T and Duffner, P and Burger, PC and Miller, DC and Lyon, N and Bonner, MJ and Msall, M and Buxton, A and Geyer, R and Kun, LE and Coleman, L and Pollack, IF}, Title = {Induction chemotherapy and conformal radiation therapy for very young children with nonmetastatic medulloblastoma: Children's Oncology Group study P9934.}, Journal = {J Clin Oncol}, Volume = {30}, Number = {26}, Pages = {3181-3186}, Year = {2012}, Month = {September}, ISSN = {0732-183X}, url = {http://dx.doi.org/10.1200/JCO.2010.34.4341}, Abstract = {PURPOSE: P9934 was a prospective trial of systemic chemotherapy, second surgery, and conformal radiation therapy (CRT) limited to the posterior fossa and primary site for children between 8 months and 3 years old with nonmetastatic medulloblastoma. The study was open from June 2000 until June 2006. PATIENTS AND METHODS: After initial surgery, children received four cycles of induction chemotherapy, followed by age- and response-adjusted CRT to the posterior fossa (18 or 23.4 Gy) and tumor bed (cumulative 50.4 or 54 Gy) and maintenance chemotherapy. Neurodevelopmental outcomes were evaluated and event-free survival (EFS) results were directly compared with a previous study of multiagent chemotherapy without irradiation (Pediatric Oncology Group [POG] trial 9233). RESULTS: Seventy-four patients met eligibility requirements. The 4-year EFS and overall survival probabilities were 50% ± 6% and 69% ± 5.5%, respectively, which compared favorably to the results from POG 9233. Analysis showed that the desmoplastic/nodular subtype was a favorable factor in predicting survival. Our 4-year EFS rate was 58% ± 8% for patients with desmoplasia. Whereas seven of 10 patients who had disease progression before CRT had primary-site failure, 15 of 19 patients who progressed after CRT had distant-site failure. Neurodevelopmental assessments did not show a decline in cognitive or motor function after protocol-directed chemotherapy and CRT. CONCLUSION: The addition of CRT to postoperative chemotherapy in young children with nonmetastatic medulloblastoma increased event-free survival compared with the use of postoperative chemotherapy alone. Future studies will use histopathologic typing (desmoplastic/nodular versus nondesmoplastic/nodular) to stratify patients for therapy by risk of relapse.}, Doi = {10.1200/JCO.2010.34.4341}, Key = {fds271093} } @article{fds271092, Author = {Panepinto, JA and Bonner, M}, Title = {Health-related quality of life in sickle cell disease: past, present, and future.}, Journal = {Pediatr Blood Cancer}, Volume = {59}, Number = {2}, Pages = {377-385}, Year = {2012}, Month = {August}, ISSN = {1545-5009}, url = {http://dx.doi.org/10.1002/pbc.24176}, Abstract = {Health-related quality of life (HRQL) is defined as the patient's appraisal of how his/her well being and level of functioning, compared to the perceived ideal, are affected by individual health. The study of HRQL in children and adults with sickle cell disease (SCD) has begun to flourish. Given the devastating complications of the disease and other co-morbid factors patients experience that influence HRQL, it is increasingly important to understand HRQL. The focus of this critical review was to examine past and current research in HRQL in SCD where a validated instrument was used. In addition, future directions for HRQL in SCD are explored.}, Doi = {10.1002/pbc.24176}, Key = {fds271092} } @article{fds271091, Author = {Palmer, SL and Lesh, S and Wallace, D and Bonner, MJ and Swain, M and Chapieski, L and Janzen, L and Mabbott, D and Knight, S and Boyle, R and Armstrong, CL and Gajjar, A}, Title = {How parents cope with their child's diagnosis and treatment of an embryonal tumor: results of a prospective and longitudinal study.}, Journal = {J Neurooncol}, Volume = {105}, Number = {2}, Pages = {253-259}, Year = {2011}, Month = {November}, ISSN = {0167-594X}, url = {http://dx.doi.org/10.1007/s11060-011-0574-9}, Abstract = {The current study reports longitudinal coping responses among parents of children diagnosed with an embryonal brain tumor. Patients (n = 219) were enrolled on a treatment protocol for a pediatric embryonal brain tumor. Their parents (n = 251) completed the Coping Response Inventory at time of their child's diagnosis and yearly thereafter, resulting in 502 observations. Outcomes were examined with patient and parent age at diagnosis, patient risk, parent gender and education as covariates. At the time of diagnosis, the highest observed coping method was seeking guidance with well above average scores (T = 61.6). Over time, younger parents were found to seek guidance at a significantly higher rate than older parents (P = .016) and the use of acceptance resignation and seeking alternative results by all parents significantly increased (P = .011 and P < .0001 respectively). The use of emotional discharge was also observed above average at time of diagnosis (T = 55.4) with younger fathers being more likely to exhibit emotional discharge than older fathers (P = .002). Differences in coping according to age of the patient and parent education level are also discussed. Results show a high need for guidance, and above average emotional discharge, especially among younger parents. It is imperative for the healthcare team to lead with accurate information so that these parents may make informed decisions about the care of their child. This need remains high years after diagnosis. Therefore it is critical to continue a consistent level of effective communication and support, even following treatment.}, Doi = {10.1007/s11060-011-0574-9}, Key = {fds271091} } @article{fds271088, Author = {Hubal, RC and Bonner, MJ and Hardy, KK and Fitzgerald, DP and Willard, VW and Allen, TM}, Title = {Technical aspects and testing of a program to assess deficits in facial expression recognition in childhood cancer survivors}, Journal = {Journal of Cyber Therapy and Rehabilitation}, Volume = {4}, Number = {3}, Pages = {363-369}, Year = {2011}, Month = {October}, ISSN = {1784-9934}, Abstract = {The research presented here focuses on the ease of use of an instrument's interface for a target pediatric population, where participants were asked to interpret virtual character facial expressions. Fortyone children, both pediatric cancer survivors and healthy recruits, took part in six tasks that had them describe or express their confidence in descriptions of different facial expressions, portrayed either overtly or subtly and dynamically or statically by eight virtual characters. In this test of usability and feasibility, childhood cancer survivors performed comparably to healthy participants, suggesting that this instrument is feasible for use with cancer patients. © Virtual Reality Medical Institute.}, Key = {fds271088} } @article{fds271067, Author = {Allen, TM and Willard, VW and Hardy, KK and Bonner, MJ}, Title = {THE RELATIONSHIP BETWEEN NEUROCOGNITIVE ABILITY AND PSYCHOSOCIAL FUNCTIONING IN CHILDREN WITH NEUROFIBROMATOSIS TYPE 1}, Journal = {ANNALS OF BEHAVIORAL MEDICINE}, Volume = {41}, Pages = {S180-S180}, Publisher = {SPRINGER}, Year = {2011}, Month = {April}, ISSN = {0883-6612}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000289297701189&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271067} } @article{fds271086, Author = {Hardy, KK and Willard, VW and Bonner, MJ}, Title = {Computerized cognitive training in survivors of childhood cancer: a pilot study.}, Journal = {J Pediatr Oncol Nurs}, Volume = {28}, Number = {1}, Pages = {27-33}, Year = {2011}, url = {http://www.ncbi.nlm.nih.gov/pubmed/20966158}, Abstract = {The objective of the current study was to pilot a computerized cognitive training program, Captain's Log, in a small sample of survivors of childhood cancer. A total of 9 survivors of acute lymphoblastic leukemia and brain tumors with attention and working memory deficits were enrolled in a home-based 12-week cognitive training program. Survivors returned for follow-up assessments postintervention and 3 months later. The intervention was associated with good feasibility and acceptability. Participants exhibited significant increases in working memory and decreases in parent-rated attention problems following the intervention. Findings indicate that home-based, computerized cognitive intervention is a promising intervention for survivors with cognitive late effects; however, further study is warranted with a larger sample.}, Doi = {10.1177/1043454210377178}, Key = {fds271086} } @article{fds271087, Author = {Palmer, SL and Hassall, T and Evankovich, K and Mabbott, DJ and Bonner, M and Deluca, C and Cohn, R and Fisher, MJ and Morris, EB and Broniscer, A and Gajjar, A}, Title = {Neurocognitive outcome 12 months following cerebellar mutism syndrome in pediatric patients with medulloblastoma.