AYAs Emphasize Importance of Patient Perspectives During Health Care Transition


None of the adolescent and young adult (AYA) participants in a study reported experiencing the Six Core Elements of Healthcare Transition during their rheumatology health care transition.

According to adolescents and young adults (AYAs) with rheumatic conditions, patient perspectives are important in research and practice. This finding was published in Arthritis Care & Research, where AYAs also stressed the importance of patients becoming independent and empowered through the health care transition process with help from specialized rheumatology teams.

The Six Core Elements of Healthcare Transition are policy and guide, tracking and monitoring, readiness, planning, transfer of care, and transition completion. To understand how to best implement these elements within rheumatology care, the study authors conducted 2 phases of research.

Phase 1 included 39 AYAs—defined as individuals aged 16 to 28 years—with a median (SD) age of 20.8 (2.9) years. This group participated in 7 focus groups between July 2019 and January 2020, during which they discussed how they view or experienced the Six Core Elements and how to implement specific components.

In phase 2, the authors conducted a national survey with 137 AYAs, with a median age of 22.9 (3.3) years, to evaluate the generalizability of the findings and suggestions brought up in the focus groups. Afterward, social science researchers, pediatric rheumatologists, and patients performed mixed methods analyses.

In phase 1, the authors found that none of the participants reported experiencing the Six Core Elements prior to the focus group.

The group responded favorably and said the model has potential to fill critical gaps the participants reported experiencing within their own care. However, participants also noted that the model will have a limited impact if AYA patients are not meaningfully engaged in the health care transition process.

To ensure high efficacy of the Six Core Elements in clinical use, the participants recommended motivating AYAs by framing the transition as an opportunity for empowerment, implementing a structured education care plan, and considering the role of parents of AYAs.

To understand how generalizable these findings are, the researchers then conducted a survey in phase 2. They first asked how participants experienced the following health management skills:

  • Obtain timely health care
  • Communicate rheumatology care plan
  • Fill medication prescriptions and perform lab tests on time
  • Communicate medical history
  • Track symptoms
  • Manage symptoms in day-to-day routines
  • Talk with office staff to make appointments, fill out paperwork, and access health records
  • Use insurance policy and understand what it covers
  • Advocate when not satisfied with care
  • Exercise legal rights as an adult patient
  • Find support for health needs from community and social networks

They also asked whether the management skill is their preferred mode of learning and who they learned the skill from, including parents, their rheumatology team, peers, a website, or a phone app.

Of 11 skills, there were significant differences between experienced and preferred modes of learning for 9 skills, not including “obtain timely health care” and “communicate rheumatology care plan.”

“For all 11 skills, more participants reported that their rheumatology team was their preferred source of learning compared with what they experienced, and fewer participants reported their parents as their preferred source of learning compared with what they experienced,” the study authors said. “For 9 of the 11 skills, participants most commonly reported they experienced their parents as their source of learning even though they would have preferred their rheumatology team.”

Additionally, most participants in the survey group said they preferred to learn about symptoms and causes of rheumatic disease (83.9%), relationships between rheumatic disease and drugs and alcohol (71.5%), reproductive and sexual health (68.6%), and mental health (67.2%) from a rheumatology team.

Further, large proportions of AYAs said they would be comfortable initiating a conversation with their rheumatologist on these topics, and most AYAs reported being likely or very likely to participate in transition programs outside of regular rheumatology appointments, both in person and virtually.

“Ultimately, this work reinforces concepts of patient empowerment in self-management and how we need to better incorporate AYA perspectives to ensure optimal execution and uptake of educational programs,” the authors concluded.


Carandang K, Wells CK, Guglielmo D, et al. Adolescents' and young adults' recommendations for implementing healthcare transition in rheumatology: a mixed methods study. Arthritis Care Res (Hoboken). Published online June 30, 2022. doi:10.1002/acr.24977

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