Jennifer Delahaye

Health-Related Quality of Life in Children with Autism Spectrum Disorders: Results from the Autism Treatment Network

We examined data collected as a part of the Autism Treatment Network, a group of 15 autism centers across the United States and Canada. Mean Health-Related Quality of Life (HRQoL) scores of the 286 children assessed were significantly lower than those of healthy populations (according to published norms). When compared to normative data from children with chronic conditions, children with ASD demonstrated worse HRQoL for total, psychosocial, emotional and social functioning, but did not demonstrate differing scores for physical and school functioning. HRQoL was not consistently related to ASD diagnosis or intellectual ability. However, it was consistently related to internalizing and externalizing problems as well as repetitive behaviors, social responsiveness, and adaptive behaviors. Associations among HRQoL and behavioral characteristics suggest that treatments aimed at improvements in these behaviors may improve HRQoL.

Prospective Study of Health-Related Quality of Life for Children With Brain Tumors Treated With Proton Radiotherapy

PURPOSE We describe the health-related quality of life (HRQoL) of a cohort of children with brain tumors treated with proton radiotherapy. PATIENTS AND METHODS We recruited 142 pediatric patients with brain tumors (age 2 to 18 years) and parents of such patients treated with proton radiation at Massachusetts General Hospital from 2004 to 2010. HRQoL was assessed using the PedsQL core, brain tumor, and cancer modules (range, 0 to 100). Assessments took place during radiation and annually thereafter. We examined correlations of HRQoL with disease, treatment, and cognitive and behavioral data. RESULTS Overall reports of HRQoL during treatment were 74.8 and 78.1 for child self-report (CSR) and 67.0 and 74.8 for parent proxy report (PPR) for the core and brain tumor modules, respectively. PPR demonstrated lower HRQoL scores than CSR, but the two were highly correlated. Higher HRQoL scores were significantly associated with Wechsler Full Scale Intelligence Quotient scores (administered via the age-appropriate version) and better scores on two behavioral measures. Disease type also correlated with PPR core total HRQoL score at the beginning of treatment: medulloblastoma or primitive neuroectodermal tumors, 57.8; germ cell tumors, 63.5; ependymoma or high-grade glioma, 69.8; low-grade glioma, 71.5; and other low-grade neoplasms, 78.0 (P = .001). Craniospinal irradiation and chemotherapy were negatively correlated with HRQoL. CONCLUSION This is the first study to our knowledge of HRQoL in a cohort of children with brain tumors treated with proton radiation. This prospective study demonstrates the effect of disease type and intensity of treatment on HRQoL. It further suggests that where CSR is not possible, PPR is appropriate in most circumstances.

Quality of life outcomes in proton and photon treated pediatric brain tumor survivors.

BACKGROUND Radiotherapy can impair Health Related Quality of Life (HRQoL) in survivors of childhood brain tumors, but proton radiotherapy (PRT) may mitigate this effect. This study compares HRQoL in PRT and photon (XRT) pediatric brain tumor survivors. METHODS HRQoL data were prospectively collected on PRT-treated patients aged 2-18 treated at Massachusetts General Hospital (MGH). Cross-sectional PedsQL data from XRT treated Lucile Packard Childrens Hospital (LPCH) patients provided the comparison data. RESULTS Parent proxy HRQoL scores were reported at 3 years for the PRT cohort (PRT-C) and 2.9 years (median) for the XRT cohort (XRT-C). The total core HRQoL score for the PRT-C, XRT-C, and normative population differed from one another and was 75.9, 65.4 and 80.9 respectively (p=0.002; p=0.024; p<0.001). The PRT-C scored 10.3 and 10.5 points higher than the XRT-C in the physical (PhSD) and psychosocial (PsSD) summary domains of the total core score (TCS, p=0.015; p=0.001). The PRT-C showed no difference in PhSD compared with the normative population, but scored 6.1 points less in the PsSD (p=0.003). Compared to healthy controls, the XRT-C scored lower in all domains (p<0.001). CONCLUSIONS The HRQoL of pediatric brain tumor survivors treated with PRT compare favorably to those treated with XRT and similar to healthy controls in the PhSD.

Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions

Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement.

Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD)

We conducted in-depth case studies of 10 health care professionals who actively provide primary medical care to adults with autism spectrum disorders. The study sought to understand their experiences in providing this care, the training they had received, the training they lack and their suggestions for encouraging more physicians to provide this care. Qualitative data were gathered by phone using a structured interview guide and analyzed using the framework approach. Challenges to providing care were identified at the systems, practice and provider, and education and training levels. Solutions and interventions targeting needed changes at each level were also proposed. The findings have implications for health care reform, medical school and residency training programs, and the development of best practices.

Psychological aspects of chronic health conditions.

