Background: Improved outcomes in pediatric to adult-oriented HCT especially for children with special health care needs (SHCN) are a national objective of Healthy People 2020, with only 40% of adolescents with SHCN currently meeting the national core outcomes in pediatric to adult-oriented HCT. Despite the potential of hospitalized AYA being higher utilizers of the health care system, there is little evaluation of this population regarding knowledge and preparation for such transitions. The purpose of this study was to describe the baseline experience and knowledge of hospitalized AYA regarding key elements of HCT.

Methods: From 11/2013-10/2015, we enrolled patients aged 15-25 years admitted to a children’s hospital. Those with acute psychosis, intellectual disability, non–English speaking or in the ICU were excluded. All patients completed a survey. Questions included demographics and questions adapted from the 2007 Survey of Adult Transition and Health from DHHS and core HCT outcome measures from the 2009 National Survey of SHCN.  We modified questions from the Self-Determination Theory Health-Care Treatment Self-Regulation Questionnaire (TSRQ) and Perceived Competence Scale (PCS) to apply to HCT.

Results: Of 148 patients enrolled, 135 completed the survey.  Mean age was 17 years, 61% were female, 76% white, 15% black and 8% hispanic. 37% had public insurance and average level of education completed was 10th grade. SHCN patients composed 85% of the total sample and only 11% of those reported receiving education on all 4 national core HCT outcome measures. Mental health disorders were the most common SHCN (34%) followed by respiratory and gastrointestinal disorders (each 25%). Linear regression revealed females had increased perception of knowledge, positive attitudes and autonomous motivation scores (AMS) (p=0.04, 0.02, 0.05) compared to males. 48% of all subjects had a medical summary, but 58% reported being interested in creating or updating one. Those with medical summaries had higher AMS and perceived competence scores (PCS) on the TSRQ and PCS scale (p=0.006, 0.001). Older patients were more likely to have a medical summary and had higher baseline transition planning experience (p<0.02, 0.0001). Only 36% of patients reported having been talked to about seeing an adult health provider in the future, but 60% were interested in learning more about adult health providers.  Higher AMS and PCS were correlated with higher positive attitudes towards transition planning (p=0.0003, 0.037). Higher controlled motivation scores (CMS), AMS and PCS were correlated with higher perception of knowledge scores (p=0.02, 0.0007, 0.0001).

Conclusions: The hospitalized AYA had received limited education and preparedness regarding key elements of HCT to adult-oriented health care, but had interest in learning more about the process. AYA patients with higher AMS and PCS had increased perception of knowledge and positive attitudes towards HCT planning.