A novel score for transition success of pediatric rheumatology patients

Abstract

Background

Success of transition from pediatric to adult care depends on many factors. Various scores for transition readiness have been developed, but few patient-level transition success scores exist. Without such a metric, it is difficult to assess the impact of programmatic interventions to improve the process of healthcare transition. We created a novel transition success score for pediatric rheumatology patients.

Methods

Pediatric rheumatologists consulted the literature and adolescent health experts. Four components were included in the final score: attending a first adult appointment in the time frame designated by the pediatric rheumatologist (component 1), refilling medications with the adult provider within 3 months of the first adult appointment (component 2), no rheumatology-related emergency department visits in the first year after transition (component 3), and attending a second adult appointment (component 4). Scores were determined via retrospective electronic medical record (EMR) review. Each component was weighted as one-quarter of the total transition success score.

Results

From 2017–2024, we identified 357 patients with a final visit to pediatric rheumatology using a combination of direct provider notification of transition and EMR review. Of those, EMR records were available to score transition success for 198 patients. Optimal transition success (ie achievement of all 4 components of successful transition) was accomplished by 72/198 (36 %) patients; 77/198 (39 %) patients scored 75 %. Only 3 patients (1.5 %) scored 0 %. When considered by component, 113 patients (57 %) met component 1, 150 (76 %) met component 2, 165 (83 %) met component 3, and 159 (80 %) met component 4. We were unable to document attendance at a second adult rheumatology appointment for a surprising 20 % (39/198) of transitioned patients.

Conclusions

We have developed a transition success score and applied it to an initial cohort of patients who transitioned from our pediatric rheumatology clinic. Although 149/198 patients (75 %) fulfilled 3 or 4 out of 4 components of successful transition, we have identified clear opportunities for improvement. Our next steps include evaluating components of our transition program, such as patient self-reported transition readiness or receipt of a transition summary letter, against the transition success score to better understand which factors predict successful transition.

Graphical Abstract

Highlights

• •We propose a novel definition for successful rheumatology healthcare transition.
• •Only 36 % of patients in this historical cohort achieved optimal transition success.
• •A surprising 20 % of patients did not attend a 2nd adult rheumatology appointment.
• •Successful transition is measurable and, presumably, targetable.

1. Introduction

Healthcare transition is best thought of as a process and not just a single event. Over time, adolescents with chronic healthcare needs must be prepared through the transition process to mentally, financially and emotionally transfer from pediatric to adult based care. Recent estimates suggest more than 14 million children in the U.S. have special healthcare needs, but that less than a quarter have received healthcare transition preparation¹; in Texas (where the authors practice medicine) only 17 % receive healthcare transition preparation (https://www.gottransition.org/resource/?state-regional-national-hct-performance-yschn). This likely contributes to an increase in adverse events across disease types in the time following transfer, such as worsening glycemic control in diabetes² and an increase in neuropsychiatric and renal disease activity in systemic lupus erythematosus (SLE)³. Many investigators have proposed interventions aimed at improving transition outcomes and avoiding adverse events following healthcare transfer, such as specific educational materials or utilizing a transition coordinator4, 5. However, no standardized method of healthcare transition preparation exists. Further, while many studies have suggested varying approaches to transition preparation, there is limited evidence supporting which transition interventions are most effective at improving transition outcomes5, 6, 7, 8.

Several conceptual frameworks have been proposed with respect to transition success suggesting essential factors to account for when developing transition programs and measuring successful transition. These include factors directly measuring success (ranging from disease-specific metrics to cost to patient satisfaction) as well as elements presumed to drive successful transition, such as patient self-management. One global attempt to create consensus on transition success surveyed healthcare transition experts to define key pieces of transition success⁹. In the end, eight indicators were included as features of transition success: the patient was not lost to follow-up, the patient attended all scheduled visits in adult care, including the first visit no later than 3–6 months later, the patient built a trusting relationship with an adult provider, self-management by the patient, avoidance of emergency department (ED) visits for regular care, patient (and family) satisfaction with transition, and maintenance of or improvement in disease control. Another study surveyed an interdisciplinary group of primarily U.S. experts and identified ten features to consider for successful healthcare transition¹⁰. They divided them into three buckets including individual (quality of life, knowledge of disease conditions and complications, knowledge of and adherence to medications, self-management, and understanding health insurance), health service (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and social (having a social network) outcomes. Efforts have also been made to assess the parent/caregiver perspective on transition outcomes. One survey conducted in the U.S. identified medication adherence as the highest of 13 most important outcomes. This study also notably eliminated from importance outcomes related to autonomy; thus, the conclusions were likely influenced by the demographics of the patient cohort (predominantly white, insured individuals with mild to significant cognitive delays)¹¹.

