A Team Approach Improves the Transition from Pediatric to Adult Care

Gorynvd / shutterstock.com

Nearly all adolescents and young adults (AYAs) with chronic pediatric rheumatic disease require transfer of care to an adult rheumatologist, yet almost half are lost from care at the time of transfer.^1-3 Although sometimes framed as a discrete event, transition refers to the longitudinal process, often spanning several years, in which AYAs and their families are prepared for the transfer and integration into an adult healthcare delivery model.

Healthcare transition literature often focuses on the role of the pediatric provider, overlooking the importance of the pediatric-adult provider dyad and the continuation of the transition process into the first few years of adult care. This article provides insight into the underlying reasons why improving healthcare transition can be a daunting task, followed by practical tips and resources for the development and implementation of an effective healthcare transition process.

An Emotionally Charged Topic

When the topic of healthcare transition is addressed, it is critical to first understand and acknowledge the emotions that may be elicited from patients, families and the healthcare team, which range from frustration to stress, fear and uncertainty. Why is healthcare transition often such an emotionally charged issue among patients and providers?

First, the stakes are high. Our AYA patients with chronic rheumatic disease are often medically complex with higher rates of mortality and organ-threatening morbidity than those of their adult counter­parts, particularly in pediatric systemic lupus erythematosus (pSLE).^4,5 More severe disease often necessitates more aggressive immunosuppressive therapy, resulting in a challenging combination of disease-related damage, drug-related toxicities and decreased medication adherence during a period of development when AYAs are attempting to establish their own identities.^6,7

Second, we are not doing well. A recent study among publicly insured and uninsured AYAs with chronic rheumatic disease reports an average gap of 221 days between the last pediatric visit and the first adult visit. Unscheduled hospitalizations and emergency department (ED) visits occurred for over 25% and 50% of patients, respectively, and end-stage renal disease or death occurred in 15% of patients with rheumatic diseases after their last pediatric visit.⁸ All patients with end-stage renal disease and those who died also experienced prolonged gaps in care.

These findings parallel other multicenter cohort studies demonstrating increased pSLE-related mortality and readmissions during transition age.^9,10

Although structured healthcare transition processes have been shown to improve outcomes, a 2018 Childhood Arthritis and Rheumatology Research Alliance survey found only 37% of U.S. and Canadian pediatric and medicine-pediatric rheumatology providers consistently address healthcare transition with their patients.^11,12

Third, emotional vulnerability of patients, families and providers is unavoidable during the transition from pediatric to adult care. Brené Brown, professor of social work at the University of Houston, describes vulnerability as “uncertainty, risk and emotional exposure.” And after successfully achieving remission in a patient with pSLE with a high disease burden and complex social situation, pediatric providers and patients alike experience this vulnerability as uncertainty in care continuity, risk of disease flare and an underrecognized emotional exposure after years of a stable relationship with one pediatric provider.

Parents carry a similarly challenging emotional burden, transitioning from a managerial role as their child’s medical decision maker to a consultant role, in which they relinquish a significant amount of control of their child’s medical care.

Acknowledging these emotions can help us come together as a healthcare team to best support not only our patients, but also each other, as we tackle a difficult but important problem.

Start with Leadership Support

We presented our healthcare transition project at a division meeting, and many providers were hesitant to put in extra effort given multiple competing demands and uncertainty about whether we could really move the needle on improving transition.

Obtaining leadership support prior to implementation of a healthcare transition process or intervention is important for three reasons. First, a leader can communicate a clear long-term vision and motivate team members to actively engage in an emotionally charged, challenging topic.

Second, improving healthcare transition outcomes requires an integrated, multi­disciplinary approach that may be resource intensive. A leader can advocate for adequate clinical, administrative and health information technology (IT) support required to build and sustain a transition process.

Third, poor healthcare transition out­comes are not unique to rheumatology. A leader can often coordinate initiatives at a higher level, between divisions and/or institutions, to increase awareness of your project and leverage existing resources and content expertise.

Additionally, aligning your healthcare transition priorities with existing institutional priorities, such as decreasing hospital readmissions or improving patient safety, can be an effective way to garner leader­ship support.

A recent study among publicly insured & uninsured AYAs with chronic rheumatic disease reports an average gap of 221 days between the last pediatric visit & the first adult visit.

