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Professional organizations across all disciplines have evaluated the best ways to transfer the care of adolescent and young adult patients with long-term health conditions to adult care models.1,2 Among patients with rheumatic musculoskeletal diseases, this care transition is more important because of the continuing disease activity and morbidity observed in adults with childhood disease onset.3
In a review published in Current Rheumatology Reports, Janet E. McDonagh, MD, FRCP, of the Versus Arthritis Center for Epidemiology at the University of Manchester and the National Institute for Health Research Biomedical Research Center in the United Kingdom, and Albert Farre, reviewed the most recent literature focused on transitional care in adolescents and young adults with rheumatic musculoskeletal diseases. Researchers of the study aimed to examine the importance of implementation of transitional care practices in pediatric rheumatic musculoskeletal diseases.
An Unmet Need
Multiple publications have highlighted the current deficits in transitional care. A 2017 study of European rheumatology centers,4 for example, indicated that although 7% had transition services available for young patients with rheumatic diseases, only a minority of centers stated the presence of a written transition policy, and staff dedicated to transitional care. Other investigators have reported unmet training needs among both pediatric and adult physicians, suggesting ample room for improvement.³
One research group from the United Kingdom conducted focus groups with young adult participants with long-term rheumatic conditions. Study results from the focus groups showed that, of the 5 research priority areas, participants (mean age, 16 years) were most concerned with the psychosocial effect of transitioning from pediatric to adult care.5
Transitional Care: A 3-Stage Process
The process of transitional care typically follows 3 steps3: the first step is a lengthy phase of preparation that begins in early adolescence; the second step is a shorter phase that occurs, typically in late adolescence, around the event of transfer; and the final step includes the phase when young adult patients “gradually engage with the new adult services.”
Current evidence regarding the optimal timing of the first phase has suggested that transitional care should begin in early adolescence; more recent research of adolescents and young adults with other long-term health conditions also confirmed this suggestion. Specifically, between the ages of 11 and 12 years is a “developmentally appropriate time” to be in transitional care, in conjunction with the other transitions that take place during adolescence, including puberty.3,6
Timing of the second phase is currently governed by the healthcare system, rather than the patient’s developmental status. This phase tends to have fixed age-related criteria. Researchers of a systematic review in 2016 indicated “moderate evidence” that transition models, which transfer patients in either late adolescence or early adulthood, can lead to improved transition outcomes and patient satisfaction.7
There is less available evidence when the third phase of transition ends, noted McDonagh JE and Farre A in their paper. The third phase is rife with challenges as the patient engages with adult services. One review by indicated that only 14 of 71 primary studies focused on the third phase of transition. Young adults vary significantly in maturity and other key psychosocial developmental aspects. It was observed in another transition study that the cohort had mastered only 9 of 20 transition readiness items, with key deficits including healthcare utilization and healthcare self-advocacy and self-management.3,8
“Data [from such research] reinforce the need to consider this third phase of transition, both in practice and research, and the importance of ensuring the developmental appropriateness of adult rheumatology services,” Dr McDonagh wrote.3
Challenges in Measuring Transitional Success
The first objective evaluation of evidence-based transitional care programs for rheumatology was conducted >15 years ago.3 Since then, numerous researchers have undertaken reviews of various transitional care models. Researchers of one such review found that of 8 identified transition programs across 6 countries, variability existed in structures, staffing, and processes; there was also lack of standardized outcomes and measures of system efficacy.9
Investigators of more recent literature suggested that clinics targeted towards young adults (aged 16 to 25 years) were associated with better outcomes; however, the term ‘transition clinic’ could be difficult to define. McDonagh and Farre noted in the review that transition clinics can range from ad hoc clinics to clinics with members of both care teams present, sometimes at the same visit.3
Researchers of another study indicated that the routine use of assessment tools was not particularly well-embedded in practice, with only 36.4% of surveyed European rheumatology centers reporting the use of a checklist format tools as part of individualized transition plans.4
Gauging Patient Readiness
In addition to mastery of basic healthcare tasks, patient readiness must be considered in terms of condition complexity, competing agendas, limitations in time, personnel, resources, and the potential for readiness regression. A study identified several condition- and noncondition-specific transition readiness tools, including the Readiness for Adult Care in Rheumatology questionnaire.10 The most robustly validated of these tools was the Transition Readiness Assessment Questionnaire (TRAQ), evaluated by researchers in New South Wales, Australia, with results published in BMC Pediatrics.11 Despite the success of the study, other researchers were unable to validate the tool in a population of younger adolescents, raising questions regarding TRAQ’s suitability in this patient population.
The successful engagement of adolescent and young adult patients has been reported with a team-based approach to care transitions, when team members have the knowledge and skills to address adolescent-specific issues.3
Outcomes of Transitional Care
Substantial evidence exists supporting the benefits of transitional care both in and out of the rheumatology specialty. Investigators found among a transitional research cohort that the promotion of health self-efficacy, appropriate parental involvement, and a meeting with the adult care team resulted in patient satisfaction, increased well-being, and improved participation and autonomy during office visits.12
Despite these data, no gold standard outcome measure for transitional care exists. Current measures may be biased toward traditional medical health outcomes and knowledge rather than vocational or psychologic outcomes. The challenge in defining what constitutes a successful transition is that definitions are contingent on the perspectives being considered, according to the review by McDonagh and Farre.3
Systemic Considerations for Care Transition
By definition, transitional care is focused on both pediatric and adult rheumatology services; however, substantial organization and policy gaps exist related to these transitional services, particularly in terms of integrated planning. Researchers of a study conducted in the United Kingdom indicated a perceived lack of both local and national policies to guide joint institutional healthcare arrangements, including transitional health and social care services. It was also indicated that differences in organizational culture and funding have made both inter- and intra-agency coordination difficult to achieve.13 In rheumatology, this gap becomes particularly evident with regard to the continuity of biologics across a patient’s transition period.