Other reports have comprehensively reviewed the literature for what has already been reported in healthcare transition outcomes. One study endeavored to apply the “triple aim” of the Institute for Health Care Improvement (improve the individual experience, improve the health of populations, and reduce per capita costs) to the published literature on healthcare transition⁸. These investigators found that most publications examined population health (many including patient-reported outcome measures and disease-specific measures), but fewer evaluated cost and even less looked at the individual experience (most commonly through satisfaction surveys), and all with limited consistency across studies regarding each outcome. Another study performed an integrative review of the published literature for transition outcomes and found that clinic attendance, hospitalization rates, patient satisfaction, and various disease-specific measures were the most commonly evaluated factors, but, again, with little uniformity⁷. Another systematic review categorized quality indicators in healthcare transition within the literature¹². Only a subset of quality indicators corresponded to outcomes, and most lacked instructions for implementation. Lastly, a recent comprehensive review detailing transition outcome measures (grouped across 10 categories ranging from healthcare utilization to cost to quality of life to clinical outcomes) highlighted a lack of standardization in measurement and the absence of a universal score⁵.

Without a simple way to define transition success, it is difficult to assess if interventions improve the structure and processes of a given transition program, or the subsequent outcomes. Though a number of publications have objectively evaluated various transition outcomes mentioned above, few reports have moved beyond viewing features of transition success in isolation, but, instead, as part of an overall assessment of healthcare transition success. At our institution, we have worked over the last nine years to create a transition pathway that includes the Six Core Elements of Transition™¹³. Most critically, beginning at age 14, planning is conducted using the Transition Planning Tool¹⁴ and patient self-reported readiness is assessed with the Adolescent Assessment of Preparation for Transition survey¹⁵ (Supplemental Figure). Over this time, we have automated our processes and integrated transition as much as possible within the regular clinical workflow¹⁶. However, due to the lack of accepted measurements of transition success, we are unable to quantify any success of our transition program or score additional future interventions for impact on outcomes. To move from frameworks to practically measurable outcomes requires a narrowing of focus, including consideration of disease- or at least specialty-specific features.

The goal of this study was the creation of a novel transition success score for patients who have transitioned from pediatric to adult care within the field of rheumatology. Throughout, we will use the term transition to refer to the process, often spanning years, of preparing adolescents to become increasingly independent and ultimately navigate the adult healthcare system, and transfer to the narrower timeframe during which a patient establishes care with a new adult provider. We have assessed the success of patients that transferred out of our pediatric clinic during the development of our transition program using our novel score.

2. Methods

2.1. Creation of the success score

At our institution, the entire division of rheumatology engages in healthcare transition by actively working on transition planning and readiness with patients, generating transition summary letters, and by participating in the transfer of patients to adult providers (Supplemental Figure). Development and implementation of transition-related quality improvement initiatives and assessment of their impact is the purview of a nucleus of self-selected, multidisciplinary transition team members that, at any given time, will include a combination of rheumatologists, nurse practitioners, fellows, residents, clinic nurses, social workers and medical students. All transition team activities and initiatives are discussed and agreed upon during regular meetings that include the entire division of rheumatology.

