A Comparison of Health Care Transition Practices, Views, and Barriers in Pediatric Rheumatology

On behalf of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Transition Workgroup, a team of researchers, led by Kiana Johnson, PhD, of the Department of Pediatrics at East Tennessee State University, Johnson City, published their findings in Journal of Rheumatology on the differences in health care transition (HCT) views and barriers among North American pediatric rheumatology clinicians from 2010 to 2018.¹

Review of Current Health Care Transition Practices

The paper included a comparison of current transition practices and beliefs among CARRA rheumatology practitioners,¹ with transition practices from a 2010 provider survey by Chira and colleagues in 2014.²

Authors defined HCT as the “planned process integration of adolescents/young adults from the pediatric health care system to the adult health care system with or without a transfer to a new clinician through a process that addresses the medical, psychosocial, educational/vocational needs.”¹

In 2018, CARRA members were asked to complete a 25-item online survey about HCT, using the Got Transition’s™ Current Assessment of Health Care Transition Activities to measure clinical transition processes on a scale of 1 to 4 (basic to comprehensive). The survey findings from 2010 and 2018 were then compared using bivariate analysis.¹

More than half of the surveyed providers, including pediatric rheumatologists, adult- and pediatric-trained rheumatologists, pediatric rheumatology fellows, and advanced practice providers, completed the questionnaire. Results showed that the most frequent target patient age to begin transition planning in pediatric rheumatology clinics was between 15 and 17 years. The majority of providers (75%) transferred patients prior to age 21 years or older. It was noted that a few providers used American College of Rheumatology (ACR) transition tools (31%) or had a dedicated transition clinic (23%). However, survey findings indicated that only 17% of providers had a transition policy in place and 63% did not consistently address health care transition with patients.¹

In comparison with the 2010 survey,² significant improvements were found in 3 of the 12 transition barriers, including availability of adult primary care providers, availability of adult rheumatologists, and pediatric staff transition knowledge and skills.¹

According to one of the CARRA rheumatology practitioners and study authors, Rebecca Sadun, MD, assistant professor in both medicine and pediatrics at the Duke University Medical Center, Durham, North Carolina, “We asked pediatric rheumatologists to self-assess the transition practices at their institutions, and we found that a small minority had a transition policy in place, and on the flip side, the majority felt they did not consistently address transition with all of their patients. We also asked about barriers to transition care, and there were a few areas where barriers appeared less than when a similar survey had been sent out 8 years earlier, including better availability of adult providers and improved transition knowledge and skills amongst staff in the pediatric rheumatology clinics.”

Improvements to HCT Practices Can Lead to Better Patient Care and Outcomes

Health care transition is an important process in pediatric rheumatology, but it has been inundated with challenges, including lack of addressing unmet needs and negative health outcomes from poor transition. However, these barriers have led to increased efforts to improve transition of care, including the development of international guidelines and recommendations, in light of which transition programs and readiness assessment tools have been established.³

A safe and mutually agreeable transition from pediatric to adult care remains one of the most challenging aspects of HCT in rheumatology. In addition to preparing young adults and their families for transition to adult care, a crucial component of successful transition is the assurance of equivalent care in an adult environment, especially for children with medical complexities.³

Dr Sadun stated, “It was wonderful to see [in our study¹] the areas in which we have progressed, as a field, over time, increasing the transition support that we offer to pediatric rheumatology patients and their families. At the same time, the data show how far we still have to go, to consistently deliver excellent transition care. Both on the pediatric side – preparing patients for transfer – and on the adult side – receiving young adult patients – we have much work to do. I think it is key that we find ways to collaborate between pediatric and adult rheumatology to help our patients succeed before, during, and after transfer to adult care.” 

In another study, researchers examined the literature related to transition to adult care for youth with rheumatic conditions and highlighted resources for practitioners to improve the transition process in pediatric and adult primary and specialty care settings. They noted the new initiative on transition care by the ACR and the American College of Physicians (ACP) Council on Subspecialty Societies.⁴

Providers may not be equipped to deal with both the psychologic and medical aspects of care during the transition of a pediatric patient to adult care. In addition patients are often reluctant to leave health systems and care teams with which they are familiar, the result of which may be insufficient transition efforts. A large percentage of rheumatology clinicians have been observed to have inadequate transition practices that do not meet the needs of patients and their families.⁴

Johnson and colleagues described the perspectives and practices of North American pediatric rheumatology providers during the transition of patients from pediatric to adult rheumatology care, findings from which showed improvements from the 2010 CARRA HCT survey. For example, the planned age of patient transfer and the estimated age at time of transfer were significantly lesser in the 2018 vs 2010 survey. While the average patient age at transfer may be decreasing, data suggest that many pediatric specialists still continue to care for patients with childhood-onset conditions well into adulthood.^1,2

Authors also highlighted the objective scoring method used in the study that measured the implementation of transition processes corresponding with the Six Core Elements of Health Care Transition™ — Transition Policy, Transition Tracking and Monitoring, Transition Readiness, Transition Planning, Transfer of Care, and Transfer Completion.¹

Although the CARRA survey of pediatric rheumatology clinicians demonstrated some improvements in HCT knowledge, barriers, and processes, most rheumatology practices still provide minimal support during HCT, and the tools created to promote a structured HCT implementation are being adopted slowly.¹

In their study, Johnson and colleagues concluded, “Further research is needed to understand how to efficiently and effectively facilitate the planning, transfer, and integration into adult care for young adults with childhood-onset rheumatic diseases, with the need to support providers and practices in the process creating structures to promote best practices in the care of adolescent and young adult rheumatology patients.”¹

Accordingly, many North American and European medical organizations have begun to outline recommendations for HCT that are specific to their population. In various clinical settings, transition support can be assessed and enhanced through quality improvement methodology, using the Current Assessment of Health Care Transition Activities tool.⁵

In Summary

It is the goal of all rheumatology clinicians to improve the health care of their pediatric patients as these individuals will mature into young adults who must assimilate into the adult health care system. It is often a time of great stress for the patient, the patient’s family, and the practicing clinician. The goals of transition are to improve the ability of youth or young adults to manage their own health and effectively use health care services, and to have an organized clinical process in rheumatology and adult practices to facilitate transition preparation, transfer of care, and integration into adult-centered care.

Over the period of the next few years, ongoing studies are anticipated to provide further possible benefits to improve continuity, adherence, and independence in medical care.

References

1. Johnson K, Edens C, Sadun RE, et al; for the CARRA Transition Workgroup. Differences in health care transition views, practices, and barriers amongst North American pediatric rheumatology clinicians from 2010 to 2018. J Rheumatol. Published online February 1, 2021. doi:10.3899/jrheum.200196
2. Chira P, Ronis T, Ardoin S, White P. Transitioning youth with rheumatic conditions: Perspectives of pediatric rheumatology providers in the United States and Canada. J Rheumatol. 2014;41:768-779. doi:10.3899/jrheum.130615
3. Teh KL, Hoh SF, Arkachaisri T. The coming-of-age transition care for adolescents with rheumatic disease-where are we and what have we done in Asia? J Clin Med. 2021;10(4):821. doi:10.3390/jcm10040821
4. White PH, Ardoin S. Transitioning wisely: improving the connection from pediatric to adult health care. Arthritis Rheumatol. 2016;68:789-794. doi:10.1002/art.39554
5. McManus M, White P, Barbour A, et al. Pediatric to adult transition: a quality improvement model for primary care. J Adolesc Health. 2015;56(1):73-8. doi:10.1016/j.jadohealth.2014.08.006