Skip to main content

Melanie Jean Bonner

Professor in Psychiatry and Behavioral Sciences
Psychiatry, Child & Family Mental Health & Community Psychiatry
Box 3527 Med Ctr, Durham, NC 27710
Box 3527 Med Ctr, Lakeview 2608 Erwin Rd, Durham, NC 27705

Selected Publications


Usability and Acceptability of the QuestLeukemia Mobile Application: A Pilot Study for An Educational and Psychological Intervention for Children with Chronic Illnesses.

Journal Article J Pediatr Hematol Oncol Nurs · 2022 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 a ... Full text Link to item Cite

Early onset severe ATP1A2 epileptic encephalopathy: Clinical characteristics and underlying mutations.

Journal Article Epilepsy Behav · March 2021 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 th ... Full text Open Access Link to item Cite

Characterization of Severe and Extreme Behavioral Problems in Patients With Alternating Hemiplegia of Childhood.

Journal Article Pediatr Neurol · October 2020 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 occurren ... Full text Link to item Cite

Social impairments in alternating hemiplegia of childhood.

Journal Article Dev Med Child Neurol · July 2020 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 f ... Full text Link to item Cite

Psychosocial Burden of Childhood Sickle Cell Disease on Caregivers in Kenya.

Journal Article J Pediatr Psychol · June 1, 2020 OBJECTIVES: 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 ... Full text Link to item Cite

Computerized cognitive training in pediatric sickle cell disease: A randomized controlled pilot study.

Journal Article Clinical Practice in Pediatric Psychology · January 1, 2020 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 ... Full text Cite

Cognitive Implications of Ototoxicity in Pediatric Patients With Embryonal Brain Tumors.

Journal Article J Clin Oncol · June 20, 2019 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 ... Full text Link to item Cite

Parenting a child with cancer: a couple-based approach.

Journal Article Transl Behav Med · May 16, 2019 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 fam ... Full text Link to item Cite

Cognitive, adaptive, and behavioral profiles and management of alternating hemiplegia of childhood.

Journal Article Dev Med Child Neurol · May 2019 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 entere ... Full text Link to item Cite

Further evidence for the involvement of EFL1 in a Shwachman-Diamond-like syndrome and expansion of the phenotypic features.

Journal Article Cold Spring Harb Mol Case Stud · October 2018 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 i ... Full text Link to item Cite

Mobile health intervention for youth with sickle cell disease: Impact on adherence, disease knowledge, and quality of life.

Journal Article Pediatr Blood Cancer · August 2018 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 ... Full text Link to item Cite

Posterior fossa syndrome and long-term neuropsychological outcomes among children treated for medulloblastoma on a multi-institutional, prospective study.

Journal Article Neuro Oncol · November 29, 2017 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 neuropsycho ... Full text Link to item Cite

[Formula: see text]Executive functioning and health-related quality of life in pediatric sickle cell disease.

Journal Article Child Neuropsychol · November 2017 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 ... Full text Link to item Cite

Plasma cytokines associated with febrile status epilepticus in children: A potential biomarker for acute hippocampal injury.

Journal Article Epilepsia · June 2017 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 childr ... Full text Link to item Cite

Social functioning in survivors of pediatric brain tumors: Contribution of neurocognitive and social-cognitive skills

Journal Article Children's Health Care · April 3, 2017 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 measure ... Full text Cite

Cognitive functioning one month and one year following febrile status epilepticus.

Journal Article Epilepsy Behav · November 2016 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 meas ... Full text Link to item Cite

De Novo Truncating Variants in ASXL2 Are Associated with a Unique and Recognizable Clinical Phenotype.

Journal Article Am J Hum Genet · October 6, 2016 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 ... Full text Link to item Cite

Benefit Finding in Maternal Caregivers of Pediatric Cancer Survivors: A Mixed Methods Approach.

Journal Article J Pediatr Oncol Nurs · September 2016 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 quantit ... Full text Link to item Cite

Usability and Acceptability of the QuestLeukemia Mobile Application: A Pilot Study for An Educational and Psychological Intervention for Children with Chronic Illnesses.

Journal Article J Pediatr Hematol Oncol Nurs · 2022 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 a ... Full text Link to item Cite

Early onset severe ATP1A2 epileptic encephalopathy: Clinical characteristics and underlying mutations.

Journal Article Epilepsy Behav · March 2021 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 th ... Full text Open Access Link to item Cite

Characterization of Severe and Extreme Behavioral Problems in Patients With Alternating Hemiplegia of Childhood.