To begin to create a transition success score, features of transition success were identified in the medical literature by the transition team. This multidisciplinary team, including a medicine-pediatrics dual trained rheumatologist (TPV), has experience in transfer of patients with childhood-onset rheumatic disease to adult rheumatology care and selected features felt to best represent pure measures of transition outcomes (versus important features of transition planning and readiness) most relevant to rheumatic diseases. Across 5 years (2020–2025) during serial transition-focused division meetings, all pediatric rheumatology providers at our institution [physicians (16, including authors MGT and TPV), fellows (16), nurse practitioners (2), nurses (7), and social workers (3)] were involved in the development and refinement of the scoring system. Selection was influenced by previous experiences with failed transfers of care. Advice was provided by adolescent medicine colleagues (physician, psychologist, and research staff) with expertise in healthcare transition who meet quarterly with the division of rheumatology. After serial discussions, an initial consensus on the top transition outcomes was formed in 2021 and further refined until the ultimate components of the transition score were finalized in early 2025.

2.2. Identification of transitioned patients

Inclusion criteria for the study were pediatric rheumatology care provided in our clinic, transfer to adult care with a new provider during the study period, and accessible adult clinical data via the EMR. We have a medicine-pediatrics dual trained rheumatologist in our clinic, providing the opportunity for our pediatric providers to transition patients with rare genetic inflammatory disorders and/or developmental delays “internally”. For the first two years following the inception of our transition program, we focused on identification of the internally transferred patients who moved from pediatric care with one of our pediatric providers to adult care with our dual trained rheumatologist. Notably, patients that followed with our dual trained rheumatologist as pediatric patients and continued to follow with her as adults did not meet inclusion criteria for the study, because they did not transfer to a new adult provider during the study period. In year three, we began to encourage all providers to share patients preparing for transfer to adult care with the transition team. Clinic nurses and social workers, who often work very closely with providers on transition, were also encouraged to share which patients were transferring. In year seven, we added a component to the transition pathway. We began sending weekly emails to providers with an EMR-generated list of patients aged 14 years and older with appointments in the next week in order to prompt providers to engage in conversations about transition. Subsequently, these auto-generated lists were used to manually screen all patients aged 17 years and older for those who had transferred care, increasing capture of transferred patients. Identified patients who had a final pediatric rheumatology appointment prior to the time data analysis ended (mid-year eight) met inclusion criteria.

2.3. Scoring of patients

Patients were scored for transition success following retrospective EMR review of all identified patients. Records obtained via our institutional EMR system and any connected health systems were reviewed to obtain demographic information and to score each patient for each component of transition success. Each component was scored as binary (ie, yes or no) based on meeting or not meeting that component. If records from an adult rheumatology provider were not available through EMR review, the patient was unable to be scored. However, if the pediatric provider indicated that a patient was transferring to an adult rheumatologist with a shared EMR, and no additional encounters were visible, it was assumed that the patient did not successfully transition.

2.4. Transition score

Ultimately four components were chosen for the transition success score. We attempted to balance a comprehensive assessment of success with the creation of a score simple enough to be practical. Component 1 is attending the first adult rheumatology appointment in the time frame designated by the pediatric rheumatologist. In the few instances this timeframe was not directly specified by the pediatric rheumatologist, it was inferred based on the cadence of time between appointments prior to transfer. Component 2 is refilling medications with the new adult provider within 3 months of the first adult appointment. The few patients who transitioned while not taking medications were scored successfully for component 2. We counted this component as successful if the adult provider prescribed any rheumatologic medication within the 3 month time frame, although we recognize some patients are on infusion medications that are given less frequently. Of note, we considered each component independently, meaning that a patient can be unsuccessful for component 1 (such as by not attending their first adult appointment for 2 years after their last pediatric rheumatology appointment), but still be successful for component 2 if, at that appointment, the adult provider prescribes their hydroxychloroquine. In this way we did not doubly penalize a patient that was late to their first appointment, but otherwise engaged with adult healthcare. Component 3 is having no rheumatology-related ED visits or hospitalizations in the first year after transition. If a patient was admitted for a scheduled surgery or, for example, went to the ED for a broken bone following an accident, such events were not counted as rheumatology-related visits. However, arthritis or nephritis flares, for example, were scored. Of note, this component was scored qualitatively (ie, one or more than one rheumatology-related ED visit or admission were counted equally). Component 4 is attending a second adult rheumatology appointment. We did not set a specific time frame for meeting component 4. It was decided to weigh each component equally at 25 % of the total score, and the goal of optimal transition success, or a score of 100 % (achievement of 4 out of 4 components) was set.

