A Residency Program Curriculum to Improve Health Care Transitions for Autistic Individuals

Growing evidence highlights the unmet physical and mental health needs of autistic individuals as they transition into adolescence and early adulthood.^1,2  Nationally, health systems have not successfully scaled health care transition services, particularly for autistic individuals.³  Despite the growing evidence of its importance, a recent study showed less than 20% of youth receive transition planning support.⁴  Among youth with special health care needs (YSHCN), autistic youth are half as likely to receive transition services compared with non-autistic youth.⁵ 

Provider knowledge, particularly among adult providers, has been identified as an important barrier in improving health care transitions (HCT) and access among autistic adults.^6,7  Research finds that graduate medical trainees feel unprepared to address transition issues with their patients with chronic diseases.⁸  While health care systems might not be set up to facilitate optimal transitions of care, increased exposure to and training in caring for patients in the transitional age group predicts higher self-reported confidence among trainees.⁸  Although educational resources have been developed for resident trainees by multiple professional medical organizations, and educational goals and objectives for the topic of HCT have been published,^9,10  there continues to be a discrepancy between recommendations from guidelines and resident practice. Taken together, previous research underscores a gap in physician training in HCT for autistic individuals and YSHCN, likely stemming from a larger gap that exists for HCT training in general.^6,11 

Physicians dually trained in medicine and pediatrics care for patients across the age spectrum and are in a unique position of enhancing the transition experience for their patients. In the current study, we aimed to understand the experiences of medicine-pediatrics program directors participating in a learning collaborative focused on developing HCT curricula for their resident trainees. In particular, we wanted to determine perceived versus experienced facilitators and barriers in curriculum implementation during the collaborative. Findings from this study could help identify opportunities in improving physician training during graduate medical education on the topic of HCT in autistic individuals.

The study was designed as a prospective cohort study to understand program director experiences before and after participation in a quality improvement learning collaborative described below. The Health Care Transition Residency Curriculum Collaborative Improvement Network (HCT-CoIN) was a national quality improvement learning collaborative over 9 months (June 2018–February 2019), adapted from the Institute for Healthcare Improvement’s Breakthrough Series model.¹²  The purpose of the HCT-CoIN was to create a toolbox of resources for medicine-pediatrics residency program directors to implement or enhance HCT curricula at their own institutions. Participation in the network was open to all program directors who are members of the Medicine Pediatrics Program Directors Association and participants were provided an incentive of $1000.

Program directors from 19 medicine-pediatrics residency programs across the country (Table 1) participated in the collaborative and were included in the study. Most worked on developing or enhancing a transition-based curriculum, while some worked on developing or enhancing tools to be used for evaluating residents in HCT. Program directors met monthly to present their improvement projects and discuss lessons learned and next steps. One program director withdrew after 4 months of participation; the remaining 18 completed the collaborative.

We conducted telephone interviews with all program directors at baseline and after completion of the collaborative. Questions at baseline aimed at understanding the intent behind implementing a transition curriculum, individual program goals, and facilitators and barriers in creating a transition curriculum. Questions at follow-up aimed at understanding how successful program directors were in implementing HCT curricula, whether and how they achieved their goals, and experienced facilitators and barriers.

The qualitative coding scheme (Tables 2 and 3) was developed to capture recurring responses within a set of 4 themes: 1) intent behind curricular development, 2) program goals during the collaborative, 3) facilitators, and 4) barriers. All interviews were coded utilizing Dedoose coding software. To obtain interrater reliability a second coder coded 10% of the transcripts at each data collection period and achieved at least 80% interrater agreement on each code.

The host institution and all programs received exemption from their individual institutional review boards before participation in the collaborative.

There were 18 of the 19 program directors who completed the baseline interview and 17 of the 18 programs who completed the follow-up interview. The participating program characteristics are outlined in Table 1.

Program directors wanted to implement HCT curricula because they understood the importance of transition planning in the overall care of patients (39%) but recognized their health systems’ inadequacies in addressing transitions (50%) (Table 2). A program director stated “…there’s not a lot of physicians who have been trained in these areas.” About a third of the programs (28%) did not have any transition curriculum at the time of the baseline interview.

Most program directors at baseline (67%) planned on developing a clinical experience-based curriculum, and 53% of program directors at follow-up were successful in doing so. More than half (56%) of program directors planned to adopt a didactic-based curriculum at baseline; 65% reported successful adoption at follow-up (Tables 2 and 3). Seventeen percent of programs planned on developing clinic-based tools and protocols for transition; more than twice the number of programs were successful in doing so by the end of the collaborative (35%), citing “…utilizing a checklist tool will be helpful…”. Similarly, 11% planned on using the electronic health record as a curricular tool and 29% were able to develop these, noting “…biggest change was making dot phrases to put in EPIC (electronic health record system) …” Although not initially reported as goals at baseline, several program directors cited the ability of faculty to work on transition projects outside of the residency curriculum (24%), and collaboration with subspecialties to deliver the curriculum (24%) at follow-up.