Journal Article Pediatr Neurol · October 2020 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 occurren ... Full text Link to item Cite

Social impairments in alternating hemiplegia of childhood.

Journal Article Dev Med Child Neurol · July 2020 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 f ... Full text Link to item Cite

Psychosocial Burden of Childhood Sickle Cell Disease on Caregivers in Kenya.

Journal Article J Pediatr Psychol · June 1, 2020 OBJECTIVES: 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 ... Full text Link to item Cite

Computerized cognitive training in pediatric sickle cell disease: A randomized controlled pilot study.

Journal Article Clinical Practice in Pediatric Psychology · January 1, 2020 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 ... Full text Cite

Cognitive Implications of Ototoxicity in Pediatric Patients With Embryonal Brain Tumors.

Journal Article J Clin Oncol · June 20, 2019 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 ... Full text Link to item Cite

Parenting a child with cancer: a couple-based approach.

Journal Article Transl Behav Med · May 16, 2019 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 fam ... Full text Link to item Cite

Cognitive, adaptive, and behavioral profiles and management of alternating hemiplegia of childhood.

Journal Article Dev Med Child Neurol · May 2019 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 entere ... Full text Link to item Cite

Further evidence for the involvement of EFL1 in a Shwachman-Diamond-like syndrome and expansion of the phenotypic features.

Journal Article Cold Spring Harb Mol Case Stud · October 2018 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 i ... Full text Link to item Cite

Mobile health intervention for youth with sickle cell disease: Impact on adherence, disease knowledge, and quality of life.

Journal Article Pediatr Blood Cancer · August 2018 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 ... Full text Link to item Cite

Posterior fossa syndrome and long-term neuropsychological outcomes among children treated for medulloblastoma on a multi-institutional, prospective study.

Journal Article Neuro Oncol · November 29, 2017 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 neuropsycho ... Full text Link to item Cite

[Formula: see text]Executive functioning and health-related quality of life in pediatric sickle cell disease.

Journal Article Child Neuropsychol · November 2017 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 ... Full text Link to item Cite

Plasma cytokines associated with febrile status epilepticus in children: A potential biomarker for acute hippocampal injury.

Journal Article Epilepsia · June 2017 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 childr ... Full text Link to item Cite

Social functioning in survivors of pediatric brain tumors: Contribution of neurocognitive and social-cognitive skills

Journal Article Children's Health Care · April 3, 2017 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 measure ... Full text Cite

Cognitive functioning one month and one year following febrile status epilepticus.

Journal Article Epilepsy Behav · November 2016 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 meas ... Full text Link to item Cite

De Novo Truncating Variants in ASXL2 Are Associated with a Unique and Recognizable Clinical Phenotype.

Journal Article Am J Hum Genet · October 6, 2016 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 ... Full text Link to item Cite

Benefit Finding in Maternal Caregivers of Pediatric Cancer Survivors: A Mixed Methods Approach.

Journal Article J Pediatr Oncol Nurs · September 2016 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 quantit ... Full text Link to item Cite

Risk factors for subsequent febrile seizures in the FEBSTAT study.

Journal Article Epilepsia · July 2016 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 subseq ... Full text Link to item Cite

Social functioning and facial expression recognition in children with neurofibromatosis type 1.

Journal Article J Intellect Disabil Res · March 2016 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 relationshi ... Full text Link to item Cite

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 Article Lancet · February 13, 2016 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 ... Full text Open Access Link to item Cite

Quinidine in the treatment of KCNT1-positive epilepsies.

Journal Article Ann Neurol · December 2015 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 ... Full text Link to item Cite

Fatigue in Children With Sickle Cell Disease: Association With Neurocognitive and Social-Emotional Functioning and Quality of Life.

Journal Article J Pediatr Hematol Oncol · November 2015 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 a ... Full text Link to item Cite

Social cognitive training in adolescents with chromosome 22q11.2 deletion syndrome: feasibility and preliminary effects of the intervention.

Journal Article J Intellect Disabil Res · October 2015 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 psychiatr ... Full text Link to item Cite

The potential utility of parent-reported attention screening in survivors of childhood cancer to identify those in need of comprehensive neuropsychological evaluation.

Journal Article Neurooncol Pract · March 2015 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 measure ... Full text Link to item Cite

Examination of risk factors for intellectual and academic outcomes following treatment for pediatric medulloblastoma.

Journal Article Neuro Oncol · August 2014 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 ... Full text Link to item Cite

Working memory abilities among children treated for medulloblastoma: parent report and child performance.