In this retrospective analysis, we were unable to assess patient (or caregiver) satisfaction with transition or trust in the new adult provider, although these have been suggested as key features of successful transition⁹. We believe that patient planning and readiness are of the utmost importance in a transition program, however we did not include features reflective of these elements in our score. Planning¹⁴ and readiness, including patient self-reported readiness surveys¹⁵, are included as key elements in our transition program (Supplemental Figure) to prepare patients prior to transfer to adult care¹³, as we expect best outcomes will be obtained if planning and readiness are optimized prior to transfer. We considered disease-specific transition outcomes, but ultimately did not include any considering the difficulty of encompassing the wide spectrum of diagnoses among patients transitioning from pediatric rheumatology clinic, and our desire for a simple, easy to calculate score. Instead, we have highlighted in our transition program that transfer of care should be optimally timed for periods of low disease activity whenever possible. We also consider lack of ED visits (component 3) a rough indication of disease control across multiple conditions.

3. Results

3.1. Patient cohort

In the nine years since the initiation of our transition program, 357 patients were identified as having a final pediatric rheumatology appointment. Providers directly communicated the transfer of 301 (84 %) and 56 (16 %) were identified via manual review of a weekly list of transition aged patients generated to use to prompt transition planning among clinic providers. During the first two years of the transition program, 25 patients transferred internally to a dual medicine-pediatrics trained rheumatologist. The number of transferred patients identified annually increased after starting manual review of transition aged patients in year seven, indicating that transferred patients were likely missed during the years in which direct provider notification was the only means of identification. For example, in 2022 (the year prior to beginning the manual review), 50 total transferred patients were identified, and in 2023 (we began manually identifying patients in February 2023), 102 total patients were identified, 37 of which were identified only via manual review.

Of the 357 identified patients that transferred care, 198 (55 %) were able to be fully scored for transition success. For the 159 patients unable to be fully scored, the most common reason for exclusion was the inability to see records in the EMR (87 patients, 55 %). The second most common reason was insufficient time between their last pediatric appointment and the end of data collection (65 patients, 41 %), due to requiring, by our own definition, a year after the last pediatric appointment to lapse in order to score component 3 (no rheumatology-related ED visits or hospitalizations in the first year after transition). Six patients (4 %) were excluded due to another service managing their condition after transfer (eg, adult dermatology managing hidradenitis suppurativa) and 1 (0.6 %) was initially identified as transferring to an adult provider, but then resumed care in pediatric rheumatology clinic.

Table: 1.

Transition Cohort, Demographics for 198 patients scored for transition success. Information was extracted from the electronic medical record by retrospective review.

	Median (IQR)
Age at Last Pediatric Visit (years)	18 (18,19)
Time Since Last Pediatric Visit (years)	3.3 (2,4.6)
Time to First Adult Visit (months)*	3 (2,6)
	# (%)
Diagnosis Category
Juvenile Idiopathic Arthritis	68 (34)
Systemic Lupus Erythematosus	84 (42)
Other	46 (23)
Insurance^
Private	95 (48)
Public	93 (47)
None	7 (3.5)
Both	3 (1.5)
Location of Transition
Internal (dual trained provider)	31 (16)
Private	110 (56)
Local County Hospital System	52 (26)
Other Public Clinic	5 (2.5)

*for n = 173 patients attending an adult visit

^insurance = type carried at time of final pediatric visit

Demographics are in the Table. The median age at the time of the final pediatric appointment for the 198 patients scored for transition success was 18 years (IQR 18,19), range 16–25 years. The patients had juvenile idiopathic arthritis (68/198, 34 %), SLE (84/198, 42 %), or other diagnoses (46/198, 23 %). At the time of their final pediatric rheumatology appointment, 95/198 patients (48 %) had private insurance, 93/198 (47 %) had a version of public insurance, 7/198 patients (3.5 %) had no coverage, and 3/198 (1.5 %) had both private and public insurance.

