THU0320 Development and testing of the readiness for adult care in rheumatology (RACER) questionnaire for adolescents with rheumatic conditions

Abstract

Background As teens with rheumatic conditions (RCs) approach adulthood, they are expected to take on more responsibility for their care. Poorly planned transition can result in treatment non-adherence and increased disease morbidity. Youths must be properly prepared for this transition and an accurate assessment of their readiness for transition and transfer to adult care is essential. Our group aims to develop a valid questionnaire to measure transition readiness in adolescents with RCs using a phased approach. Phase 1 (systematic literature review) revealed a lack of well-validated readiness measures. Phase 2 (two day consensus conference) resulted in expert agreement on readiness domains and items for inclusion in the final version of the questionnaire. Objectives To determine the face and content validity of the RACER questionnaire. Methods A qualitative design with iterative cycles was conducted with (a) experts in rheumatology, transition and adolescent medicine and (b) adolescents with RCs. Fifteen experts (independent of Phase 2) participated in face and content validity testing via an online survey. A purposive sample of 14 youths (12-18 years) was then recruited from a rheumatology clinic at a Canadian paediatric hospital to participate in semi-structured interviews in iterative cycles. All participants rated the importance of each RACER domain and item, assessed the understandability of items, and evaluated whether important domains or items were missing. Results Online expert face and content validity testing led to the deletion of one item (“Do you talk about your health condition with your teachers and/or your boss?”) due to redundancy. This item was replaced with, “Do you use healthy ways of managing your emotions?” The item “Do you make plans for medical care when you travel?” was modified to “Do you make plans for medical care when you leave home? (e.g. travel, school, job)”. Testing with the first 7 teens necessitated clarification of two items: “Do you know your rights with regards to privacy?” was modified to “Do you know your privacy rights regarding your health information?” and “Do you recognize the signs that you are getting sick?” was modified to “Do you recognize the signs that your rheumatic condition is getting worse (flare)?” Neither group suggested additional items or domains be added. No changes were suggested in the second testing cycle. Conclusions This study established the face and content validity of the RACER questionnaire. Next steps will determine the psychometric properties of RACER. Establishment of a valid transition readiness measure will identify areas for adolescent education and aid in evaluating transition program effectiveness for this population. This will help adolescents with RCs transition successfully into adult health care and improve health outcomes. Disclosure of Interest None Declared

The Coming-of-Age Transition Care for Adolescents with Rheumatic Disease—Where Are We and What Have We Done in Asia?

“…Examples include the Transition Readiness Assessment Questionnaire (TRAQ), TR(x)ANSITION Scale and AM I ON TRAC (Taking Responsibility for Adolescent/Adult Care) [ 48 , 49 , 50 ]. Apart from the Readiness for Adult Care in Rheumatology (RACER) questionnaire, most of these transition readiness measures are not specific to rheumatology [ 51 ]. Furthermore, high scores on many of these transition measures do not correlate with successful transition [ 43 ], indicating that these transition tools may not have holistically addressed the biopsychosocial aspects of transition but instead focus only on disease and health-related factors.…”

Adolescents’ and Young Adults’ Recommendations for Implementing Healthcare Transition in Rheumatology: A Mixed Methods Study

“…In addition to transferring into the care of an adult-focused rheumatologist, AYAs are learning to independently manage their chronic condition in new social settings as they move from their natal homes and pursue adult-oriented goals, such as careers. To support AYAs, researchers worldwide have examined gaps in rheumatol-ogy services (5)(6)(7), used new and existing assessments to assess transition readiness (8)(9)(10)(11), and proposed programmatic models for their health care settings (12)(13)(14)(15). Although promising transition programs have shown potential to improve health care use and processes (e.g., documentation, provision of policies) (12,14,15), more research is needed to understand how to widely implement these programs and how they impact outcomes that matter most to patients, such as disease stability, confidence in communicating with health care providers, and access to community services that support psychosocial well-being and vocational development (4,16,17).…”