}, Journal = {Neuro Oncol}, Volume = {12}, Number = {12}, Pages = {1311-1317}, Year = {2010}, Month = {December}, ISSN = {1522-8517}, url = {http://dx.doi.org/10.1093/neuonc/noq094}, Abstract = {The aim is to prospectively assess early neurocognitive outcome of children who developed cerebellar mutism syndrome (CMS) following surgical resection of a posterior fossa embryonal tumor, compared with carefully matched control patients. Children who were enrolled on an ongoing IRB-approved protocol for treatment of embryonal tumors, were diagnosed with postoperative CMS, and had completed prospectively planned neuropsychological evaluation at 12 months postdiagnosis were considered eligible. The cognitive outcomes of these patients were examined in comparison to patients without CMS from the same treatment protocol and matched with regard to primary diagnosis, age at diagnosis, and risk/corresponding treatment (n = 22 pairs). Seventeen were also matched according to gender, and 14 were also matched according to race. High-risk patients received 36-39.6 Gy CSI and 3D conformal boost to the primary site to 55.8-59.4 Gy. Average-risk patients received 23.4 Gy CSI and 3D conformal boost to the primary site to 55.8 Gy. Significant group differences were found on multiple cognitive outcomes. While the matched control patients exhibited performance in the average range, patients who developed CMS postsurgery were found to have significantly lower performance in processing speed, attention, working memory, executive processes, cognitive efficiency, reading, spelling, and math. Patients treated for medulloblastoma who experience postoperative CMS show an increased risk for neurocognitive impairment, evident as early as 12 months following diagnosis. This study highlights the need for careful follow-up with neuropsychological evaluation and for obtaining critical support for patients and their families.}, Doi = {10.1093/neuonc/noq094}, Key = {fds271087} } @article{fds271085, Author = {Conklin, HM and Reddick, WE and Ashford, J and Ogg, S and Howard, SC and Morris, EB and Brown, R and Bonner, M and Christensen, R and Wu, S and Xiong, X and Khan, RB}, Title = {Long-term efficacy of methylphenidate in enhancing attention regulation, social skills, and academic abilities of childhood cancer survivors.}, Journal = {J Clin Oncol}, Volume = {28}, Number = {29}, Pages = {4465-4472}, Year = {2010}, Month = {October}, ISSN = {0732-183X}, url = {http://dx.doi.org/10.1200/JCO.2010.28.4026}, Abstract = {PURPOSE: Methylphenidate (MPH) ameliorates attention problems experienced by some cancer survivors in the short term, but its long-term efficacy is unproven. PATIENTS AND METHODS: This study investigates the long-term effectiveness of maintenance doses of MPH in survivors of childhood brain tumors (n = 35) and acute lymphoblastic leukemia (n = 33) participating in a 12-month MPH trial. Measures of attention (Conners' Continuous Performance Test [CPT], Conners' Rating Scales [CRS]), academic abilities (Wechsler Individual Achievement Test [WIAT]), social skills (Social Skills Rating System [SSRS]), and behavioral problems (Child Behavior Checklist [CBCL]) were administered at premedication baseline and at the end of the MPH trial while on medication. A cancer control group composed of patients who were not administered MPH (brain tumor = 31 and acute lymphoblastic leukemia = 23) was assessed on the same measures 12 [corrected] months apart. RESULTS: For the MPH group, repeated measures analysis of variance revealed significant improvement in performance on a measure of sustained attention (CPT indices, P < .05); parent, teacher, and self-report ratings of attention (CRS indices, P < .05), and parent ratings of social skills or behavioral problems (SSRS and CBCL indices; P < .05). In contrast, the cancer control group only showed improvement on parent ratings of attention (Conners' Parent Rating Scale indices; P < .05) and social skills (SSRS and CBCL indices; P < .05). There was no significant improvement on the academic measure (WIAT) in either group. CONCLUSION: Attention and behavioral benefits of MPH for childhood cancer survivors are maintained across settings over the course of a year. Although academic gains were not identified, MPH may offer benefits in academic areas not assessed.}, Doi = {10.1200/JCO.2010.28.4026}, Key = {fds271085} } @article{fds271084, Author = {Paxton, RJ and Jones, LW and Rosoff, PM and Bonner, M and Ater, JL and Demark-Wahnefried, W}, Title = {Associations between leisure-time physical activity and health-related quality of life among adolescent and adult survivors of childhood cancers.}, Journal = {Psychooncology}, Volume = {19}, Number = {9}, Pages = {997-1003}, Year = {2010}, Month = {September}, url = {http://www.ncbi.nlm.nih.gov/pubmed/19918964}, Abstract = {OBJECTIVE: Survivors of childhood cancer are at an increased risk for reduced quality of life (QOL), yet few studies have explored factors associated with improving health-related QOL (HRQOL) in this population. We thus explored the relationship between physical activity (PA) and HRQOL among survivors of childhood cancer. METHODS: A total of 215 survivors of childhood lymphoma, leukemia, and central nervous system cancers completed mailed surveys that elicited information regarding leisure-time PA (LTPA) measured in metabolic equivalents, HRQOL, and diagnostic and demographic factors. Correlations and adjusted regression models were used to explore the relationship between LTPA and HRQOL. RESULTS: In the total sample, modest, yet significant linear associations were observed between LTPA and overall HRQOL (beta=0.17, p<0.01), as well as each of the respective subscales (beta=0.11-0.23 and p's<0.05 to <0.001). Among adolescent survivors of childhood cancer, LTPA was significantly associated with overall HRQOL (beta=0.27), cancer worry (beta=0.36), cognitive function (beta=0.32), body appearance (beta=0.29), and social function (beta=0.27) (all p's<0.05). Among adult survivors of childhood cancer, LTPA was only significantly associated with physical function (beta=0.28, p<0.001). CONCLUSIONS: Significant associations exist between LTPA and HRQOL; however, the association was stronger and observed in more domains for adolescent survivors of childhood cancer. More research is needed to determine the antecedents and consequences of PA in this population.}, Doi = {10.1002/pon.1654}, Key = {fds271084} } @article{fds271082, Author = {Conklin, HM and Helton, S and Ashford, J and Mulhern, RK and Reddick, WE and Brown, R and Bonner, M and Jasper, BW and Wu, S and Xiong, X and Khan, RB}, Title = {Predicting methylphenidate response in long-term survivors of childhood cancer: a randomized, double-blind, placebo-controlled, crossover trial.}, Journal = {J Pediatr Psychol}, Volume = {35}, Number = {2}, Pages = {144-155}, Year = {2010}, Month = {March}, ISSN = {0146-8693}, url = {http://dx.doi.org/10.1093/jpepsy/jsp044}, Abstract = {OBJECTIVE: To investigate the methylphenidate (MPH) response rate among childhood survivors of acute lymphoblastic leukemia (ALL) and brain tumors (BTs) and to identify predictors of positive MPH response. METHODS: Cancer survivors (N = 106; BT = 51 and ALL = 55) identified as having attention deficits and learning problems participated in a 3-week, double-blind, crossover trial consisting of placebo, low-dose MPH (0.3 mg/kg), and moderate-dose MPH (0.6 mg/kg). Weekly teacher and parent reports on the Conners' Rating Scales were gathered. RESULTS: Following moderate MPH dose, 45.28% of the sample was classified as responders. Findings revealed that more problems endorsed prior to the medication trial on parent and teacher ratings were predictive of positive medication response (p < .05). CONCLUSIONS: MPH significantly reduces attention problems in a subset of childhood cancer survivors. Parent and teacher ratings may assist in identifying children most likely to respond to MPH so prescribing may be optimally targeted.}, Doi = {10.1093/jpepsy/jsp044}, Key = {fds271082} } @article{fds271081, Author = {Bonner, MJ}, Title = {Health related quality of life in sickle cell disease: just scratching the surface.}, Journal = {Pediatr Blood Cancer}, Volume = {54}, Number = {1}, Pages = {1-2}, Year = {2010}, Month = {January}, url = {http://www.ncbi.nlm.nih.gov/pubmed/19785024}, Doi = {10.1002/pbc.22301}, Key = {fds271081} } @article{fds271083, Author = {Hardy, KK and Willard, VW and Watral, MA and Bonner, MJ}, Title = {Perceived social competency in children with brain tumors: comparison between children on and off therapy.}, Journal = {J Pediatr Oncol Nurs}, Volume = {27}, Number = {3}, Pages = {156-163}, Year = {2010}, url = {http://www.ncbi.nlm.nih.gov/pubmed/20147514}, Abstract = {Children with brain tumors are at risk for a number of cognitive, academic, and social difficulties as a consequence of their illness and its treatment. Of these, the least is known about social functioning, particularly over the course of the illness. Thirty children with brain tumors were evaluated using neurocognitive and psychological measures, including a measure of perceived competency. Results indicated that off-therapy brain tumor patients reported more concerns about their social competence than both a normative sample and children on treatment. Findings highlight the need for more research aimed at helping survivors cope with long-term stressors associated with their illness.}, Doi = {10.1177/1043454209357918}, Key = {fds271083} } @article{fds271078, Author = {Willard, VW and Hardy, KK and Bonner, MJ}, Title = {Gender differences in facial expression recognition in survivors of pediatric brain tumors.