3.2. Transition timing and location

For the transferred patients that attended any first adult rheumatology appointment (n = 173), the median time between their final pediatric appointment and their first adult rheumatology appointment was 3 months (IQR 2,6). Cumulatively, 31/198 (16 %) transferred internally (to our dual trained rheumatologist), 110/196 (56 %) transferred to a private clinic (including those staffed by academic faculty), and 57/198 (29 %) transferred to public clinics (within our government-funded, safety net hospital system). At the time of data analysis, among patients scored for transition success the median number of years since the final pediatric rheumatology appointment was 3.3 (IQR 2,4.6).

3.3. Component 1

Of the 198 scored patients, 113 (57 %) made it to the first adult rheumatology appointment within the timeline recommendation by the pediatric rheumatology provider (Fig. 1, component 1). In total, 173/198 (87 %) patients did eventually attend a first adult rheumatology appointment during the time span data was analyzed, but credit for component 1 was only given if the appointment was attended in the timeframe specified by the pediatric rheumatologist in their final documentation. The longest span of time between the final pediatric visit and the first adult was noted to be 41 months.

Fig. 1.

Transition success of 198 patients by component. Component 1, attending the first adult rheumatology appointment within the timespan recommendation by the pediatric rheumatology provider, was met 57 % of the time. Component 2, a medication refill by the adult provider within three months of the first adult appointment, was met by 76 % of patients. No rheumatology-related emergency department visits or hospitalizations, component 3, was met by 83 % of patients. Component 4, attendance at a second adult appointment was met by 80 % of patients.

3.4. Component 2

Component 2 was achieved by 150/198 (76 %) patients (Fig. 1). Medication refills were provided by the new adult rheumatology provider within 3 months of the first adult visit for 137 patients, and another 13 patients transferred while off all rheumatology-related therapeutics.

3.5. Component 3

Only 33/198 (17 %) patients had an ED visit or hospital admission for a rheumatology-related reason in the first year following the final pediatric clinic appointment, meaning that 165/198 (83 %) patients achieved component 3 (Fig. 1). A handful of patients were seen in the ED or admitted for various non-rheumatic reasons including appendicitis and childbirth, but such events were not counted against transition success.

3.6. Component 4

Our transition program has been in development for over nine years, providing for up to 8 years of follow-up for the earliest patients transferred to adult rheumatology care. Across all follow-up, 159/198 (80 %) patients attended a second adult rheumatology appointment (Fig. 1). There were 15 patients who attended an initial adult rheumatology appointment, but never a second. Review of component 1 and 4 data can appear incongruent, without recalling that component 1 is not absolute and only achieved if the first visit is attended in the recommended time frame.

3.7. Transition success scores

Optimal transition success (4/4 components, 100 %) was achieved by 72/198 patients (36 %) and 77/198 patients (39 %) scored 75 %, or met 3 of the 4 components (Fig. 2). Half of the 4 components, or a score of 50 %, was achieved by 22/198 (11 %) patients. The 24/198 (12 %) patients who scored 25 %, or met 1 of the 4 components, were all given credit simply for not having a rheumatology-related ED visit or hospitalization in the year following the final pediatric rheumatology visit—meaning no patients that attained only one component attended any adult appointment at all or refilled medication properly. Fortunately, only 3/198 (1.5 %) patients met 0 of the 4 components.

Fig. 2.

Proportions of patients (n = 198) with each transition score. The optimal score of 100 % was achieved by meeting all four components of transition success, with each component weighted equally at 25 %.

4. Discussion

We have created a novel score for transition success of pediatric rheumatology patients. This work fills a gap, as adverse events are associated with poor transition outcomes in our specialty3, 17, 18, 19, and transition programs need to be developed in which interventions can be tested for the ability to improve transition success. In addition to the creation of a novel scoring system, the second purpose of this study was to score transition success of a cohort of patients. We found that most patients (75 %) met either 3 or 4 of the 4 transition success components (75–100 %). Despite this, we also determined that 20 % did not ever make it to a second adult rheumatology appointment. Further, even though 12 % scored 25 % success (1 out of 4 components), it turns out that this was only because they avoided a rheumatology-related ED visit, which is a low bar more reflective of failure than any real success. These findings indicate that there remains considerable room for improvement in transition outcomes among patients transferring care out of our clinic.