Journal Article J Pediatr Psychol · June 2014 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 as ... Full text Link to item Cite

Prognostic factors that increase the risk for reduced white matter volumes and deficits in attention and learning for survivors of childhood cancers.

Journal Article Pediatr Blood Cancer · June 2014 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, associa ... Full text Link to item Cite

The Impact of Cognitive Functioning on Quality of Life in Children with Sickle Cell Disease

Journal Article JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS · February 1, 2014 Link to item Cite

Predictors of Fatigue in Children with Sickle Cell Disease

Journal Article JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS · February 1, 2014 Link to item Cite

Reorganization and stability for motor and language areas using cortical stimulation: case example and review of the literature.

Journal Article Brain Sci · November 26, 2013 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 ... Full text Open Access Link to item Cite

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 Article Am J Hematol · November 2013 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) (Clinical ... Full text Link to item Cite

Processing speed, attention, and working memory after treatment for medulloblastoma: an international, prospective, and longitudinal study.

Journal Article J Clin Oncol · October 1, 2013 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 ... Full text Link to item Cite

Feasibility and preliminary efficacy data from a computerized cognitive intervention in children with chromosome 22q11.2 deletion syndrome.

Journal Article Res Dev Disabil · September 2013 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 co ... Full text Link to item Cite

Working memory training in survivors of pediatric cancer: a randomized pilot study.

Journal Article Psychooncology · August 2013 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- ... Full text Link to item Cite

Sluggish cognitive tempo in survivors of pediatric brain tumors.

Conference J Neurooncol · August 2013 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 tha ... Full text Link to item Cite

Fatigue in Children with Sickle Cell Disease: Impact on Quality of Life

Journal Article JOURNAL OF DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS · July 1, 2013 Link to item Cite

Parent-reported social outcomes after treatment for pediatric embryonal tumors: a prospective longitudinal study.

Journal Article J Clin Oncol · November 20, 2012 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 Behav ... Full text Link to item Cite

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 Article Am J Med Sci · October 2012 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 s ... Full text Link to item Cite

Induction chemotherapy and conformal radiation therapy for very young children with nonmetastatic medulloblastoma: Children's Oncology Group study P9934.

Journal Article J Clin Oncol · September 10, 2012 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 stu ... Full text Link to item Cite

Health-related quality of life in sickle cell disease: past, present, and future.

Journal Article Pediatr Blood Cancer · August 2012 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 di ... Full text Link to item Cite

How parents cope with their child's diagnosis and treatment of an embryonal tumor: results of a prospective and longitudinal study.

Journal Article J Neurooncol · November 2011 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 ... Full text Link to item Cite

Technical aspects and testing of a program to assess deficits in facial expression recognition in childhood cancer survivors

Journal Article Journal of Cyber Therapy and Rehabilitation · October 26, 2011 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 h ... Cite

Computerized cognitive training in survivors of childhood cancer: a pilot study.

Journal Article J Pediatr Oncol Nurs · 2011 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 ... Full text Link to item Cite

Neurocognitive outcome 12 months following cerebellar mutism syndrome in pediatric patients with medulloblastoma.

Journal Article Neuro Oncol · December 2010 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 wer ... Full text Link to item Cite

Long-term efficacy of methylphenidate in enhancing attention regulation, social skills, and academic abilities of childhood cancer survivors.

Journal Article J Clin Oncol · October 10, 2010 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 ... Full text Link to item Cite

Associations between leisure-time physical activity and health-related quality of life among adolescent and adult survivors of childhood cancers.

Journal Article Psychooncology · September 2010 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 ph ... Full text Link to item Cite

Predicting methylphenidate response in long-term survivors of childhood cancer: a randomized, double-blind, placebo-controlled, crossover trial.

Journal Article J Pediatr Psychol · March 2010 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 AL ... Full text Link to item Cite

Perceived social competency in children with brain tumors: comparison between children on and off therapy.

Journal Article J Pediatr Oncol Nurs · 2010 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. Thi ... Full text Link to item Cite

Gender differences in facial expression recognition in survivors of pediatric brain tumors.

Journal Article Psychooncology · August 2009 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 a ... Full text Link to item Cite

Adjustment of caregivers of pediatric patients with brain tumors: a cross-sectional analysis.

Journal Article Psychooncology · May 2009 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% ... Full text Link to item Cite

A pilot study of hydroxyurea to prevent chronic organ damage in young children with sickle cell anemia.

Journal Article Pediatr Blood Cancer · May 2009 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 o ... Full text Link to item Cite

Additional evidence of a nonverbal learning disability in survivors of pediatric brain tumors

Journal Article Children's Health Care · January 1, 2009 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 fro ... Full text Cite

Hydrocephalus as a possible additional contributor to cognitive outcome in survivors of pediatric medulloblastoma.