}, Journal = {Psychooncology}, Volume = {18}, Number = {8}, Pages = {893-897}, Year = {2009}, Month = {August}, url = {http://www.ncbi.nlm.nih.gov/pubmed/19061181}, Abstract = {OBJECTIVE: To examine the relation between gender, history of cranial radiation therapy (CRT) and facial expression recognition (FER) skill in survivors of pediatric brain tumors. METHODS: Fifty-three survivors (27 females) completed a measure of FER and an intelligence test. RESULTS: There was a significant interaction between gender and CRT on ability to interpret low-intensity facial expressions, such that females who had not had CRT made fewer errors than either females who had CRT or males. CONCLUSION: A history of CRT has a notable effect on FER skill in females: girls who received CRT performed significantly more poorly than girls who did not.}, Doi = {10.1002/pon.1502}, Key = {fds271078} } @article{fds271077, Author = {Hutchinson, KC and Willard, VW and Hardy, KK and Bonner, MJ}, Title = {Adjustment of caregivers of pediatric patients with brain tumors: a cross-sectional analysis.}, Journal = {Psychooncology}, Volume = {18}, Number = {5}, Pages = {515-523}, Year = {2009}, Month = {May}, url = {http://www.ncbi.nlm.nih.gov/pubmed/18756585}, Abstract = {OBJECTIVE: The purpose of the study was to compare the psychological adjustment of caregivers of children with brain tumors who are on-treatment with caregivers of children who are off-treatment. METHODS: Data were collected from 90 participants: 47 (52.2%) caregivers of children undergoing active treatment (on-treatment) and 43 (47.8%) caregivers of children off-treatment on measures of global psychological distress and illness and caregiving related distress. RESULTS: Results revealed that the two groups differed significantly in their reported symptoms of general psychological distress, with the off-treatment caregivers reporting significantly lower levels of general distress. However, off-treatment caregivers continued to experience elevated levels of uncertainty and caregiving burden related to their child's illness. CONCLUSIONS: There is significant evidence suggesting that the burden of caring for a child with a brain tumor is ongoing, continuing well into the off-treatment period. These results also suggest that the psychosocial functioning of these caregivers is best assessed using measures designed specifically to evaluate illness-related psychosocial functioning (e.g. the Parent Experience of Child Illness, Impact on Family Scale).}, Doi = {10.1002/pon.1421}, Key = {fds271077} } @article{fds271080, Author = {Thornburg, CD and Dixon, N and Burgett, S and Mortier, NA and Schultz, WH and Zimmerman, SA and Bonner, M and Hardy, KK and Calatroni, A and Ware, RE}, Title = {A pilot study of hydroxyurea to prevent chronic organ damage in young children with sickle cell anemia.}, Journal = {Pediatr Blood Cancer}, Volume = {52}, Number = {5}, Pages = {609-615}, Year = {2009}, Month = {May}, url = {http://www.ncbi.nlm.nih.gov/pubmed/19061213}, Abstract = {BACKGROUND: Hydroxyurea improves laboratory parameters and prevents acute clinical complications of sickle cell anemia (SCA) in children and adults, but its effects on organ function remain incompletely defined. METHODS: To assess the safety and efficacy of hydroxyurea in young children with SCA and to prospectively assess kidney and brain function, 14 young children (mean age 35 months) received hydroxyurea at a mean maximum tolerated dose (MTD) of 28 mg/kg/day. RESULTS: After a mean of 25 months, expected laboratory effects included significant increases in hemoglobin, MCV and %HbF along with significant decreases in reticulocytes, absolute neutrophil count, and bilirubin. There was no significant increase in glomerular filtration rate by DTPA clearance or Schwartz estimate. Mean transcranial Doppler (TCD) velocity changes were -25.6 cm/sec (P < 0.01) and -26.8 cm/sec (P < 0.05) in the right and left MCA vessels, respectively. At study exit, no child had conditional or abnormal TCD values, and none developed brain ischemic lesions or vasculopathy progression by MRI/MRA. Growth and neurocognitive scores were preserved and Impact-on-Family scores improved. CONCLUSIONS: These pilot data indicate hydroxyurea at MTD is well-tolerated by both children and families, and may prevent chronic organ damage in young children with SCA.}, Doi = {10.1002/pbc.21738}, Key = {fds271080} } @article{fds271076, Author = {Bonner, MJ and Hardy, KK and Willard, VW and Gururangan, S}, Title = {Additional evidence of a nonverbal learning disability in survivors of pediatric brain tumors}, Journal = {Children's Health Care}, Volume = {38}, Number = {1}, Pages = {49-63}, Publisher = {Informa UK Limited}, Year = {2009}, Month = {January}, ISSN = {0273-9615}, url = {http://dx.doi.org/10.1080/02739610802615849}, Abstract = {The purpose of the study was to further examine the utility of the nonverbal learning disability (NLD) model for characterizing deficits in pediatric brain tumor survivors. Data from measures of cognitive, academic, and social functioning were gathered from 101 survivors. Results revealed a pattern consistent with expectations based on the NLD model including stronger verbal than nonverbal intellectual and memory functioning, stronger reading than math skills, and weaknesses in visual-motor integration and processing speed. Moreover, findings support evidence of social problems in this sample. Further testing of the NLD model is needed to provide a comprehensive roadmap for assessment and intervention in pediatric cancer survivors. Copyright © Taylor & Francis Group, LLC.}, Doi = {10.1080/02739610802615849}, Key = {fds271076} } @article{fds271079, Author = {Willard, VW and Bonner, MJ and Guill, AB}, Title = {Healthy lifestyle choices after cancer treatment.}, Journal = {Cancer Treat Res}, Volume = {150}, Pages = {343-352}, Year = {2009}, ISSN = {0927-3042}, url = {http://www.ncbi.nlm.nih.gov/pubmed/19834679}, Doi = {10.1007/b109924_22}, Key = {fds271079} } @article{fds271075, Author = {Hardy, KK and Bonner, MJ and Willard, VW and Watral, MA and Gururangan, S}, Title = {Hydrocephalus as a possible additional contributor to cognitive outcome in survivors of pediatric medulloblastoma.}, Journal = {Psychooncology}, Volume = {17}, Number = {11}, Pages = {1157-1161}, Year = {2008}, Month = {November}, url = {http://www.ncbi.nlm.nih.gov/pubmed/18636431}, Abstract = {OBJECTIVES: The purpose of the study was to assess the relationship between shunted hydrocephalus and intellectual, memory and academic functioning in a group of survivors of pediatric medulloblastoma. METHODS: Data from measures of cognitive, memory, academic and visual-motor functioning were gathered retrospectively from 35 survivors. Of these survivors, 10 (28.6%) required ventriculoperitoneal-shunt placement for hydrocephalus posttumor resection. RESULTS: Results revealed that participants with shunted hydrocephalus demonstrated significantly lower IQs, lower nonverbal intellectual functioning, lower academic skills in writing and math, and impairments in visual-motor abilities when compared with those without shunt. CONCLUSIONS: These results highlight the need to explore other variables--in addition to radiation and chemotherapy--as risk factors for neurocognitive impairments in survivors. Furthermore, identification of physiological substrates underlying these deficits is needed.}, Doi = {10.1002/pon.1349}, Key = {fds271075} } @article{fds271099, Author = {Bonner, MJ and Hardy, KK and Willard, VW and Hutchinson, KC and Guill, AB}, Title = {Further validation of the parent experience of child illness scale}, Journal = {Children's Health Care}, Volume = {37}, Number = {2}, Pages = {145-157}, Publisher = {Informa UK Limited}, Year = {2008}, Month = {April}, ISSN = {0273-9615}, url = {http://dx.doi.org/10.1080/02739610802006569}, Abstract = {The objective of this research is to provide further validation of the Parent Experience of Child Illness (PECI) scale. One hundred twenty-five caregivers of patients (age < 1-17 years) diagnosed with cancer returned questionnaire data at Time 1, and 75 caregivers at Time 2. Findings provide support for the psychometric properties of the PECI, including good test-retest reliability and convergent and discriminant validity. The PECI appears to be a valid assessment tool for evaluation of the distress and perceived resources of caregivers of pediatric cancer patients. Continued evaluation is needed with other chronic illness groups. Copyright © Taylor & Francis Group, LLC.}, Doi = {10.1080/02739610802006569}, Key = {fds271099} } @article{fds271109, Author = {Hardy, KK and Bonner, MJ and Masi, R and Hutchinson, KC and Willard, VW and Rosoff, PM}, Title = {Psychosocial functioning in parents of adult survivors of childhood cancer.