Transitioning Children with Special Health Care Needs

Purpose: Children born with diseases and disabilities are living longer but continue to face a spectrum of mental and physical differences as they age. They are considered to be children with special health care needs (CSHCN) and can acquire the needed care due to higher prevalence of specially trained pediatric health professionals, but there is a lack of care and services once they transition into adults. This study aims to gather information about barriers to CSHCN transition in the North Texas area that health professionals, community leaders, and families face in order to provide evidence of health issues that needs to be addressed. Methods: Two surveys were designed and distributed to four groups. The first survey was targeted at health care and allied health professionals while the second survey was targeted at families of CSHCN and community leaders. To create the survey, we gathered information from interviewing members of the Transition Medicine Coalition at the University of North Texas Health Science Center, reviewing literature, and engaging in a clinical preceptorship. Surveys were delivered through electronic means and will be open until a suitable power has been achieved. Results: 60.0% of health providers report discussing transition, but only 9.5% of families/leaders report that their provider discussed it. 48% of health providers strongly disagreed that they had the capacity to provide primary care for adults with SHCN. Lack of referral options to providers knowledgeable about SHCN (42.9%) and education about what services are available for patients with SHCN (42.9%) were barriers that health providers often faced. Families/leaders reported inability to schedule timely appointments and insurance not covering services as the top two barriers. Both surveys reported behavioral therapy was the most difficult service to refer to or find. Conclusions: There is a disparity in perceptions of health professionals discussing transition and family’s reception of the counseling. Almost half of health professionals strongly felt they did not have the capacity to provide primary care for adults with SHCN. It appears that health professionals do not have many referral options for adults with SHCN. The most significant barrier for families is the inability to schedule timely appointments. This study shows that barriers to transition exist and that adult SHCN providers and services are important to address.