James M. Perrin, MD, is professor of pediatrics at Harvard Medical School and former director of the Division of General Pediatrics at the MassGeneral Hospital for Children and associate chair of pediatrics for research at MGH. He holds the John C. Robinson Chair in Pediatrics and founded the MGH Center for Child and Adolescent Health Policy, a multidisciplinary research and training center with an active fellowship program in general pediatrics, and directed the center for over 15 years. He is president of the American Academy of Pediatrics, former chair of its Committee on Children with Disabilities, and past president of the Ambulatory (Academic) Pediatric Association. For the American Academy of Pediatrics, he also co-chaired a committee to develop practice guidelines for attention deficit hyperactivity disorder and then a group advising the AAP on the implementation of the guidelines. His research has examined asthma, middle ear disease, children’s hospitalization, health insurance, and childhood chronic illness and disabilities, with recent emphases on epidemiology of childhood chronic illness and organization of services for the care of children and adolescents with chronic health conditions. He headed the Clinical Coordinating Center (based at the MGH) for the national Autism Speaks Autism Treatment Network and directs the Autism Intervention Research Network on Physical Health, a multisite collaborative aiming to improve evidence-based care for children and adolescents with autism spectrum disorders. He also directed the Evidence Working Group reporting to the Maternal and Child Health Bureau for the Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. Dr. Perrin was the founding editor of Academic Pediatrics (formerly known as Ambulatory Pediatrics), the journal of the Academic Pediatric Association.
Dr. Perrin has served on Institute of Medicine Committees on Maternal and Child Health under Health Care Reform, Quality of Long-Term-Care Services in Home and Community-Based Settings, Enhancing Federal Healthcare Quality Programs, and Disability in America; the National Commission on Childhood Disability; and the Disability Policy Panel of the National Academy of Social Insurance. His experience includes two years in Washington working on rural primary care development and migrant health. After his fellowship at the University of Rochester, he developed and ran a rural community health center in farming communities between Rochester and Buffalo.
He received a Robert Wood Johnson Foundation Investigator Award in Health Policy Research. He also served as a member of the National Advisory Council for the Agency for Healthcare Research and Quality. A graduate of Harvard College and Case Western Reserve University School of Medicine, he had his residency and fellowship training at the University of Rochester and has also been on the faculties of the University of Rochester and Vanderbilt University.
Establishing an Evidence Base for Systems of Care for Children and Youth with Special Healthcare Needs
The Maternal and Child Health Bureau (MCHB) identified six key components of systems of care for children and youth with special health care needs (CYSHCN) and their families: partnership and satisfaction; care in the medical home; early and continuous screening; adequate insurance; organizing community services to be accessible; and transition to adult life. MCHB entered into a cooperative agreement with the MGH Center for Child & Adolescent Health Research and Policy to develop and disseminate a comprehensive review of the evidence base for these components of systems of care.
Initial work focused on developing an appropriate theoretical framework to serve as the basis for the comprehensive review and compilation of evidence supporting comprehensive, community-based, family-oriented care for CYSHCN. Using this framework, the team at the MassGeneral Hospital for Children, along with collaborators from University of California, San Francisco, and the National Initiative for Children’s Healthcare Quality, sought to assemble, interpret, integrate, and disseminate valid and applicable evidence regarding core components for the systems of care. The following information summarizes the findings from systematically reviewed medical literature in each area.
The overarching framework was published in Archives of Pediatrics and Adolescent Medicine but is not included in downloadable versions from this site:
A Family-Centered, Community-Based System of Services for Children and Youth with Special Health Care Needs
James M. Perrin, MD; Diane Romm, PhD; Sheila R. Bloom, MS; Charles J. Homer, MD, MPH; Karen A. Kuhlthau, PhD; Carl Cooley, MD; Paula Duncan, MD; Richard Roberts, PhD; Phyllis Sloyer, PhD; Nora Wells, MA; Paul W. Newacheck, DrPH
Archives of Pediatrics & Adolescent Medicine. 2007;161(10):933-936. doi:10.1001/archpedi.161.10.933.
This article defines a system of services for CYSHCN as a family-centered network of community based services designed to promote the healthy development and well-being of children and their families. Critical characteristics of a system include coordination of child and family services, effective communication among providers and the family, family partnership in care provision, and flexibility. This definition provides a conceptual model that can help measurement development and assessment of how well systems work and achieve their goals.
