Improving Healthcare Transition of Young Adults with Chronic Diseases at The Ottawa Hospital: a cross-sectional study assessing the patient’s perspective on current practices

Abstract Background: Transfer of young adults (YAs) with chronic diseases from pediatric- to adult hospital-based care is a major life event for this vulnerable group of patients. Inadequate preparation of the YAs and poorly planned transition of care are associated with subsequent treatment non-adherence, discontinuity of care and poor long-term outcomes. A formalized structured process for HCT has been demonstrated to improve patient experience and optimize subsequent engagement with adult healthcare and is now recommended as standard of care. Implementation of this approach is however suboptimal at a global level and practices vary within institutes and between specialties. We recognized this issue at the Ottawa Hospital (TOH) and sought to explore the impact of differences in approaches to HCT from the YA’s perspective. We assessed and compared patient experience of HCT in specialties with and without a structured HCT program with the aim of gaining insight into gaps in care to facilitate reforming current practices and optimizing care. Methods: YAs aged 18 to 25 years (n=175) who had transitioned into five adult specialties at TOH volunteered for this study. A self-care assessment survey and two feedback surveys were customized from the Got TransitionTM HCT measurement resources. Responses of those YAs attending clinics with (n=93) and without (n=82) a structured HCT program were assessed and compared.Results: YAs who transitioned into clinics with structured HCT reported better medical knowledge and practical skills for independent use of the healthcare system compared to YAs who attended clinics without a formal HCT process. This group reported a greater level of involvement in preparation for HCT by their pediatric health-care providers and better education and provision of practical information by their adult healthcare team compared to the YAs attending clinics without a formal HCT process. Conclusions: Results demonstrate superior health knowledge and healthcare usage skills in YAs attending clinics with structured HCT programs and support the benefit of establishing a structured approach to HCT across all specialties caring for transitioned YAs at TOH. By identifying strengths and gaps in current practices, this study has provided a basis to drive institutional reform to improve quality of care for this vulnerable patient population.