}, Journal = {J Pediatr Hematol Oncol}, Volume = {30}, Number = {2}, Pages = {153-159}, Year = {2008}, Month = {February}, ISSN = {1077-4114}, url = {http://www.ncbi.nlm.nih.gov/pubmed/18376269}, Abstract = {BACKGROUND: Although significant progress has been made in identifying long-term sequelae for adult survivors of childhood cancer, comparatively little attention has been paid to the functioning of their parents. In a previous study, we observed that a majority of adult survivors are accompanied to clinic visits by at least 1 parent, suggesting ongoing concern for their children's health. In the current study, we explore psychologic stressors that characterize this population and might account for this finding. PROCEDURE: Responses to measures of psychosocial functioning (ie, Brief Symptom Inventory, Impact on Family Scale, Impact of Events Scale, Parent Experience of Child Illness Scale) were compared between 27 parents of adult survivors (mean age=25.6 y) of pediatric cancer and 28 parents of current pediatric cancer patients (mean age=10.2 y) on, or within 1 year of, active treatment. RESULTS: Compared with parents of pediatric cancer patients on treatment, parents of adult survivors demonstrated few significant differences in overall psychologic functioning, posttraumatic stress symptoms, and adjustment to the disease experience. Indeed, the 2 groups differed only in their report of objective and family burden (eg, financial cost, time off from work, less time with family members), and in their levels of anger associated with the illness experience. CONCLUSIONS: Results suggest that parents who continue to accompany their adult child to clinic may remain psychologically vulnerable many years after the end of treatment, and that the impact of having a child with a life-threatening illness may not diminish even years into the child's survivorship.}, Doi = {10.1097/MPH.0b013e31815814d9}, Key = {fds271109} } @article{fds271100, Author = {Arroyave, WD and Clipp, EC and Miller, PE and Jones, LW and Ward, DS and Bonner, MJ and Rosoff, PM and Snyder, DC and Demark-Wahnefried, W}, Title = {Childhood cancer survivors' perceived barriers to improving exercise and dietary behaviors.}, Journal = {Oncol Nurs Forum}, Volume = {35}, Number = {1}, Pages = {121-130}, Year = {2008}, Month = {January}, url = {http://www.ncbi.nlm.nih.gov/pubmed/18192161}, Abstract = {PURPOSE/OBJECTIVES: To determine childhood cancer survivors' barriers to increasing exercise and consuming less fat and more fruits and vegetables, whole grains, and calcium-rich foods. DESIGN: Mailed survey. SETTING: Cases from a comprehensive cancer center. SAMPLE: Convenience sample of 144 childhood cancer survivors aged 13-35 years identified through previous research. Surveys were returned by 118 participants (82% response rate). METHODS: Descriptive statistics with chi-square tests were performed between subgroups defined by age (< 18 years and < or = 18 years) and diagnosis (leukemia, lymphoma, and central nervous system cancers). MAIN RESEARCH VARIABLES: Barriers to exercise, consuming less fat, and eating more fruits and vegetables, whole grains, and calcium-rich foods. FINDINGS: Proportionately more childhood cancer survivors reported barriers to exercise and following a low-fat diet than to consuming more fruits and vegetables, whole grains, and calcium-rich foods. Primary barriers to exercise included being too tired (57%), being too busy (53%), and not belonging to a gym (48%), whereas barriers for restricting high-fat foods were commercials that make high-fat foods look so appealing (58%) and having friends who eat a lot of high-fat foods (50%). Difficulty associated with ordering healthy foods when dining out also was a leading barrier to following a low-fat diet (50%), as well as eating more whole grains (31%), fruits and vegetables (30%), and calcium-rich foods (15%). CONCLUSIONS: Childhood cancer survivors report several barriers to exercise and consuming a low-fat diet with more fruits and vegetables, whole grains, and calcium-rich foods. IMPLICATIONS FOR NURSING: This study's findings may be helpful to nurses, health educators, and allied health professionals in developing effective interventions that promote healthful lifestyle change among childhood cancer survivors.}, Doi = {10.1188/08.ONF.121-130}, Key = {fds271100} } @article{fds271096, Author = {Bonner, MJ and Hardy, KK and Willard, VW and Anthony, KK and Hood, M and Gururangan, S}, Title = {Social functioning and facial expression recognition in survivors of pediatric brain tumors.}, Journal = {J Pediatr Psychol}, Volume = {33}, Number = {10}, Pages = {1142-1152}, Year = {2008}, url = {http://www.ncbi.nlm.nih.gov/pubmed/18390896}, Abstract = {OBJECTIVE: To assess social functioning and facial expression recognition skill in survivors of pediatric brain tumors (BT) as compared to children with juvenile rheumatoid arthritis (JRA). METHODS: The social functioning of 51 survivors of BT and 31 children with JRA was assessed using a facial expression recognition task, questionnaire ratings of social functioning, and an IQ screener. RESULTS: After controlling for estimated IQ, survivors of BT made significantly more errors interpreting adult facial expressions as compared to children with JRA. Additionally, history of therapy and diagnosis age predicted performance on the child portion of the facial recognition task. Finally, survivors of BT demonstrated significantly impaired social functioning across multiple measures when compared to children with JRA. CONCLUSIONS: Survivors of pediatric BT showed significant deficits in social functioning as compared to an illness comparison group. Errors in facial expression recognition represent another method for evaluating deficits that contribute to social outcomes.}, Doi = {10.1093/jpepsy/jsn035}, Key = {fds271096} } @article{fds271095, Author = {Edwards, CL and Raynor, RD and Feliu, M and McDougald, C and Johnson, S and Schmechel, D and Wood, M and Bennett, GG and Saurona, P and Bonner, M and Wellington, C and DeCastro, LM and Whitworth, E and Abrams, M and Logue, P and Edwards, L and Martinez, S and Whitfield, KE}, Title = {Neuropsychological assessment, neuroimaging, and neuropsychiatric evaluation in pediatric and adult patients with sickle cell disease (SCD).}, Journal = {Neuropsychiatr Dis Treat}, Volume = {3}, Number = {6}, Pages = {705-709}, Year = {2007}, Month = {December}, ISSN = {1176-6328}, url = {http://www.ncbi.nlm.nih.gov/pubmed/19300604}, Abstract = {Traditionally, neuropsychological deficits due to Sickle Cell Disease (SCD) have been understudied in adults. We have begun to suspect, however, that symptomatic and asymptomatic Cerebrovascular Events (CVE) may account for an alarming number of deficits in this population. In the current brief review, we critically evaluated the pediatric and adult literatures on the neurocognitive effects of SCD. We highlighted the studies that have been published on this topic and posit that early detection of CVE via neurocognitive testing, neuropsychiatric evaluations, and neuroimaging may significantly reduce adult cognitive and functional morbidities.}, Doi = {10.2147/ndt.s518}, Key = {fds271095} } @article{fds271101, Author = {Conklin, HM and Khan, RB and Reddick, WE and Helton, S and Brown, R and Howard, SC and Bonner, M and Christensen, R and Wu, S and Xiong, X and Mulhern, RK}, Title = {Acute neurocognitive response to methylphenidate among survivors of childhood cancer: a randomized, double-blind, cross-over trial.}, Journal = {J Pediatr Psychol}, Volume = {32}, Number = {9}, Pages = {1127-1139}, Year = {2007}, Month = {October}, ISSN = {0146-8693}, url = {http://dx.doi.org/10.1093/jpepsy/jsm045}, Abstract = {OBJECTIVE: To investigate the acute efficacy and adverse side effects of methylphenidate (MPH) among survivors of childhood cancer [acute lymphoblastic leukemia (ALL) or brain tumor (BT)] with learning impairments. METHODS: Participants (N = 122) completed a two-day, in-clinic, double-blind, cross-over trial during which they received MPH (0.60 mg/kg of body weight) and placebo that were randomized in administration order across participants. Performance was evaluated using measures of attention, memory, and academic achievement. RESULTS: A significant MPH versus placebo effect was revealed on a measure of attention, cognitive flexibility, and processing speed (Stroop Word-Color Association Test). Male gender, older age at treatment, and higher intelligence were predictive of better medication response. No significant differences were found for number or severity of adverse side effects as a function of active medication. CONCLUSIONS: MPH shows some neurocognitive benefit and is well tolerated by the majority of children surviving ALL and BT.}, Doi = {10.1093/jpepsy/jsm045}, Key = {fds271101} } @article{fds271107, Author = {Bonner, MJ and Hardy, KK and Willard, VW and Hutchinson, KC}, Title = {Brief report: psychosocial functioning of fathers as primary caregivers of pediatric oncology patients.}, Journal = {J Pediatr Psychol}, Volume = {32}, Number = {7}, Pages = {851-856}, Year = {2007}, Month = {August}, ISSN = {0146-8693}, url = {http://www.ncbi.nlm.nih.gov/pubmed/17426044}, Abstract = {OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the Brief Symptom Inventory (BSI), the Impact of Event Scale (IES), the Impact on Family Scale (IFS), the Caregiver Strain Questionnaire (CGSQ), and the Parent Experience of Child Illness (PECI) scale, to complete and return by mail. The 23 fathers who returned the questionnaire packets were compared with 23 mothers who were matched on demographic variables. RESULTS: There were no differences between groups on self-report measures of distress or illness-related parenting stress. Descriptively, however, the majority of parents were above normative means on measures of psychological distress with a significantly greater proportion of fathers endorsing elevated levels of depression on the BSI. CONCLUSION: Including fathers in pediatric psychosocial research is important and represents a growing trend in psycho-oncology.