Children with Special Health Care Needs
Autism Treatment Network
The Autism Treatment Network (ATN) is a network of treatment and research centers dedicated to improving medical care for children and adolescents with autism. The Autism Treatment Network was modeled after the Cystic Fibrosis Network, which includes a large network of clinical care centers offering comprehensive diagnosis, treatment, care and counseling and a network of research centers that engage in projects to advance understanding of the disease, develop new treatments and find a cure.
The goal of the ATN is to improve medical treatment of children and adolescents with autism by establishing standards of clinical care based on research and shared clinical practice. The ATN is dedicated to establishing these standards of care for autism in the medical community through open research collaboration, trainee mentorship, medical education and participation in conferences. The ATN is further committed to improving insurance reimbursement for autism treatment to improve accessibility to these treatments community-wide.
Measuring Quality-Adjusted Life Years (QALYs) for Economic Evaluations of Treatment Services for Children with Autism Spectrum Disorders
This project, conducted in collaboration with the University of Arkansas, seeks to understand how to measure QALYs in children with Autism Spectrum Disorders. It further seeks to determine how best to capture health effects of caregivers (parents) and to determine how to incorporate caregiver effects into cost-effectiveness analyses.
Transition to Adult Health Care for Youth with Autism Spectrum Disorders
This project assesses the needs for transition services among youth with Autism Spectrum Disorders (ASD) and aims to design an intervention to help youth transition to the adult health care system. Descriptive data and anecdotal reports indicate that few adolescents with special health care needs receive transition services to help them bridge the chasm that exists between the expectations and realities of the pediatric and adult health care systems. This is especially true for youth with ASD. We seek to understand barriers to transition for youth with ASD and to uncover current best practices. We will use this information to design and test the feasibility of intervention strategies for improving the health care transition.
Child Health After Assisted Reproductive Technology: A Population-Based Study
Infertility affects an estimated 12 to 15 percent of women of reproductive age. The use of fertility enhancing therapies, including Assisted Reproductive Technologies (ART), has risen steadily in the United States, with an estimated 1 to 3 percent of births involving ART. Numerous studies have reported significantly higher risks of adverse perinatal outcomes in assisted-versus spontaneous-conception pregnancies. Infertility and subfertility diagnoses, independent of ART, can also result in higher rates of adverse pregnancy outcomes. Beyond underlying subfertility, documenting the added effect of ART on child health outcomes remains a challenge. This research project creates a unique longitudinal, population-based, source of data that combines detailed clinical information on ART treatment and infertility diagnoses for the resultant live births and fetal deaths from 2004 through 2011, with the Massachusetts Pregnancy to Early Life Longitudinal (PELL) Data System. PELL contains longitudinal data on pregnancy, births, deaths, hospital utilization, birth defects and public program participation including Early Intervention. The resulting database will track reproductive and child health outcomes to 3 years of age among three groups: babies conceived through ART (~18,000), and those not conceived through ART to subfertile women (~5,000) and those conceived to fertile women (~354,000).
Two broad hypotheses will be tested:
(1) Children born from ART treatments are at significantly higher risk of compromised fetal, perinatal, infant and early childhood health outcomes compared to the two comparison groups, and
(2) Risk of adverse infant and child health outcomes will vary by ART treatment parameters, infertility diagnoses and their interaction.
Disparities in Downs Syndrome Survival and Development in Massachusetts
The survival of children with Down syndrome (DS), one of the most common birth defects, has improved markedly over the past few decades. However, substantial racial/ethnic disparities in survival have been identified. Children with DS often have co-occurring birth defects and other health and developmental co-morbidities that affect the quality of their lives and influence public health programming. The proposed research builds upon and extends the ongoing PELL Down Syndrome Project (PDSP), which uses the Massachusetts (MA) population-based Pregnancy to Early Life Longitudinal (PELL) data system to examine prevalence of and disparities in infant morbidity and mortality, hospital service utilization and associated costs, among children with DS in MA from 2001-2005 overall and among four DS sub-groups: DS only, DS + congenital heart defects (CHD), DS + CHD + other major non-cardiac birth defects (OMBD), and DS+OMBD. Using the PELL system’s unique longitudinal linkages among multiple health and human service data sets, this research project will generate novel individual, contextual and programmatic/health service level data to examine disparities in co-morbidities and survival among children with DS.