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Healthcare Coordination and Transition for Individuals with Genetic Conditions


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).

Study Team/Roles

  • Gaurav Dave, MD, DrPH, MPH, PI
  • Singh, PI

Funding Organization

  • Health Resources and Services Administration (Southeast Regional Genetics Network)
  • 07/01/2017- 06/30/2020


Last updated: 7/28/2020