Create a Transition Roadmap

My child’s doctor never mentioned transition until my son turned 19 and was told it was time for him to transfer to adult care. I felt completely caught off guard and abandoned.

Standardization and normalization of the transition from pediatric to adult care is an important first step for a healthcare team. Standardizing transition processes ensures all patients have access to transition preparation and support, reducing the number of patients who fall through the cracks at their time of transfer. Normalizing the transition process creates the expectation that transition is an expected developmental step for all AYA patients, which will help build trust and motivate them to engage in transition preparation.

The Six Core Elements of Health Care Transition plan is the gold standard for a structured approach to pediatric-to-adult transitional care.¹³ Establishing all six core elements, which range from consistent dissemination of a transition policy to confirming transfer completion, is still an aspirational goal for many rheumatology practices.

Achieving a quick win is important to inspire team engagement and morale. Creation and dissemination of a transition policy, which describes the practice’s approach to transition, privacy and consent issues, and timing of transfer, is often a great place to start.

The goal of a transition policy is to provide a guide for AYAs to follow through the developmental process of becoming independent in their healthcare. If possible, try to avoid inflexible transition policies with a strict age at which transfer should occur. Rather, providers should engage in shared decision making with patients to choose a transfer date at least 12 months in advance of the anticipated transition to allow for development of self-management skills, navigation of insurance barriers and identification of an adult rheumatology provider.

Additionally, transition policies should be introduced early, at age 12–14 years, to encourage gradual development of self-management skills and evolving parent-child roles.

Examples of transition policies can be found within the Six Core Elements of Health Care Transition Implementation Guide and the ACR website.¹³

Strategize with Your Team

Implementation of a healthcare transition process is not one-size-fits-all. After creation and dissemination of a transition policy, we suggest choosing from a few different strategies to help your team determine which specific core elements to focus on next.

1. Close the most urgent gaps first. If you walk into an emergency department shift as multiple traumas roll in, you’re going to stabilize those patients before moving to the full waiting room. Similarly, if you have multiple Medicaid patients with lupus neph­ritis who are lost to follow-up after age 18 due to loss of insurance, targeting the core elements of transition planning and tracking/monitoring for a narrower, high-risk population may be a good starting point. Of course, tackling the biggest problem first may be resource intensive, but it may also spark immediate buy-in from key stakeholders, such as division leadership.
2. Obtain a quick win. Starting your healthcare transition project with a more attainable short-term goal may not drastically move the needle immediately in terms of changing patient outcomes, but it can boost team morale and motivation and inspire more active long-term engagement to accomplish more aspirational outcomes. If you are targeting regular transition readiness assessments, send a celebratory divisionwide email for every 25 patients who complete a Transition Readiness Assessment Questionnaire. If possible, include a positive patient quote regarding development of self-management skills.
3. Leverage your division or institutional resources. A large variation in administrative, clinical and health IT support exists across rheumatology practices. If you have a full-time, on-site social worker invested in healthcare transition, incorporate them into developing your process map. If, instead, you have excellent medical assistant support, try to boost your transition-readiness screening and transition policy dissemination. Practices with health IT support may build dashboards to facilitate completion of transition processes at the point of care or capture data to populate a patient registry.
4. Align with larger institutional goals or interorganizational networks. Institutions often have a list of high-priority areas for improvement, such as reducing hospital readmissions or decreasing patient safety events. Small institutional grants may be available for projects that align with these goals and can be a great way to quickly garner resources needed for a successful multifaceted healthcare transition process.

Individual practices can also leverage the resources of professional organ­izations through which experience is shared and goals related to the implementation of healthcare transition processes are developed. For example, a number of pediatric rheumatology sites participate in the Childhood Arthritis Rheumatology Research Alliance Transition Learning Collaborative, which is utilizing quality improvement and implementation science methodology to determine the feasibility, acceptability and impact of transition policy interventions in rheumatology.

Close the Gaps

I called to schedule an adult rheumatology appointment after my last pediatric visit, but they did not accept Medicaid. I did not know who to contact since I had been “discharged” from pediatric care, so I just hoped I would be fine without my lupus medication.