Few reports in the literature have proposed healthcare transition metrics, even fewer have scored patient cohorts for transition success, and to our knowledge, none have subsequently used a transition score to tailor changes or refine a transition program. In recent efforts, investigators developed a 10-question transition success score in inflammatory bowel disease (IBD)²⁰. However, it is a mixture of what we consider transition outcomes, like attending adult appointments in the recommended time frames and patient satisfaction with transition, and transition readiness, like the ability to recall medication doses and perform independent communication with providers. The National Alliance of Sickle Cell Centers recently developed a consensus of recommendations for transition of patients with sickle cell disease from pediatric to adult centers²¹. This initiative included standards for successful transition—two visits with an adult sickle cell program in the first year after transfer, completion of at least 50 % of scheduled outpatient visits with the adult center in the five years following transfer, and recognition by the patient that the adult center is the medical home—without yet applying the score to individual patients, but with plans to study future interventions with respect to how they impact these outcomes. One study of adolescents living with HIV in Ethiopia both created a metric for transition success—attending each adult visit for 12 months post-transfer and maintaining a viral load < 1000 for 6–12 months—and determined that 68 % of patients successfully transitioned, with age > 18 years, being on anti-retroviral therapy for more than two years, and living within the city predicting transition success²². In the field of rheumatology, prior transition success scores are limited to a study with a single parameter involving attending an adult appointment within a year of the final pediatric visit²³, another with three metrics related to adult visits, but scored within a unique hybrid SLE-only clinic where pediatric providers continue to follow the patients²⁴, and a third report in which the investigators evaluated correlates of successful transition between patients who did and did not transition successfully, but in which the metric for successful transition was not defined²⁵.

Our score includes components of various frameworks that have been suggested or features previously used to measure transition success5, 7, 8, 9, 10, 12. To remain simple and easy to calculate, all factors could not be included. We did not include components such as comprehension of medical conditions and complications, knowledge and adherence to medications, and understanding of access to health insurance. We agree that these components are critical and that successful healthcare transition is unlikely in their absence. However, we believe that assessing these parameters after transfer of care is too late and have chosen to include these features in the transition planning and readiness elements of our transition program (Supplemental Figure). Now that we have identified a score for transition success, we hope in future work to identify correlations between features of planning and readiness and future successful transition.

We also acknowledge that our score, calculated retrospectively, lacks patient perspective. This is a limitation of our study as, even if patients attend appointments and avoid hospitalizations, if they are dissatisfied with their transfer of care and transition completion, it would be hard to consider it a success. Our future work includes obtaining consent from patients transitioning from our pediatric rheumatology clinic and contacting them one year after transfer to determine their satisfaction with transition (and assess/confirm their transition success score). The information to be gained from this future work could lead to a revision of our transition success score that accounts for the patient perspective that is currently missing.

Additional limitations of our study include that it is from a single, albeit large, U.S. center, which could limit applicability to other locations. Despite multiple ways of identifying patients, we surely missed patients who transferred to adult care prior to our ability to perform manual evaluation of all transition age patients. We were also limited in the number of patients for whom electronic records were easily tracked. Essentially, we could not track those who transferred care to private clinics without our shared EMR (although all local adult academic rheumatology clinics could be evaluated), including we could only see ED visits/hospitalizations visible via the shared EMR. This may have skewed our data. An additional limitation of our score is that if a patient were on only an infusion medication that is given at a cadence of 3 months or greater (such as rituximab), they may not be scored as meeting component 2, even if their adult provider prescribed their next infusion medication. We also recognize that wait times for adult appointments can be lengthy, which could affect the achievement of component 1. However, in general, most of our pediatric rheumatologists will encourage patients to schedule the first appointment with an adult provider, then continue to see the patient until that appointment to prevent lapses. Lastly, an unanticipated consequence of the design of our score is that patients who never went to an adult appointment at all can have a score greater than 0 if they do not have an emergency department visit in the first year after the last pediatric appointment. In our cohort, 24 patients scored 25 % solely due to not having an emergency department visit despite never attending an adult appointment. This finding could lead to future revisions in the score.

