The Trust Study – Transition Us Together: Evaluating the Impact of A Parent- And Adolescent-Centered Transition Toolkit On Transition Readiness In Patients With Juvenile Idiopathic Arthritis And Childhood-Onset Systemic Lupus Erythematosus

Abstract

Aging adolescents with rheumatic disease adopt responsibility for disease management from parents. Education on transition care is usually provided to patients by healthcare providers or parents. However, parent-focused transition resources are sparse with limited understanding of parental role and involvement during transition. After providing both parent and adolescent with the Transition Toolkit (parent-centered transition pamphlet, 5 domains of transition readiness roadmap, tip sheets) to support transition to adult care, we aimed to i) determine the change in patient’s transition readiness, using the Transition-Q, ii) explore the influence of parent-adolescent relationships on transition readiness, using the Parent-Adolescent Communication Scale (PACS), and iii) obtain feedback on the Toolkit’s effectiveness, using a questionnaire. A prospective cohort study of patients 14-18 years was conducted at McMaster Children’s Hospital rheumatology transition clinic (includes pediatric rheumatologists, allied health, and the adult rheumatologist patients see post-transfer). Participant demographics, disease characteristics, transition readiness scores (Transition-Q, max 100), and parent-adolescent communication scores (PACS, max 100) were collected. After obtaining 2 Transition-Q scores from routine clinical care prior to enrollment, the Toolkit was shared with participants, and 2 follow-up Transition-Q scores were collected. Generalized estimating equation analyses were performed to determine the Toolkit’s impact on transition readiness and explore the parent-adolescent relationship and communication quality. Subgroup analyses were conducted by sex. A questionnaire was used to obtain Toolkit feedback. Of 21 patients, 19 completed one post-intervention Transition-Q and 16 completed two. Transition-Q scores increased over time and the rate of increase doubled after the Toolkit was shared with adolescents and parents (β=7.8, P<0.0 and β=15.5, P<0.0, respectively). Transition readiness did not seem to be influenced by the quality of communication between parent and child. Feedback from questionnaire responses found the Toolkit to be a helpful resource but standardization of transition programs and further investigation into parent-adolescent relationships, gender differences, and intervention sustainability is needed.