A spectrum of specific transition interventions have been trialed in AYAs with chronic diseases to avoid lapses in care, including transition coordinators, transition clinics and overlapping pediatric and adult visits. Identification of a transition coordinator has been most consistently identified as a key element of a successful transition program.¹⁴

Even though the roles and responsibilities of a transition coordinator can vary depending on local healthcare transition needs, their primary goal is to facilitate timely and safe transfer from pediatric to adult care. This often entails encouraging the AYA to practice self-management skills, navigating barriers to establishing adult care, orienting the AYA, and their family to differences between pediatric and adult care models and supporting the AYA both during and immediately following the transfer to adult care.

If the AYA misses their first adult rheuma­tology visit, the pediatric rheumatologist should be notified so that barriers to transfer of care can be reassessed.

Transition coordinators can also assist in management of a registry of transition-aged patients with chronic rheumatic disease, which is a challenging but vital component of a successful healthcare transition process. Patient registries should track transition readiness, barriers to successful transition and post-transfer outcomes, such as establishment of outpatient care with an adult rheumatologist and unplanned acute care visits.

By tracking metrics specifically tailored toward transition in a unified location, registries can proactively identify patients who need more dedicated resources to ensure a smooth transition. For example, a quick report could be run on a registry to obtain a list of patients older than 16 with public insurance, a history of poor healthcare engagement (i.e., multiple no-show visits) and high disease-related morbidity or mortality risk. A social work intervention could be triggered for these patients to address unmet social needs that lead to poorer transition outcomes.

For pediatric providers, the referral to an adult provider is an important step that needs to be approached purposefully. The expectation should be set for communication with the adult provider prior to and after their first visit. At minimum, a written medical summary should be sent with medical records, but in the case of patients with more complicated medical or psychosocial situations, more direct communication is needed. If possible, the AYA should have their own electronic or physical copy of their medical summary, which is common practice in other high-risk transfers of care, such as neonatal intensive care unit discharges.

Transfer completion should also be confirmed prior to refusing medication refills or further follow-up care.

Bridge the Culture Chasm

I showed up to the first visit with my adult rheumatologist, but I was 20 minutes late and was told I needed to call to reschedule. I haven’t gotten around to it yet.

As a healthcare team, it can be frustrating to invest significant time and resources into a seemingly comprehensive healthcare transition process, only to have the patient fail to establish care with an adult provider. Orienting patients to differences in pediatric and adult care models is important. For example, visits may be shorter, social work resources more limited, approaches to medication dosing and administration may vary, and no-show and late policies are more strictly enforced. Explaining these differences before transfer and validating different approaches to care will help the AYA and their family form a trusting relationship with their new provider.

Instead of referring to transfer as “when we’re kicking you out,” frame transfer as a positive developmental milestone and express confidence in the adult provider. Moreover, emphasizing that adult providers are far better equipped to manage their future needs, such as pregnancy, can help AYAs better understand the reason for transfer.

For the adult rheumatologist, the first visit should be viewed as a critical opportunity to gain the trust of the transferring AYA and their family. The WELCOME mnemonic is a helpful tool developed by Rebecca E. Sadun, MD, PhD, et al. to aid the adult rheumatologist seeing an AYA patient for the first time.¹⁵

In short, prior to starting the visit, the provider should take time to welcome the patient to adult care; explain differences between pediatric and adult care models; let the patient and parents know their respective roles; communicate—reassure the patient you are in touch with the pediatric provider as needed; give the patient and parents an opportunity to ask questions about the new clinic; minimize medical changes during the first visit; and set expectations going forward.

Pediatric and adult providers should continue to partner during the vulnerable time following transfer, with open communication regarding management of medical or psychosocial issues.

Finally, introducing the topic of transition and self-management early can mitigate the sense of abandonment AYA patients and families often report at the time of transfer to adult care. The family should be educated regarding the shared model of care, in which the parental role gradually shifts from care provider to consultant while the patient role shifts from care receiver to care participant, to manager, and ultimately to supervisor/CEO.

Parents should be counseled not to withdraw support completely at the time of transfer to adult care, but rather continue to give responsibility to the AYA based on their self-management skills and offer support when needed. Examples of transition readiness assessments include the Transition Readiness Assessment Questionnaire , the Got Transition Readiness Assessment and the Readiness for Adult Care in Rheumatology questionnaire, which assesses rheumatology-specific transition readiness skills.¹⁶

Conclusions

Pediatric and adult rheumatologists share the challenging task of transitioning our AYA patients and families to an adult healthcare delivery model. We can start to move the needle on improved outcomes by acknowledging emotions surrounding healthcare transition, obtaining leadership support for change and utilizing existing tools and resources to develop a structured healthcare transition process. Perhaps most importantly, pediatric and adult providers can develop a partnership in care delivery during this vulnerable time for AYA patients and their families.