Journal Article Psychooncology · November 2008 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, acad ... Full text Link to item Cite

Further validation of the parent experience of child illness scale

Journal Article Children's Health Care · April 1, 2008 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 ca ... Full text Cite

Psychosocial functioning in parents of adult survivors of childhood cancer.

Journal Article J Pediatr Hematol Oncol · February 2008 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 maj ... Full text Link to item Cite

Social functioning and facial expression recognition in survivors of pediatric brain tumors.

Journal Article J Pediatr Psychol · 2008 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 child ... Full text Link to item Cite

Childhood cancer survivors' perceived barriers to improving exercise and dietary behaviors.

Journal Article Oncol Nurs Forum · January 2008 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 cent ... Full text Link to item Cite

Neuropsychological assessment, neuroimaging, and neuropsychiatric evaluation in pediatric and adult patients with sickle cell disease (SCD).

Journal Article Neuropsychiatr Dis Treat · December 2007 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 i ... Full text Link to item Cite

Efficacy of Hydroxyurea To Prevent Organ Damage in Young Children with Sickle Cell Anemia.

Conference Blood · November 16, 2007 AbstractHydroxyurea (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 ... Full text Cite

Acute neurocognitive response to methylphenidate among survivors of childhood cancer: a randomized, double-blind, cross-over trial.

Journal Article J Pediatr Psychol · October 2007 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 ... Full text Link to item Cite

Brief report: psychosocial functioning of fathers as primary caregivers of pediatric oncology patients.

Journal Article J Pediatr Psychol · August 2007 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 Sym ... Full text Link to item Cite

Fatigue in adolescent survivors of pediatric cancer

Conference NEURO-ONCOLOGY · October 1, 2006 Link to item Cite

Development and validation of the parent experience of child illness.

Journal Article J Pediatr Psychol · April 2006 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 par ... Full text Link to item Cite

Factor analysis and validity of the Conners Parent and Teacher Rating Scales in childhood cancer survivors.

Journal Article J Pediatr Psychol · March 2006 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 ... Full text Link to item Cite

Smaller white-matter volumes are associated with larger deficits in attention and learning among long-term survivors of acute lymphoblastic leukemia.

Journal Article Cancer · February 15, 2006 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. METH ... Full text Link to item Cite

Factor analysis and teacher rating scales in childhood cancer survivors

Journal Article Journal of Pediatric Psychology · 2006 Cite

Development and validation of the ParentExperience of Illness (PECI) Questionnaire

Journal Article Journal of Pediatric Psychology · 2006 Cite

Quality of life in pediatric brain tumor survivors

Conference NEURO-ONCOLOGY · July 1, 2005 Link to item Cite

Survivors of childhood cancer and their guardians.

Journal Article Cancer · May 15, 2005 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 ... Full text Link to item Cite

Response rates to a mailed survey targeting childhood cancer survivors: a comparison of conditional versus unconditional incentives.

Journal Article Cancer Epidemiol Biomarkers Prev · May 2005 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 can ... Full text Link to item Cite

Response rates to a mailed survey targeting childhood cancer survivors

Journal Article Cancer Epidemiology, Biomarkers and Prevention · 2005 Cite

Short-term efficacy of methylphenidate: a randomized, double-blind, placebo-controlled trial among survivors of childhood cancer.

Journal Article J Clin Oncol · December 1, 2004 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 psychostimulan ... Full text Link to item Cite

Short-term efficacy of methylphenidate: a randomized, double-blind, placebo-controlled trial among survivors of childhood cancer.

Journal Article Journal of clinical oncology : official journal of the American Society of Clinical Oncology · December 1, 2004 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 psychostimulan ... Cite

Neurocognitive development of young children with sickle cell disease through three years of age.

Journal Article J Pediatr Psychol · 2002 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 funct ... Full text Link to item Cite

The impact of sickle cell disease on cognitive functioning and learning

Journal Article School Psychology Review · December 1, 1999 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 ... Cite

Enhancing commitment improves adherence to a medical regimen.

Journal Article J Consult Clin Psychol · February 1994 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. ... Full text Link to item Cite

The Influence of Behavioural Family Intervention on the Health of Chronically Ill Children

Journal Article Behaviour Change · January 1, 1992 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 fa ... Full text Cite

Matching treatment with recurrent abdominal pain symptoms: An evaluation of dietary fiber and relaxation treatments

Journal Article Behavior Therapy · January 1, 1991 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 ... Full text Cite