Evaluation of a Pediatric-Adult Dyad Care Model for Transitioning Youth With Childhood-Onset Systemic Lupus Erythematosus

DISCUSSION

This study demonstrates the success of our structured pediatric-adult dyad transition care model in promoting and maintaining continuity of care across all 3 milestones for youth with cSLE during the pivotal transition from pediatric to adult care. Building on previous work suggesting models of transition care for patients with cSLE, our present study describes a structured, collaborative model involving a 4-year integrated continuum of care between pediatric and adult rheumatologists following graduation from pediatric care.^23-25

High initial attendance marked the first milestone of success in our transition model, with 98.2% of patients referred from the STC to the YASLE clinic attending their first YASLE appointment. Among these, 96.2% attended their first appointment within 1 year of transition, with a median time of 3.5 (IQR 2.0-5.2) months, well below the 1-year benchmark. Conversely, prior studies on patients transitioning from pediatric to adult SLE care reported intervals of 8 to 11 months between the final pediatric visit and the first adult appointment.^2,3 This underscores the effectiveness of an integrated, prompt, and comprehensive transition process in facilitating continued care in the adult system, effectively minimizing the time gap between pediatric and adult services. Indeed, this approach to adult-provider engagement has been shown to be essential for a successful transition from pediatric to adult care, as shorter intervals between final pediatric and initial adult appointments increase the likelihood of establishing consistent adult care.^17,26

The second and third milestones of our transition model demonstrated sustained follow-up rates and were similarly robust. Specifically, 97.5% of patients attended at least 1 YASLE follow-up appointment, and 94.2% of those who had at least 2 YASLE clinic visits continued their care at MSH for a median of 5.1 years (IQR 2.7-7.1), with the longest follow-up reaching 8.3 years. Among them, 45.3% have graduated thus far from YASLE and transitioned to care under the adult rheumatologist. These findings underscore the durability of our transition model in achieving high levels of continuity in care with adult healthcare services.

Importantly, this high level of continued attendance was maintained despite potential barriers, such as distance from the adult specialty center, which is often recognized as a significant risk factor for poorer transition outcomes. For many youths, navigating logistical challenges such as travel distances can complicate consistent attendance at appointments and lead to attrition.²⁷ However, YASLE patients consistently attended their appointments despite residing at considerable distances from the clinic, as evidenced by our data. The high continued attendance further underscores the effectiveness of our transition model.

Beyond logistical challenges, clinical factors such as disease activity may play a role in the success of transition.³ In this study, 80.5% of patients with cSLE who transitioned had mild disease, as indicated by a median SLEDAI score of 2, a median SDI score of 0, and a low oral prednisone dose (< 5 mg/day). Although disease activity plays a crucial role in facilitating a successful transition, it is not sufficient on its own to ensure a smooth transition to adult care for patients with cSLE.⁵ Some transition models postpone the move to adult care until youth are well into their postsecondary studies, to ensure medical and social stability.²⁸ In contrast, our model successfully transitioned patients at 18 years of age regardless of disease activity, demonstrating that an early, structured transition process can still maintain high attendance rates across different transition milestones as well as continuity without compromising care even during major stressful life events.

The strength of our transition model lies in its collaborative, structured approach, which holistically addresses both medical and psychosocial concerns during this critical period. This approach is largely built on the active engagement and commitment of both pediatric and adult rheumatologists, ensuring evidence-based, patient-centered continuity of care. It incorporates effective communication strategies, such as sharing the patient’s clinical history and psychosocial context during STC visits and providing formal, comprehensive transition letters to equip adult care providers with a thorough understanding of the patient’s needs.^24,25 This approach has been linked to high patient and parent satisfaction, improved disease control or remission, reduced hospitalization rates, and sustained continual follow-up in adult care.^28-31

Pretransition interactions with the adult rheumatologist and continued pediatric rheumatologist involvement likely contributed to the model’s success, as studies show that early engagement with adult clinicians improves clinic attendance and care retention, and fosters familiarity, trust, and emotional preparedness.^{12,13,23,32-34} These interactions allow patients to set realistic expectations, address concerns about differing care systems, and establish a clear point of contact for managing disease flares.²⁸ This proactive and familiar approach not only alleviates common barriers but also creates an environment of support that encourages progressive self-management. The inclusion of a pediatric rheumatologist in the adult care setting during the acclimation period further supports this transition. This provides patients with cSLE with a gradual adjustment period, fostering confidence and continuity.^26,35 There were no direct costs associated with implementing this transition model, as it was integrated within existing clinical workflows. However, some strategic trade-offs were considered. The buy-in and commitment of the physicians involved is critical to the model’s success, as these cases are often complex, visits are often lengthy, and the remuneration is no different for these than for a more straightforward chronic disease follow-up in our provincial fee-for-service model. Ultimately, this pediatric-adult dyad transition care model effectively meets the unique needs of patients with cSLE, enabling comprehensive co-management and laying the foundation for sustained healthcare outcomes.

We acknowledge limitations inherent to this study’s retrospective design and reliance on chart review to ascertain the transition plan. Reasons for loss to follow-up were not always documented or available. The generalizability of our model to other healthcare systems may be limited because of differences in healthcare infrastructure, insurance coverage, and provider reimbursement models, which can affect care continuity and transition processes. A key feature of our combined clinic model is that both adult and pediatric rheumatologists can bill separately during the same visit; however, we acknowledge that this may not be feasible in other healthcare settings, posing a potential limitation. Currently, psychosocial support in the YASLE clinic relies on external resources, but we have recently developed a collaborative YASLE-Psychiatry clinic and plan to formally evaluate this in future studies. Other elements of the transition process that need to be evaluated prospectively are beyond the focus of this study, including evaluating patient satisfaction with the transition process, evaluating disease activity and damage progression, and assessing healthcare maintenance, medication adherence, healthcare utilization, and mortality rates.

In conclusion, this study highlights the success of our structured pediatric-adult dyad transition care model in fostering prompt initial attendance and ensuring continuity of care for youth with cSLE during the critical transition from pediatric to adult healthcare. Nearly all referred patients (98.2%) attended their first YASLE appointment, with 96.2% seen within a median time of 3.5 months. Sustained follow-up was equally robust, with 97.5% of patients returning for at least 1 additional visit, and 94.2% remaining in care at MSH after attending at least 2 visits despite challenges such as traveling significant distances to attend the YASLE clinic. Notably, 87.1% of the initial cohort remained under care at MSH after a median follow-up of 5.1 years, with the longest follow-up extending to 8.3 years. These results underscore the strength of this model rooted in collaborative care across all 3 milestones of transition, and communication between pediatric and adult rheumatologists and with the patients and their families. This model provides a replicable framework for optimizing chronic disease care transitions, as its principles are not exclusive to SLE care. This study supports a strong case for broader implementation of this transition model across other subspecialties, advocating for its widespread adoption.