Background/Purpose: Implementation of structured healthcare transition processes remains elusive for most US rheumatology clinics (Johnson et al., 2021). Although research studies have proposed models and best practices for decades, barriers to successful healthcare transition persist, such as systemic procedures and rheumatologists’ lack of time and resources (Chira et al., 2014; Zisman et al., 2019). In this study, we identified adolescent and young adult (AYA) patients’ recommendations about how to deliver healthcare transition and examined their openness to various methods of implementation.

Methods: Participants aged 16-28 years old with a self-reported diagnosis of a rheumatic condition were recruited from patient organizations and social media. This mixed methods study used a two-phase exploratory sequential design. In phase one, experienced researchers led 90-minute focus groups to elicit AYAs’ reactions to principles and resources of the Six Core Elements of Healthcare Transition^TM (Sabbagh et al., 2018). Audio transcripts were analyzed using rapid analysis to develop a quantitative survey and later using in-depth content analysis. In phase two, an online quantitative survey was distributed to understand AYAs’ willingness to engage in various healthcare transition modalities. Descriptive statistics were performed using SAS v9.4

Results: In phase one, 39 AYAs (20.8 ± 2.9 years old; 82.1% female; 92.3% White; 48.7% using pediatric rheumatology services; 84.6% arthritis) participated in 7 focus groups. Participants discussed the need for a systematic educational care plan that is purposefully introduced and reinforced within regular healthcare encounters. Participants suggested techniques to increase the effectiveness of transition-related discussions, such as pairing transitional skills with developmental milestones and acknowledging the role of parents/caregivers. While AYAs emphasized that rheumatologists ideally should be part of this process, they also provided ideas for how to structure transition education using other team members or outside time-limited rheumatology appointments. In phase two, 137 AYAs (22.9 ± 3.3 years old; 89.1% female; 75.0% White; 19.0% see pediatric-only rheumatologist; 50.4% lupus) completed the quantitative survey. Most participants reported that to learn transition skills, they would be likely or very likely to engage in programs provided by a provider outside of their regular rheumatologist (81.8%); via a patient portal (77.2%), additional telehealth appointment (74.5%), additional in-person appointment (66.4%); or in a group setting (65.7%).

Conclusion: AYA patients desired structured opportunities to discuss transition skills with multidisciplinary health care team members in the clinic and beyond. Results suggest potential for collaborations with community providers or organizations outside of the traditional healthcare system. Incorporating AYAs’ expertise and preferences into the refinement of healthcare transition models may improve the feasibility of implementation and uptake by patients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/improving-healthcare-transition-implementation-recommendations-from-young-patients-with-rheumatic-conditions/