}, Doi = {10.1093/jpepsy/jsm011}, Key = {fds271107} } @article{fds271098, Author = {Edwards, and CL, and Raynor, and RD, and Feliu, and M, and McDougald, and C, and Johnson, and Schmechel, and D, and Wood, and Bennett, and GG, and Saurona, and P, and Bonner, and al, MJE}, Title = {Neuropsychological assessment, neuroimaging, and early neurocognitive evaluation in pediatric and adult patients with sickle cell disease}, Journal = {Neuropsychiatry Disease and Treatment}, Volume = {3}, Pages = {1-5}, Year = {2007}, Key = {fds271098} } @article{fds304914, Author = {Bonner, MJ and Hardy, KK and Guill, AB and McLaughlin, C and Schweitzer, H and Carter, K}, Title = {Development and validation of the parent experience of child illness.}, Journal = {J Pediatr Psychol}, Volume = {31}, Number = {3}, Pages = {310-321}, Year = {2006}, Month = {April}, ISSN = {0146-8693}, url = {http://www.ncbi.nlm.nih.gov/pubmed/15917492}, Abstract = {OBJECTIVE: To develop a measure of parent adjustment related to caring for a child with a chronic illness and to evaluate the reliability and validity of the measure with a group of parents of children with brain tumors. METHODS: One-hundred forty-nine parents of patients (age <1-17 years) diagnosed with a brain tumor were assessed using the 25-item self-report Parent Experience of Child Illness (PECI). Internal consistency, construct validity, and factor structure were assessed. RESULTS: Exploratory factor analysis yielded four theoretically coherent factors including: Guilt and Worry, Emotional Resources, Unresolved Sorrow and Anger, and Long-term Uncertainty. Internal reliability for the PECI scales ranged from .72 to .89, suggesting acceptable reliability. As evidence of construct validity, the PECI scales show significant, positive correlations with scales from established measures of parent adjustment. CONCLUSION: The PECI augments the current literature by providing a brief measure of parents' subjective distress and perceived Emotional Resources, domains that are critical but understudied in children with chronic illness and their caregivers.}, Doi = {10.1093/jpepsy/jsj034}, Key = {fds304914} } @article{fds304915, Author = {Helton, SC and Corwyn, RF and Bonner, MJ and Brown, RT and Mulhern, RK}, Title = {Factor analysis and validity of the Conners Parent and Teacher Rating Scales in childhood cancer survivors.}, Journal = {J Pediatr Psychol}, Volume = {31}, Number = {2}, Pages = {200-208}, Year = {2006}, Month = {March}, ISSN = {0146-8693}, url = {http://dx.doi.org/10.1093/jpepsy/jsj010}, Abstract = {OBJECTIVE: To examine the factor structure of the Conners Parent Rating Scale-Revised: Short Form (CPRS-R:S) and the Conners Teacher Rating Scale-Revised: Short Form (CTRS-R:S) in children who are long-term survivors of acute lymphocytic leukemia (ALL) or brain tumors (BT)and who have received central nervous system directed treatment. METHOD: Parents and teachers of 150 long-term survivors completed the CPRS-R:S or CTRS-R:S as part of a screening battery. The data were submitted to a maximum likelihood confirmatory factor analysis to test the construct validity of the scales and the forms were compared. The CPRS-R:S was also compared to selected subscales of the Achenbach Child Behavior Checklist (CBCL) for further validation. RESULTS: The analyses demonstrated an adequate fit of the original three-factor structure of the CTRS-R:S [oppositional, cognitive problems/inattention, hyperactivity]. The analyses of the CPRS-R:S suggested a less adequate fit of the original three-factor structure but principal components factor analysis yielded a three-factor solution with factors similar to those of Conners' original factor structure. Significant correlations were found between the CPRS-R:S and the selected subscales of the CBCL. CONCLUSIONS: These findings support the similar construct validity of the original CTRS-R:S and CPRS-R:S. Although significantly correlated, the CPRS-R:S and CTRS-R:S are not interchangeable in the assessment of survivors of childhood cancer.}, Doi = {10.1093/jpepsy/jsj010}, Key = {fds304915} } @article{fds271104, Author = {Reddick, WE and Shan, ZY and Glass, JO and Helton, S and Xiong, X and Wu, S and Bonner, MJ and Howard, SC and Christensen, R and Khan, RB and Pui, C-H and Mulhern, RK}, Title = {Smaller white-matter volumes are associated with larger deficits in attention and learning among long-term survivors of acute lymphoblastic leukemia.}, Journal = {Cancer}, Volume = {106}, Number = {4}, Pages = {941-949}, Year = {2006}, Month = {February}, url = {http://dx.doi.org/10.1002/cncr.21679}, Abstract = {BACKGROUND: The primary objective of this study was to test the hypothesis that survivors of childhood acute lymphoblastic leukemia (ALL) have deficits in neurocognitive performance, and smaller white-matter volumes are associated with these deficits. METHODS: The patients studied included 112 ALL survivors (84 patients who had received chemotherapy only, 28 patients who had received chemotherapy and irradiation; 63 males, 49 females; mean age +/- standard deviation, 4.1 yrs +/- 2.6 yrs at diagnosis; mean +/- standard deviation yrs since diagnosis, 6.0 +/- 3.5 yrs), and 33 healthy siblings who participated as a control group. Neurocognitive tests of attention, intelligence, and academic achievement were performed; and magnetic resonance images were obtained and subsequently were segmented to yield tissue volume measurements. Comparisons of neurocognitive measures and tissue volumes between groups were performed, and the correlations between volumes and neurocognitive performance measures were assessed. RESULTS: Most performance measures demonstrated statistically significant differences from the normative test scores, but only attention measures exceeded 1.0 standard deviation from normal. Patients who had received chemotherapy alone had significantly larger volumes of white matter than patients who had received treatment that also included cranial irradiation, but their volumes remained significantly smaller than the volumes in the control group. Smaller white-matter volumes were associated significantly with larger deficits in attention, intelligence, and academic achievement. CONCLUSIONS: Survivors of childhood ALL had significant deficits in attention and smaller white-matter volumes that were associated directly with impaired neurocognitive performance. Cranial irradiation exacerbated these deficits.}, Doi = {10.1002/cncr.21679}, Key = {fds271104} } @article{fds271060, Author = {Bonner, MJ and Hardy, KK and Willard, VW and Guill, AB}, Title = {Association between the Parent Experience of Childhood Illness (PECI) scale and clinician ratings of functioning among parents of children with cancer}, Journal = {PSYCHO-ONCOLOGY}, Volume = {15}, Number = {1}, Pages = {S41-S42}, Publisher = {JOHN WILEY & SONS LTD}, Year = {2006}, Month = {February}, ISSN = {1057-9249}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000235659000075&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271060} } @article{fds271102, Author = {Bonner, MJ and Hardy, KK and Guill, AB and McLaughlin, C and Schweitzer, H and Carter, K}, Title = {Development and validation of the ParentExperience of Illness (PECI) Questionnaire}, Journal = {Journal of Pediatric Psychology}, Volume = {31}, Number = {3}, Pages = {310-321}, Year = {2006}, ISSN = {0146-8693}, url = {http://www.ncbi.nlm.nih.gov/pubmed/15917492}, Abstract = {OBJECTIVE: To develop a measure of parent adjustment related to caring for a child with a chronic illness and to evaluate the reliability and validity of the measure with a group of parents of children with brain tumors. METHODS: One-hundred forty-nine parents of patients (age <1-17 years) diagnosed with a brain tumor were assessed using the 25-item self-report Parent Experience of Child Illness (PECI). Internal consistency, construct validity, and factor structure were assessed. RESULTS: Exploratory factor analysis yielded four theoretically coherent factors including: Guilt and Worry, Emotional Resources, Unresolved Sorrow and Anger, and Long-term Uncertainty. Internal reliability for the PECI scales ranged from .72 to .89, suggesting acceptable reliability. As evidence of construct validity, the PECI scales show significant, positive correlations with scales from established measures of parent adjustment. CONCLUSION: The PECI augments the current literature by providing a brief measure of parents' subjective distress and perceived Emotional Resources, domains that are critical but understudied in children with chronic illness and their caregivers.