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Healthcare Coordination and Transition for Individuals with Genetic Conditions Sharon Romelczyk • Sharon Homan • Joseph Telfair • Gaurav Dave • Alisha Keehn • Deborah Maiese • NCC Evaluation Workgroup

Ó Springer Science+Business Media New York 2015

Abstract This study aimed to examine insurance coverage, use of the healthcare system, satisfaction with care, transition from pediatric to adult healthcare services, and social and emotional support for individuals with genetic conditions. In June 2013, the National Genetics Education and Consumer Network surveyed US individuals with genetic conditions about their healthcare experiences. Chi square statistics were used to compare use of the healthcare system, satisfaction, social and emotional support of children (0–17 years) and adults (18 ? years) with genetic conditions. There were 1895 valid responses (53.0 % individuals with genetic conditions, 47.0 % parents of these individuals). The findings suggest several potential areas to

impact the quality of care received by this population. The majority of respondents reported that they had: (1) more than one health professional they considered to be their personal doctor or nurse (70.5 % children; 57.8 % adults); (2) providers that listened carefully to their needs always or most of the time (82.2 % children; 83.5 % adults); and (3) providers that usually or always involved them as partners in their care (78.4 % children; 66.6 % adults). However, several significant differences around care and support received between children versus adults and areas of need were reported. Most persons surveyed received care from a system of providers that was self- or parent- coordinated and lacked sufficient social and emotional support. Data from this study will inform practice and identifies further research needed to

S. Romelczyk (&) Genetic Alliance, The National Genetics Education and Consumer Network, 4301 Connecticut Ave. NW Suite 404, Washington, DC 20008, USA e-mail: [email protected]

G. Dave Division of General Medicine and Epidemiology, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

S. Homan Department of Biostatistics and Epidemiology, UNTHSC School of Public Health, Austin, TX, USA e-mail: [email protected] S. Homan Mountain States Genetics Regional Collaborative, Austin, TX, USA J. Telfair Department of Community Health, Jiann-Ping Hsu College of Public Health at Georgia Southern University, Statesboro, GA, USA e-mail: [email protected]

A. Keehn
D. Maiese American College of Medical Genetics and Genomics, The National Coordinating Center for the Regional Genetic Services Collaboratives, Bethesda, MD, USA e-mail: [email protected] D. Maiese e-mail: [email protected] D. Maiese Evaluation Workgroup of the National Coordination Center for the Regional Genetic Services Collaboratives, Bethesda, MD, USA

J. Telfair
G. Dave Southeast Regional Newborn Screening and Genetics Collaborative, Decatur, GA, USA e-mail: [email protected]

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