Additional systemic challenges include coordination, communication, consistency, consensus, and continuity3; the 5 “Cs” of patient care are especially critical for adolescents and young adults with multisystem rheumatic musculoskeletal diseases, such as systemic lupus erythematosus or vasculitis.
Looking Ahead: Avenues for Future Research
A suggestion put forth by McDonagh and her colleague is a shift in mindset; rather than making transition the primary focus for adolescent rheumatology, they recommend adopting a life course approach to bridge the gap between adolescent, young adult, and adult care.3
“[Adolescent and young adult] rheumatology might be better placed to successfully address not only the health transition of [adolescents and young adults] with [rheumatic musculoskeletal diseases] but also all other key transitions of this life stage (eg, pubertal, educational, and social)… regardless of the setting of services,” McDonagh wrote. Future researchers may focus on a [socioecologic] model of transitional readiness, addressing the interactions between patients, caregivers, and providers — the “likely targets of any intervention to improve health transitions.”3
One study, published in the Journal of Adolescent Health, identified 4 broad interaction styles adopted by adolescents and young adults approaching transition: laid back view, anxious, seeking independence and autonomy, or socially oriented with peers and family.14 Study investigators raised several new questions and potential research avenues, for eg, whether the same transition model can be applied to these 4 styles of patient interaction.
In the last decade, there has been a call to recognize emerging adulthood in rheumatology. Adolescent and young adult rheumatology have become a priority, in addition to improving transitional care. McDonagh and colleagues are hopeful that this momentum will move rheumatology care forward into the future.
“[W]ith increased collaboration between pediatric and adult rheumatology and active involvement of [adolescents and young adults] and their families, we will eventually get health transition right and developmentally appropriate for everyone involved,” they concluded.3
Disclosure: Several study authors declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.
References
1. White PH, Cooley WC, Transitions Clinical Report Authoring Group,American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2018;142(5).
2. Pediatric to adult care transitions initiative. American College of Physicians website. https://www.acponline.org/clinical-information/high-value-care/resources-for-clinicians/pediatric-to-adult-care-transitions-initiative. Accessed September 18, 2019.
3. McDonagh JE, Farre A. Transitional care in rheumatology: a review of the literature from the past 5 years. Curr Rheumatol Rep. 2019;21(10):57.
4. Clemente D, Leon L, Foster H, Carmona L, Minden K. Transitional care for rheumatic conditions in Europe: current clinical practice and available resources. Pediatr Rheumatol Online J. 2017;15.
5. Parsons S, Thomson W, Cresswell K, Starling B, McDonagh JE; Barbara Ansell National Network for Adolescent Rheumatology. What do young people with rheumatic disease believe to be important to research about their condition? A UK-wide study. Pediatr Rheumatol Online J. 2017;15:53.
6. Skov M, Teilmann G, Damgaard IN, et al. Initiating transitional care for adolescents with cystic fibrosis at the age of 12 is both feasible and promising. Acta Paediatr. 2018;107(11):1977-1982.
7. Yassaee A, Hale D, Armitage A, Viner R. The impact of age of transfer on outcomes in the transition from pediatric to adult health systems: a systematic review of reviews. J Adolesc Health. 2019;64(6):709-720.
8. Hart LC, Patel-Nguyen SV, Merkley MG, Jonas DE. An evidence map for interventions addressing transition from pediatric to adult care: a systematic review of systematic reviews. J Pediatr Nurs. 2019;48:18-34.
9. Clemente D, Leon L, Foster H, Minden K, Carmona L. Systematic review and critical appraisal of transitional care programmes in rheumatology. Semin Arthritis Rheum. 2016;46(3):372-379.
10. Stinson J, Spiegel L, Wantabe Duffy K, et al. Development and testing of the readiness for adult care in rheumatology (RACER) questionnaire for adolescents with rheumatic conditions [EULAR abstract THU0320]. Ann Rheum Dis. 2013;71(suppl):264.
11. Zhang LF, Ho JSW, Kennedy SE. A systematic review of the psychometric properties of transition readiness assessment tools in adolescents with chronic disease. BMC Pediatr. 2014;14:4.
12. Colver A, McConachie H, Le Couteur A, et al; Transition Collaborative Group. A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions. BMC Med. 2018;16(1):111.
13. Maniatopoulos G, Le Couteur A, Vale L, Colver A. Falling through the gaps: exploring the role of integrated commissioning in improving transition from children’s to adults’ services for young people with long-term health conditions in England. J Health Serv Res Policy. 2018;23(2):107-115.
14. Hislop J, Mason H, Parr JR, Vale L, Colver A. Views of young people with chronic conditions on transition from pediatric to adult health services. J Adolesc Health. 2016;59(3):345-353.