}, Doi = {10.1093/jpepsy/jsj034}, Key = {fds271102} } @article{fds271103, Author = {Helton, S and Corwyn, RF and Bonner, MJ and Brown, RT and Mulhern, RK}, Title = {Factor analysis and teacher rating scales in childhood cancer survivors}, Journal = {Journal of Pediatric Psychology}, Volume = {31}, Number = {2}, Pages = {200-208}, Year = {2006}, ISSN = {0146-8693}, url = {http://dx.doi.org/10.1093/jpepsy/jsj010}, Abstract = {Objective: To examine the factor structure of the Conners Parent Rating Scale - Revised: Short Form (CPRS-R:S) and the Conners Teacher Rating Scale - Revised: Short Form (CTRS-R:S) in children who are long-term survivors of acute lymphocytic leukemia (ALL) or brain tumors (BT)and who have received central nervous system directed treatment. Method: Parents and teachers of 150 long-term survivors completed the CPRS-R:S or CTRS-R:S as part of a screening battery. The data were submitted to a maximum likelihood confirmatory factor analysis to test the construct validity of the scales and the forms were compared. The CPRS-R:S was also compared to selected subscales of the Achenbach Child Behavior Checklist (CBCL) for further validation. Results: The analyses demonstrated an adequate fit of the original three-factor structure of the CTRS-R:S [oppositional, cognitive problems/inattention, hyperactivity]. The analyses of the CPRS-R:S suggested a less adequate fit of the original three-factor structure but principal components factor analysis yielded a three-factor solution with factors similar to those of Conners' original factor structure. Significant correlations were found between the CPRS-R:S and the selected subscales of the CBCL. Conclusions: These findings support the similar construct validity of the original CTRS-R:S and CPRS-R:S. Although significantly correlated, the CPRS-R:S and CTRS-R:S are not interchangeable in the assessment of survivors of childhood cancer. © The Author 2005. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved.}, Doi = {10.1093/jpepsy/jsj010}, Key = {fds271103} } @article{fds271071, Author = {Demark-Wahnefried, W and Werner, C and Clipp, EC and Guill, AB and Bonner, M and Jones, LW and Rosoff, PM}, Title = {Survivors of childhood cancer and their guardians.}, Journal = {Cancer}, Volume = {103}, Number = {10}, Pages = {2171-2180}, Year = {2005}, Month = {May}, ISSN = {0008-543X}, url = {http://www.ncbi.nlm.nih.gov/pubmed/15812823}, Abstract = {BACKGROUND: Survivors of childhood cancer are at increased risk for osteoporosis, cardiovascular disease, and second malignancies-conditions for which modifiable risk factors are recognized and lifestyle interventions have shown benefit. Although some data regarding health behaviors of this population exist, receptivity to health promotion is largely unknown. METHODS: A survey was mailed to 380 survivors (age range, 11-33 years) of childhood leukemia, lymphoma, or central nervous system carcinomas (and guardians of survivors < 18 years old) to elicit data on exercise, dietary intake of calcium, fat, and fruits and vegetables, smoking status, readiness to pursue lifestyle change, quality of life, and interest in various health interventions. RESULTS: Responses from 209 survivors (a 55% response rate) suggested that most did not meet guidelines for fruit and vegetable consumption (79%), calcium intake (68%), or exercise (52%), 42% were overweight/obese, and 84% consumed > 30% of calories from fat. Older (> 18 years) compared with younger (< 18 years) survivors were more likely to smoke (17% vs. 1%), to be obese (21.6% vs. 14.6%), and to have suboptimal calcium intakes (75.6% vs. 57.6%). No differences in lifestyle behaviors were observed between cancer groups. Compared with interventions aimed at weight control, improving self-esteem, or smoking cessation, the highest levels of interest were found consistently for interventions aimed at getting in shape and eating healthy. Survivors preferred mailed interventions to those delivered in-person, by telephone counselors, or via computers. CONCLUSIONS: Survivors of childhood cancer practiced several suboptimal health behaviors. Health promotion interventions aimed at areas of interest and delivered through acceptable channels have the potential to improve long-term health and function of this vulnerable population.}, Doi = {10.1002/cncr.21009}, Key = {fds271071} } @article{fds271072, Author = {Rosoff, PM and Werner, C and Clipp, EC and Guill, AB and Bonner, M and Demark-Wahnefried, W}, Title = {Response rates to a mailed survey targeting childhood cancer survivors: a comparison of conditional versus unconditional incentives.}, Journal = {Cancer Epidemiol Biomarkers Prev}, Volume = {14}, Number = {5}, Pages = {1330-1332}, Year = {2005}, Month = {May}, ISSN = {1055-9965}, url = {http://www.ncbi.nlm.nih.gov/pubmed/15894697}, Abstract = {OBJECTIVE: Mailed surveys are widely used to collect epidemiologic and health service data. Given that nonresponse can threaten the validity of surveys, modest incentives are often used to increase response rates. A study was undertaken among childhood cancer survivors and their parents to determine if response rate to a mailed survey differed with provision of immediate versus delayed incentives. DESIGN: A self-administered survey designed to ascertain health behaviors was mailed to 397 childhood cancer survivors (and their parents if the survivor was <18 years of age). Subjects were randomized into two groups based on gender, age, race, and cancer type. One group received a 10 US dollars incentive with their blank survey (unconditional incentive), whereas the other group received the incentive upon receipt of their completed survey (conditional incentive). If children were minors, both the parent and the child received incentives. RESULTS: No significant differences in response rates were observed with respect to gender, age, race, or cancer type. However, significant differences in response rates were observed between incentive groups, with unconditional incentives yielding significantly higher response rates than conditional incentives for child survivors who were > or =18 years (64.4% versus 49.0%), as well as younger child survivors (62.5% versus 43.6%) and their parents (64.8% versus 41.5%; all P < 0.05). CONCLUSIONS: The provision of an immediate incentive generated significantly higher response rates to this mailed health survey among childhood cancer survivors and their parents. Given that survey studies are commonly conducted across various pediatric populations, these findings may help inform the design of future pediatric survey research.}, Doi = {10.1158/1055-9965.EPI-04-0716}, Key = {fds271072} } @article{fds271105, Author = {Demark Wahnefried and W and Werner, C and Clipp, E and Guill, AB and Bonner, MJ and Rosoff, PM}, Title = {Childhood cander survivors and their guardians: Current health behaviors and receptivity to health promotion programs}, Journal = {Cancer}, Volume = {103}, Year = {2005}, Key = {fds271105} } @article{fds271106, Author = {Rosoff, PM and Werner, C and Clipp, E and Guill, AB and Bonner, MJ and Demark Wahnefried and W}, Title = {Response rates to a mailed survey targeting childhood cancer survivors}, Journal = {Cancer Epidemiology, Biomarkers and Prevention}, Volume = {14}, Pages = {1330-1332}, Year = {2005}, Key = {fds271106} } @article{fds271108, Author = {Mulhern, RK and Khan, RB and Kaplan, S and Helton, S and Christensen, R and Bonner, M and Brown, R and Xiong, X and Wu, S and Gururangan, S and Reddick, WE}, Title = {Short-term efficacy of methylphenidate: a randomized, double-blind, placebo-controlled trial among survivors of childhood cancer.}, Journal = {Journal of clinical oncology : official journal of the American Society of Clinical Oncology}, Volume = {22}, Number = {23}, Pages = {4795-4803}, Year = {2004}, Month = {December}, ISSN = {0732-183X}, url = {http://www.ncbi.nlm.nih.gov/pubmed/15570081}, Abstract = {PURPOSE: Children surviving acute lymphoblastic leukemia (ALL) and malignant brain tumors (BTs) have a higher incidence of attention and learning problems in school than do their healthy peers. The present study tests the hypothesis that the psychostimulant methylphenidate (MPH) improves cognitive and social functioning among these patients. PATIENTS AND METHODS: We report on 83 long-term survivors of ALL and BT identified as having attentional deficits on behavioral testing and parent or teacher report, and problems with academic achievement. The 47 male and 36 female patients ranged from 0.6 to 14.3 years (median, 5.4 years) of age at diagnosis and 6.7 to 17.9 years (median, 11.9 years) of age at participation. The patients (40 ALL, 43 BT) participated in a randomized, double-blind, 3-week home cross-over trial of placebo (bid), low-dose MPH (0.3 mg/kg; maximum dose, 10 mg bid), and moderate-dose MPH (0.6 mg/kg; maximum dose, 20 mg bid). The primary end points were weekly teacher and parent reports on the Conners' Rating Scales and Social Skills Rating System. RESULTS: Compared to placebo, significant improvement with MPH was reported by teachers and parents on the Conners' Rating Scales and by teachers on the Social Skills Rating System. However, no consistent advantage of moderate dose over low dose was observed. Of those participating, 66 (79.5%) of the 83 patients continued on best clinical management. CONCLUSION: Treatment with MPH can at least temporarily reduce some attentional and social deficits among survivors of childhood ALL and BT. Long-term follow-up will reveal those subsets of patients who are more likely to benefit from MPH.}, Doi = {10.1200/JCO.2004.04.128}, Key = {fds271108} } @article{fds271114, Author = {Thompson, RJ and Gustafson, KE and Bonner, MJ and Ware, RE}, Title = {Neurocognitive development of young children with sickle cell disease through three years of age.