The Agreement led to the publication of the following reviews:
A Review of the Evidence for the Medical Home for Children with Special Health Care Needs
Charles J. Homer, MD, MPH; Kirsten Klatka, MSW; Diane Romm, PhD; Karen A. Kuhlthau, PhD; Sheila R. Bloom, MS; Paul W. Newacheck, DrPH; Jeanne Van Cleave, MD; James M. Perrin, MD
Pediatrics. 2008 Oct;122(4):e922-37. doi: 10.1542/peds.2007-3762.
Overall, the evidence provides moderate support for the hypothesis that medical homes provide improved health-related outcomes for CYSHCN. Medical homes provide care that is more clinically effective, timelier, and more family centered than other sources of care. Too few studies examined cost, safety, or equity to draw meaningful conclusions. Most studies did not examine the comprehensive medical home model, but rather one or two elements of the medical home such as care planning or continuity. Studies used inconsistent definitions of the medical home and different outcome measures, making the evidence more difficult to interpret; and none of the evidence examined the medical home in its entirety.
The Future of Health Insurance for Children with Special Health Care Needs
Paul W. Newacheck, DrPH; Amy J. Houtrow, MD, MPH; Diane L. Romm, PhD; Karen A. Kuhlthau, PhD; Sheila R. Bloom, MS; Jeanne Van Cleave, MD; James M. Perrin, MD
Pediatrics. 2009 May;123(5):e940-7. doi: 10.1542/peds.2008-2921.
Recent expansions in public coverage, although offset in part by a contraction in employer-based coverage, have led to modest but significant reductions in the number of uninsured CYSHCN. Although a high proportion of CYSHCN have insurance at any point in time, nearly 40% are either uninsured at least part of the year or have coverage that is inadequate. Children with inadequate coverage had greater difficulty using community-based services, more frequent delays in obtaining care, and a greater frequency of unmet needs. CYSHCN with adequate insurance and continuous coverage were more likely to meet MCHB performance measures, compared to those with inadequate and discontinuous coverage.
Health Care Transition for Youth with Special Health Care Needs
Sheila R. Bloom, MS; Karen A. Kuhlthau, PhD; Jeanne Van Cleave, MD; Alixandra A. Knapp, MS; Paul W. Newacheck, DrPH; James M. Perrin, MD
Journal of Adolescent Health. 2012 Sep;51(3):213-9. doi: 10.1016/j.jadohealth.2012.01.007.
Although many YSHCN appear to make the transition to adult health providers successfully, some experience serious gaps in outcomes; those with more complex conditions or with conditions affecting the nervous system appear to have less good transitions and experience less educational and employment success. Youth with cognitive or mental health impairments in particular have poorer transition experiences. Some evidence supports introducing YSHCN to adult providers before leaving the pediatric system; however, few programs demonstrate evidence of success in improving youth’s transition outcomes.
Evidence for Family-Centered Care for Children with Special Health Care Needs: A Systematic Review
Karen A. Kuhlthau, PhD; Sheila R. Bloom, MS; Jeanne Van Cleave, MD; Alixandra A. Knapp, MS; Diane Romm, PhD; Kirsten Klatka, MSW; Charles J. Homer, MD, MPH; Paul W. Newacheck, DrPH; James M. Perrin, MD
Academic Pediatrics. 2011 Mar-Apr;11(2):136-43. doi: 10.1016/j.acap.2010.12.014.
Family-centered care (FCC) has received widespread endorsement for use in care in the United States. This systematic review of FCC focused specifically on family-provider partnership as the activity that constitutes FCC. Evidence indicated FCC for CYSHCN is associated with improved health and well-being, improved satisfaction, greater efficiency, improved access, better communication, better transition services, and other positive outcomes; and suggests that FCC is associated with improved outcomes for CYSHCN.
Interventions to Improve Screening and Follow-Up in Primary Care: A Systematic Review of the Evidence
Jeanne Van Cleave, MD; Karen A. Kuhlthau, PhD; Sheila R. Bloom, MS; Paul W. Newacheck, DrPH; Alixandra A. Nozzolillo, MS; Charles J. Homer, MD, MPH; James M. Perrin, MD
Academic Pediatrics. 2012 Jul-Aug;12(4):269-82. doi: 10.1016/j.acap.2012.02.004.
The American Academy of Pediatrics and other organizations recommend screening all children for special health care needs as part of preventive care. However, the proportion of children who are appropriately screened and who receive follow-up care is low. Evidence suggests that several feasible, practice- and provider-level interventions increase the quality of screening in pediatric primary care. Evidence for interventions to improve follow-up of screening tests is scant, and few articles described interventions to track screening results or referral completion for those with abnormal tests.
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