1. James M. Perrin, MD* 2. Sangeeth Gnanasekaran, MD, MPH† 3. Jennifer Delahaye, MA† 1. *MGH Center for Child and Adolescent Health Policy, Boston, MA. 2. †Massachusetts General Hospital, Boston, MA. The recent report of the American Academy of Pediatrics Task Force on Mental Health provides guidance and tools to aid screening and identification of psychological issues in primary care practice. After completing this article, readers should be able to: 1. Understand psychosocial stressors that affect families who have a child with a chronic condition. 2. Describe the impact of the chronic condition on the family. 3. Understand how a childs developmental stage affects the psychological response to a chronic condition. 4. Address barriers to adherence among children with chronic conditions, especially among adolescents. 5. Describe the role of pediatricians in identification, measurement, and treatment of psychological issues in children with chronic conditions. Chronic illness generally refers to physical, emotional, or developmental conditions that affect the child for a prolonged period of time. Many types of conditions can be considered chronic, including those that lead to a need for prescription medications; additional medical services; physical, occupational, or speech therapy; or treatment for an emotional, developmental, or behavioral problem. Among children, the most prevalent chronic conditions are asthma, obesity, and mental health conditions, including attention-deficit/hyperactivity disorder (ADHD). The category includes many less common conditions, such as leukemia, sickle cell disease, arthritis, and spina bifida, as well as very rare conditions, such as lysosomal storage diseases. This review focuses on the psychosocial stressors and psychological issues associated with any childhood chronic condition for children and adolescents, and their families. Estimates of the prevalence of childhood chronic illness vary considerably owing to differences in the way that the term has been defined and measured. Most reported rates fall between 12% and 30%. The 2007 National Survey of …

Health Care Transition Services for Youth With Autism Spectrum Disorders: Perspectives of Caregivers

BACKGROUND AND OBJECTIVE: This paper seeks to describe the experience of youth with autism spectrum disorder (ASD) in making the health care transition (HCT) to adult care. METHODS: We surveyed 183 parents and guardians of youth with ASD, assessing the extent to which youth and families experienced and desired HCT services, their satisfaction with services, and obstacles to transition. Descriptive statistics were used to examine HCT measures and Fisher’s exact and t tests assessed whether demographic or health measures were associated with service receipt. Any measures with a P value <.05 were included in a logistic regression model, with service receipt as the dependent variable. RESULTS: The receipt of transition services was low overall, with rates for individual services ranging from 3% to 33% and only 60% of the sample receiving any transition service. Despite these low rates, a majority of respondents reported wanting services (73.3%–91.6%), and satisfaction for received services was high (89%–100%). Regression analyses showed depression to be the only variable significantly associated with service receipt. Youth who were identified by their caregivers as having depression experienced a higher rate of transition service receipt than those not identified as having depression. CONCLUSIONS: Findings suggest that there is a great need to address the provision of HCT services for youth with ASD. Although families who received HCT services were generally satisfied, overall rates of service receipt were quite low, and those who were not provided with services generally desired them.

The Family Impacts of Proton Radiation Therapy for Children With Brain Tumors

Children with brain tumors experience significant alterations to their health and well-being due to the tumors themselves and oncologic treatment. Caring for children with brain tumors can have significant impacts on families, especially during and shortly after treatment. In this study of the impacts on families caring for children undergoing proton radiation therapy for brain tumors, the authors found that families experienced a broad array of negative impacts. Families reported feeling like they were living on a roller coaster, feeling that others treated them differently, and having to give up things as a family. In the multivariable linear regression model, older age of the child and higher reported child health–related quality of life were associated with less family impact. The presence of concurrent chemotherapy was associated with increased family impact. This is the first study to specifically evaluate the families of children being treated with proton radiation therapy. The findings in this study are consistent with the findings in other studies of children treated with standard therapy that show that families experience a variety of stressors and negative impacts while their children are receiving treatment. Health care providers should be aware of the potential impacts on families of children with brain tumors and their treatment to provide robust services to meet the health, psychological, and social needs of such children and their families.

Health-Related Quality of Life of Adolescent and Young Adult Survivors of Central Nervous System Tumors Identifying Domains From a Survivor Perspective

This article uses qualitative methods to describe the domains of health-related quality of life (HRQoL) that adolescent and young adult (AYA) survivors of central nervous system (CNS) tumors identify as important. Survivors clearly attributed aspects of their current HRQoL to their disease or its treatment. We identified 7 key domains of AYA CNS tumor survivorship: physical health, social well-being, mental health, cognitive functioning, health behaviors, sexual and reproductive health, and support systems. Although most aspects of HRQoL that survivors discussed represented new challenges, there were several areas where survivors pointed out positive outcomes. There is a need for a HRQoL tool designed for this population of survivors, given their unique treatment and survivorship experience. Aspects of HRQoL related to cognition, sexual and reproductive health, health behaviors, and support systems are not typically included in generic HRQoL tools but should be assessed for this population. Developing HRQoL measurement instruments that capture the most significant aspects of HRQoL will improve the ability to track HRQoL in AYA CNS tumor survivors and in the long-term management of common sequelae from CNS tumors and their treatments.