}, Journal = {J Pediatr Psychol}, Volume = {27}, Number = {3}, Pages = {235-244}, Year = {2002}, ISSN = {0146-8693}, url = {http://www.ncbi.nlm.nih.gov/pubmed/11909931}, Keywords = {Anemia, Sickle Cell • Child, Preschool • Cognition Disorders • Female • Follow-Up Studies • Helplessness, Learned • Hemoglobin SC Disease • Hemoglobin, Sickle • Humans • Infant • Infant, Newborn • Intelligence • Internal-External Control • Male • Neuropsychological Tests* • Parenting • Phenotype • Psychomotor Disorders • Risk Factors • diagnosis • genetics • psychology • psychology*}, Abstract = {OBJECTIVE: To determine (1) the neurocognitive development of children with sickle cell disease (SCD) from 6 months through 36 months of age, (2) the independent and combined contributions of biomedical risk and parenting risk to child neurocognitive functioning, and (3) the independent and combined contributions of biomedical risk, parent cognitive processes, and family functioning to parent adjustment. METHOD: The study sample included 89 African American children and their parents served through the Duke University-University of North Carolina Comprehensive Sickle Cell Center. Measures of cognitive and psychomotor development were obtained at 6, 12, 24, and 36 months of age, and parents completed self-report measures of the cognitive processes of daily stress and attributional style, psychological adjustment, and family functioning. RESULTS: There was no significant decrease in psychomotor functioning (PDI) over time but cognitive functioning (MDI) declined, with a significant decrease occurring between the 12- and 24-month assessment points. At 24 months, poorer cognitive functioning was associated with parenting risk, in terms of a learned-helplessness attributional style, and biomedical risk, in terms of HbSS phenotype. Levels of psychological distress within the clinical range were reported by 24% of the parents, and poorer parent adjustment was associated with high levels of daily stress, less knowledge about child development, lower expectations of efficacy, and HbSC phenotype. CONCLUSIONS: The findings indicate that young children with SCD are at risk for neurocognitive impairment and provide support for the initiation of early intervention studies to promote neurocognitive development.}, Doi = {10.1093/jpepsy/27.3.235}, Key = {fds271114} } @article{fds271113, Author = {Bonner, MJ and Schumacher, E and Gustafson, KE and Thompson, RJ}, Title = {The impact of sickle cell disease on cognitive functioning and learning}, Journal = {School Psychology Review}, Volume = {28}, Number = {2}, Pages = {182-193}, Year = {1999}, Month = {December}, Abstract = {Sickle Cell Disease (SCD) refers to a complex group of hereditary hematologic disorders that are most common in people of African descent (Sickle Cell Disease Guideline Panel, 1993). Although most children with SCD demonstrate adequate academic functioning, some children experience neurological insults such as strokes that can negatively affect school performance. Even in the absence of overt neurological disease, SCD puts some children at risk for neuropsychological sequelae including lowered intellectual functioning, academic skills deficits, impaired fine-motor functioning, and attentional deficits. Studies that document these deficits have evolved from descriptive summaries to more methodologically sound investigations of neuropsychological deficits with corresponding neuroradiographic findings. These studies will be reviewed to highlight the sometimes subtle and complex neuropsychological impairments found in some children with SCD. This review also will demonstrate the importance of careful monitoring and assessment of all children with SCD to facilitate early identification of that subset of children with neuropsychological sequelae. Additionally, possible indirect effects of SCD that can negatively impact school performance will be highlighted including absenteeism, psychological functioning, and pain coping. Finally, recommendations for school programming are offered to facilitate an optimal learning environment for school children with SCD.}, Key = {fds271113} } @article{fds271112, Author = {Putnam, DE and Finney, JW and Barkley, PL and Bonner, MJ}, Title = {Enhancing commitment improves adherence to a medical regimen.}, Journal = {J Consult Clin Psychol}, Volume = {62}, Number = {1}, Pages = {191-194}, Year = {1994}, Month = {February}, ISSN = {0022-006X}, url = {http://dx.doi.org/10.1037//0022-006x.62.1.191}, Abstract = {A commitment-based intervention was evaluated for improvement of adherence to a 10-day antibiotic regimen. Experimental Ss made verbal and written commitments for adherence and completed tasks designed to increase their investment in a medication regimen. Control Ss performed similarly structured tasks unrelated to the medical regimen. Adherence, measured by unannounced pill counts, was significantly higher for experimental subjects than for control Ss. Self-reported adherence was significantly correlated with posttest self-efficacy but not with pretest self-efficacy. Adherence to a medical regimen may be improved by strategies conceptually based on the investment model of commitment, which provides a useful framework for further study of adherence.}, Doi = {10.1037//0022-006x.62.1.191}, Key = {fds271112} } @article{fds271069, Author = {Finney, JW and Bonner, MJ}, Title = {The Influence of Behavioural Family Intervention on the Health of Chronically Ill Children}, Journal = {Behaviour Change}, Volume = {9}, Number = {3}, Pages = {157-170}, Publisher = {Cambridge University Press (CUP)}, Year = {1992}, Month = {January}, url = {http://dx.doi.org/10.1017/S0813483900006306}, Abstract = {Chronic illnesses in children and adolescents present difficulties for the individual and family. A family systems perspective can provide directions for assessment and intervention with these children and their families. A review is made of research on family interventions for children with juvenile rheumatoid arthritis, cancer, and insulin-dependent diabetes mellitus (IDDM), and the influence of intervention on health outcomes is discussed. Few family interventions, particularly behavioural family interventions, have been rigorously evaluated, but multisystemic models show promise for improving children's health outcomes and family adaptation to chronic illnesses. © 1992, Cambridge University Press. All rights reserved.}, Doi = {10.1017/S0813483900006306}, Key = {fds271069} } @article{fds271111, Author = {Finney, JW and Bonner, MJ}, Title = {The influence of behavioral family intervention on children's health and health care use}, Journal = {Behavior Change}, Volume = {9}, Pages = {157-170}, Year = {1992}, Key = {fds271111} } @article{fds271110, Author = {Edwards, MC and Finney, JW and Bonner, M}, Title = {Matching treatment with recurrent abdominal pain symptoms: An evaluation of dietary fiber and relaxation treatments}, Journal = {Behavior Therapy}, Volume = {22}, Number = {2}, Pages = {257-267}, Year = {1991}, Month = {January}, ISSN = {0005-7894}, url = {http://dx.doi.org/10.1016/S0005-7894(05)80181-9}, Abstract = {We evaluated whether symptoms of recurrent abdominal pain in children provide a basis for treatment selection. Subjects were assigned to dietary fiber or relaxation treatments based upon whether they presented with symptoms of constipation. Elven subjects were treated in a combined multiple baseline and A-B or A-B-C design. As a control, some subjects recived the alternative treatment first. All four subjects with symptoms of constipation showed reductions in the number of stomachaches during the dietary fiber treatment. Of the seven subjects without symptoms of constipation, one showed reductions in stomachaches during the relaxation treatment, three showed some minimal reduction that was difficult to attribute to the relaxation treatment, two responded to the dietary fiber treatment, and one spontaneously improved during baseline. Results support the effectiveness of a dietary fiber treatment for children with symptoms of constipation. Minimal support was obtained for the effectiveness of a relaxation treatment for children without symptoms of constipation. Implications, limitations, and directions for future research are discussed. © 1991 Association for Advancement of Behavior Therapy. All right reserved.}, Doi = {10.1016/S0005-7894(05)80181-9}, Key = {fds271110} } %% Chapters in Books @misc{fds312977, Author = {Ware, RE and Davis, BR and Schultz, WH and Brown, C and Aygun, B and Sarnaik, SA and Odame, I and Fuh, B and George, A and Owen, W and Luchtman-Jones, L and Rogers, ZR and Hilliard, L and Gauger, C and Piccone, CM and Lee, MT and Kwiatkowski, J and Jackson, S and Miller, ST and Roberts, CW and Heeney, MM and Kalfa, TA and Nelson, SC and Imran, H and Nottage, KA and Alvarez, OA and Rhodes, M and Thompson, AA and Rothman, J and Helton, KJ and Roberts, D and Coleman, J and Bonner, MJ and Kutlar, A and Patel, N and Wood, JC and Piller, L and Wei, P and Luden, J and Mortier, NA and Stuber, S and Luban, NLC and Cohen, AR and Pressel, SL and Adams, RJ}, Title = {TCD with Transfusions Changing to Hydroxyurea (TWiTCH): Hydroxyurea Therapy As an Alternative to Transfusions for Primary Stroke Prevention in Children with Sickle Cell Anemia}, Journal = {BLOOD}, Volume = {126}, Number = {23}, Pages = {3 pages}, Publisher = {AMER SOC HEMATOLOGY}, Year = {2015}, Month = {December}, ISSN = {0006-4971}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000368019000067&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds312977} } @misc{fds271058, Author = {Willard, VW and Hardy, KK and Allen, TM and Hwang, EI and Gururangan, S and Hostetter, SA and Bonner, MJ}, Title = {Sluggish cognitive tempo in survivors of pediatric brain tumors.