Improving healthcare transition may seem like a daunting task, but do not be afraid to start small and celebrate your successes. “You don’t have to see the whole staircase. Just take the first step.”—Martin Luther King Jr.

Rosemary Peterson, MD, MSCE, is a pediatric rheumatologist at Dell Children’s Medical Center of Central Texas, Austin.

Joyce Chang, MD, MSCE, is an attending rheumatologist in the Division of Rheumatology, the Lupus Program and the Lupus Integrated Nephritis Clinic at Children’s Hospital of Philadelphia.

References

1. Hazel E, Zhang X, Duffy CM, et al. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2010 Jan;8:2.
2. Hersh A, von Scheven E, Yelin E. Adult outcomes of childhood-onset rheumatic diseases. Nat Rev Rheumatol. 2011 May;7(5):290–295.
3. 3Son MB, Sergeyenko Y, Guan H, et al. Disease activity and transition outcomes in a childhood-onset systemic lupus erythematosus cohort. Lupus. 2016 Nov;25(13):1431–1439.
4. Tucker LB, Uribe AG, Fernandez M, et al. Adolescent onset of lupus results in more aggressive disease and worse outcomes: Results of a nested matched case-control study within LUMINA, a multiethnic US cohort (LUMINA LVII). Lupus. 2008 Apr;17(4):314–322.
5. Hersh AO, Trupin L, Yazdany J, et al. Childhood-onset disease as a predictor of mortality in an adult cohort of patients with systemic lupus erythematosus. Arthritis Care Res (Hoboken). 2010 Aug;62(8):1152–1159.
6. Mina R, Brunner HI. Pediatric lupus—Are there differences in presentation, genetics, response to therapy, and damage accrual compared with adult lupus? Rheum Dis Clin North Am. 2010 Feb;36(1):53–80.
7. Pai ALH, Ostendorf HM. Treatment adherence in adolescents and young adults affected by chronic illness during the health care transition from pediatric to adult health care: A literature review. Child Health Care. 2011 Jan;40(1):16–33.
8. Bitencourt N., Bermas BL, Makris UE, et al. Time to completed visit and healthcare utilization among young adults transferring from pediatric to adult rheumatologic care in a safety‐net hospital. Arthritis Care Res (Hoboken). 2020 Sep 9. Epub ahead of print.
9. Lawson EF, Trupin L, Hersh AO, et al. A168: Systemic lupus erythematosus in-hospital mortality risk across ages: A national estimate. Arthritis Rheumatol. 2014 Apr;66 Suppl 11:S217.
10. Yazdany J, Marafino BJ, Dean ML, et al. Thirty-day hospital readmissions in systemic lupus erythematosus: Predictors and hospital- and state-level variation. Arthritis Rheumatol. 2014 Oct;66(10):2828–2836.
11. Gabriel P, McManus M, Rogers K, et al. Outcome evidence for structured pediatric to adult health care transition interventions: A systematic review. J Pediatr. 2017 Sep;188:263–269.e215
12. Johnson K, Edens C, Sadun RE, et al. Differences in health care transition views, practices, and barriers among North American pediatric rheumatology providers from 2010 to 2018. J Rheumatol. 2021 Feb 1. Epub ahead of print.
13. White P, Schmidt A, Shorr J, et al. Six Core Elements of Health Care Transition 3.0. Washington, DC: Got Transition. The National Alliance to Advance Adolescent Health. 2020 Jul.
14. Clemente D, Leon L, Foster H, et al. Systematic review and critical appraisal of transitional care programmes in rheumatology. Semin Arthritis Rheum. 2016 Dec;46(3):372–379.
15. Sadun RE, Schanberg LE. Transition and transfer of the patient with paediatric-onset lupus: A practical approach for paediatric and adult rheumatology practices. Lupus Sci Med. 2018 Aug 13;5(1):e000282.
16. Stinson J, Spiegel L, Watanabe Duffy K, et al. THU0320 Development and testing of the readiness for adult care in rheumatology (RACER) questionnaire for adolescents with rheumatic conditions. Ann Rheum Dis. 2013;71:264.