With acknowledgement of these limitations, we do believe our transition success score could be broadly applicable. Due to the wide breadth of conditions seen in rheumatology clinic (from systemic lupus erythematosus to juvenile arthritis to vasculitis to periodic fever syndromes and beyond), we did not include any disease-specific metrics in our success score in order to be able to apply the score to all patients in our own clinic. Though this will be considered a limitation by some, it can also be considered a strength with respect to applicability across all conditions. Our score could be applied not only to other pediatric rheumatology practices, but we also believe it could be applied to patients with chronic health conditions from other specialty clinics as well if medications are used for the treatment of those conditions, given component 2 (eg, inflammatory bowel disease, sickle cells disease, cystic fibrosis, diabetes, transplantation).

As mentioned above, our future plans include working to incorporate patient perspective into our evaluations of transition success, which may also allow us to capture data from a larger proportion of transitioned patients (eg, those who transfer to private clinics not linked to our EMR). While conducting this study, we also recognized how much our transition pathway could benefit from a real-time, formal standardized operating procedure (SOP) regarding assessment of the final elements of transfer of care and transition completion (not retrospectively, as we did for this project). This SOP is under development, but includes specific tasks (eg, confirm that an adult rheumatology appointment has been scheduled, provide a transition summary letter), assigned to specific providers (eg, rheumatologists, clinic nurses, social worker) to be completed in designated time frames (eg, prior to the final pediatric appointment, at the time of the final appointment, following the final appointment). We hope to identify poor transition earlier and institute procedures to help correct it.

The median follow-up time for the patients in our study was 3.3 years, but some have suggested that even longer outcomes should be assessed⁷; for example, there is some evidence that no-shows to adult appointments can accelerate even more than three years post-transfer of care²⁶. Because of the length of time over which we evaluated this cohort (some of the earliest patients transferred up to 8 years prior), we did recognize that there were patients who fulfilled all 4 components of success and scored 100 %, who later stopped regularly seeing their adult provider. Therefore, we are interested in further exploring a long-term transition success score.

However, we are most excited, now that we have defined which patients in our cohort have transitioned successfully, to work to identify correlates of successful transition among the elements of our transition program such as use of a transition planning tool, self-reported readiness scores, or receipt of a transition summary. If our future hypothesis-driven work can identify components that improve transition outcomes, we will refine our pathway to enhance these aspects. Our ultimate goal remains the creation of a successful and sustainable bridge between pediatric and adult rheumatology care through standardization of the way rheumatology providers help pediatric patients prepare for and enter the adult healthcare system.

5. Conclusion

In this study, we created a novel transition success score for pediatric rheumatology patients that transfer to adult rheumatology care. We utilized this scoring system in our historical cohort of patients and determined that optimal transition success (score of 100 %, or 4 out of 4 components) occurred in just over a third of patients, leaving ample room for improvement in transition outcomes within our pathway. Now that we have created a possible measure of transition success, we hope in future work to identify targetable elements of the transition process that can be altered to improve transition.

CRediT authorship contribution statement

Tiphanie P. Vogel: Writing – review & editing, Supervision, Funding acquisition, Formal analysis, Data curation, Conceptualization. Miriah Gillispie-Taylor: Writing – review & editing, Formal analysis, Conceptualization. David McDonald: Writing – review & editing, Data curation. Kyla Blasingame: Writing – review & editing, Writing – original draft, Funding acquisition, Formal analysis, Data curation.

Ethics

The work we describe here has not previously been published except in the form of an abstract for the American College of Rheumatology annual meeting (October 2025). All authors contributed meaningfully to this work and have approved the manuscript. This article will not be published elsewhere in the same form without written consent of the copyright holder.

Funding

This work was supported by a medical student preceptorship from the Rheumatology Research Foundation to K.B.

Declaration of Competing Interest

The authors have no conflicts of interest relevant to the work in this manuscript.

Appendix A. Supplementary material

Supplementary material

Data availability

Data will be made available on request.