}, Journal = {J Neurooncol}, Volume = {114}, Number = {1}, Pages = {71-78}, Year = {2013}, Month = {August}, ISSN = {1522-8517}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000270494800354&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Abstract = {The presence of neurocognitive late effects in survivors of pediatric brain tumors is well established. However, there remains some debate about how best to conceptualize these deficits. Sluggish cognitive tempo (SCT) is a proposed conceptual framework that has been used to describe a subset of children with ADHD who exhibit a particular profile characterized by lethargy, day dreaming and staring, and poor organization. Previous work has suggested that survivors of leukemia exhibit a similar profile, but it has not yet been examined in survivors of pediatric brain tumors. A sample of 65 survivors of pediatric brain tumors, 25 survivors of leukemia and 50 community controls completed the Child Behavior Checklist, with four items used to measure SCT. Survivors completed additional measures of neurocognitive functioning. Survivors of brain tumors demonstrated significantly greater symptoms of SCT than survivors of leukemia or controls. SCT was associated with attention problems and working memory deficits and the presence of a VP-shunt. Results provided conditional support for the presence of SCT in survivors of brain tumors, with further research needed to determine the clinical utility of the framework.}, Doi = {10.1007/s11060-013-1149-8}, Key = {fds271058} } @misc{fds271064, Author = {Palmer, SL and Lesh, S and Wallace, D and Bonner, MJ and Swain, M and Chapieski, L and Mabbott, DJ and Knight, S and Boyle, R and Armstrong, C and Gajjar, A}, Title = {HOW DO PARENTS COPE WITH THEIR CHILD'S DIAGNOSIS AND TREATMENT OF AN EMBRYONAL TUMOR? RESULTS OF A PROSPECTIVE AND LONGITUDINAL STUDY}, Journal = {NEURO-ONCOLOGY}, Volume = {12}, Number = {6}, Pages = {II16-II16}, Publisher = {OXFORD UNIV PRESS INC}, Year = {2010}, Month = {June}, ISSN = {1522-8517}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000278817700077&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271064} } @misc{fds271066, Author = {Thornburg, CD and Dixon, N and Burgett, S and Mortier, NA and Zimmerman, SA and Bonner, MJ and Calatroni, A and Ware, RE}, Title = {Efficacy of Hydroxyurea To Prevent Organ Damage in Young Children with Sickle Cell Anemia.}, Journal = {Blood}, Volume = {110}, Number = {11}, Pages = {3386-3386}, Publisher = {American Society of Hematology}, Year = {2007}, Month = {November}, ISSN = {0006-4971}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000251100804423&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Abstract = {<jats:title>Abstract</jats:title> <jats:p>Hydroxyurea (HU) prevents many acute complications of sickle cell anemia (SCA) in adults and children, but its potential to delay or prevent chronic organ damage has not been defined. The objectives of this prospective IRB-approved study were to assess the safety and efficacy of HU in young children with SCA (age 18 mon–5 years) and to determine whether 2 years of therapy preserves renal function, reduces transcranial doppler ultrasound (TCD) values, and prevents development of brain ischemia as evidenced by magnetic resonance imaging/angiography (MRI/MRA). Fourteen children with SCA (11 male, 3 female; mean age 35±11 mon) enrolled and underwent evaluation including blood counts, %HbF measurement, determination of the glomerular filtration rate (GFR) by radionuclide DTPA clearance and Schwartz estimate, TCD mean cerebral artery (MCA) velocities, and brain MRI/MRA. HU was started at 20 mg/kg/day and escalated by 5mg/kg/day every 8 weeks to a maximum tolerated dose (MTD) or 30 mg/kg/day (mean dose 28±4 mg/kg). Children were evaluated initially every 4 weeks. All baseline tests were repeated at study exit (mean time 25±3 months). HU was tolerated well by all children. Hematological changes occurred as expected, with significant increases observed in hemoglobin concentration, MCV, and %HbF and significant decreases in reticulocytes, WBC, and neutrophils. The average GFR value did not rise as expected in this age range; the DTPA GFR decreased by 5.1 mL/min/1.73 m2 (p=0.26) with only 3 of 11 exit studies exceeding 150 mL/min/1.73 m2 and the Schwartz estimate increased by 16.5 mL/min/1.73 m2 (p=0.17). During HU therapy, the average TCD values significantly decreased with a mean decrease of 26±28 cm/sec in the right MCA (p<.01) and mean decrease of 27±33 in the left MCA (p<.05). At study entry, 3 children had conditional TCD velocities, but all were normal at study exit. One child had mild small vessel ischemic changes on MRI at study entry that were unchanged at study exit. Two children had mild MRA changes that were stable or improved at the end of the study. All children had normal or improved rates of growth and development during therapy. Two children required PRBC transfusion for acute events (acute chest syndrome and hypoplastic anemia during a viral illness). There was one episode of Moraxella catarrhalis bacteremia that was unrelated to myelosuppression and responded to antibiotic therapy. One child was removed from study at week 82 due to the development of thrombocytopenia and hypersplenism, another had acute splenic sequestration but continued HU without recurrence, and a third child with previous acute splenic sequestration did not have recurrence during the study. In conclusion, HU therapy appears to be well tolerated in young children with SCA. In addition to providing beneficial changes in hematological parameters, HU has salutary effects on both the kidney and brain. HU therapy was associated with a stable GFR value during a time interval when hyperfiltration develops, and led to significant decreases in TCD velocities. However, preservation of splenic tissue could lead to an increased risk of splenic complications. Follow-up studies are warranted to determine if long-term HU therapy can preserve or restore organ function in this patient population.</jats:p>}, Doi = {10.1182/blood.v110.11.3386.3386}, Key = {fds271066} } @misc{fds271059, Author = {Hardy, KK and Bonner, MJ and Willard, VW and Hutchinson, KC}, Title = {Parent and family psychosocial adjustment as a function of pediatric tumor type}, Journal = {NEURO-ONCOLOGY}, Volume = {8}, Number = {4}, Pages = {479-479}, Publisher = {DUKE UNIV PRESS}, Year = {2006}, Month = {October}, ISSN = {1522-8517}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000240877301339&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271059} } @misc{fds271062, Author = {Hardy, KK and Bonner, MJ and Willard, VW}, Title = {Hydrocephalus as an additional risk factor for academic and intellectual outcome in survivors of pediatric medulloblastoma treated with radiation}, Journal = {NEURO-ONCOLOGY}, Volume = {8}, Number = {4}, Pages = {479-480}, Publisher = {DUKE UNIV PRESS}, Year = {2006}, Month = {October}, ISSN = {1522-8517}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000240877301340&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271062} } @misc{fds271065, Author = {Bonner, MJ and Hardy, KK and Willard, VW}, Title = {Fatigue in adolescent survivors of pediatric cancer}, Journal = {NEURO-ONCOLOGY}, Volume = {8}, Number = {4}, Pages = {476-476}, Publisher = {DUKE UNIV PRESS}, Year = {2006}, Month = {October}, ISSN = {1522-8517}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000240877301327&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271065} } @misc{fds271068, Author = {Hood, MA and Anthony, KK and Bonner, MJ and Hardy, KK and Willard, VW and Schanberg, LE}, Title = {Social and nonverbal functioning in children with juvenile rheumatoid arthritis (JRA).}, Journal = {ARTHRITIS AND RHEUMATISM}, Volume = {54}, Number = {9}, Pages = {S506-S506}, Publisher = {WILEY-LISS}, Year = {2006}, Month = {September}, ISSN = {0004-3591}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000240877202350&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271068} } @misc{fds271063, Author = {Bonner, MJ and Hardy, KK and Guill, AB and Willard, VW and Carter, KE and Gururangan, S}, Title = {Quality of life in pediatric brain tumor survivors}, Journal = {NEURO-ONCOLOGY}, Volume = {7}, Number = {3}, Pages = {336-336}, Publisher = {DUKE UNIV PRESS}, Year = {2005}, Month = {July}, ISSN = {1522-8517}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000230463900219&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271063} } @misc{fds271061, Author = {Hardy, KK and Bonner, MJ and Bromell, L and Gururangan, S}, Title = {Preliminary evidence of nonverbal learning disability in survivors of pediatric brain tumors}, Journal = {NEURO-ONCOLOGY}, Volume = {6}, Number = {4}, Pages = {446-446}, Publisher = {DUKE UNIV PRESS}, Year = {2004}, Month = {October}, ISSN = {1522-8517}, url = {http://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000224332400511&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=47d3190e77e5a3a53558812f597b0b92}, Key = {fds271061} } @misc{fds359832, Author = {Bonner, MJ and Hardy, KK and Ezell, E and Ware, R}, Title = {Hematological disorders: Sickle cell disease and hemophilia}, Pages = {241-261}, Booktitle = {Handbook of Pediatric Psychology in School Settings}, Year = {2003}, Month = {September}, ISBN = {9780805839173}, Key = {fds359832} } | |
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