All program directors reported that they met their goals at least partially (6 programs met all short-term goals while 11 programs partly met their short-term goals). The majority (53%) felt they would be able to sustain changes that were adopted during the collaborative.

At baseline, program directors felt that leadership and faculty support and faculty and staff capacity would be the biggest facilitators in curriculum development (50% and 33% respectively) (Tables 2 and 3). At follow-up, program directors stated actively involving residents in the curricular development process served as an important facilitator (65%), in addition to faculty support (53%), reporting “…residents enjoy and are on same page in terms of curriculum…”.

Barriers identified at baseline by program directors also held true at follow-up: competing priorities of faculty and staff (67% at baseline, 71% at follow-up) and insufficient number of trained faculty in transitional care (28% at baseline, 18% at follow-up) (Tables 2 and 3). Another important barrier identified at follow-up was competing learning priorities for residents (53%): “…finding time to get things done, everyone is always pulled in different directions in terms of scheduling…” An unanticipated finding on follow-up was the fact that patients ready for transition care were not readily identifiable among the scheduled clinic patients (29%). System-based barriers, such as lack of leadership support and insurance difficulties, were less common among programs at follow-up (12% each).

The transition into adulthood is a vulnerable period, as well as an opportunity to promote lifelong physical and mental health for emerging adults, that requires strategic coordination of services.¹³  Disparities during this transition are higher for YSHCN, but particularly for autistic individuals.^4,5  A knowledge gap exists among providers, particularly adult providers caring for autistic individuals,^6,7  and enhancing graduate medical education learning experiences in HCT in a diverse patient population could help fill this gap. Developing a curriculum can improve the confidence among resident trainees in addressing transitions of care among peers and families alike.^8,14  Ours is the first study to investigate program directors’ perspectives while adopting transition curricula in medicine-pediatrics residency training programs during a national learning collaborative.

Similar to prior studies,⁹  program directors in the study highlighted health system inadequacies in addressing transitions into adulthood. Despite this, all programs were successful in meeting and progressing in their goals of developing a transition curriculum during the collaborative. The finding is a testimony to the strength of learning collaboratives and the impact of using a quality improvement framework in curricular development.¹² 

Resident trainees appreciate having diverse modalities of HCT curricula.¹⁵  Our study found didactic- and clinical experience-based learning were most popular while delivering HCT curricula. Other modalities which were used included online modules, the electronic health record system, and clinic protocols. Our study was therefore able to attest to the feasibility and acceptability of using diverse educational platforms and strategies for graduate medical trainees, as recommended by the Transitions Clinical Report Authoring Group.⁹ 

Program directors leveraged resident participation in HCT curricular development, alongside faculty support, and found these to be major facilitators. These might be particularly important when health systems lack dedicated staff, faculty, and infrastructure to deliver optimal transition care. However, while resident trainees were major facilitators, they posed a barrier because of their busy schedule and competing learning priorities. Therefore, transition curricula should be incorporated in existing clinical experiences.⁹ 

While our study focused on understanding perspectives around HCT curricula implementation and improvement in general, there are some key takeaways that could benefit physician educators focused on improving health outcomes for autistic individuals. Because the health care transition experience for autistic individuals varies across the country, educators could use an iterative process of a quality improvement framework and include resident trainee perspectives during curriculum development in addressing contemporary health problems relevant to their patient populations. In addition, if lack of patient diversity during residency training impedes learning, results from this study highlight that online modules and simulation cases of autistic individuals can be successfully incorporated into HCT curricula.

There were a few limitations to the study. The baseline surveys were conducted by multiple study team members, which could have introduced some bias in how questions were asked. None of the interviews were recorded and, therefore, notes taken during the interview could not be verified at a later time. Our sample consisted of mainly academic centers and, therefore, does not necessarily reflect the state of transition curricula across different program settings.

In reducing the physical and mental health fallout that occurs during the transition to adulthood, it is important to train health care providers to adequately care for transitional-age youth, particularly for autistic youth with special health care needs. A quality improvement framework provides program directors structure in developing HCT curricula even within suboptimal health care settings. Existing clinical experiences and diverse learning modalities should be leveraged to deliver HCT curricula. Resident trainees should be actively engaged in the curriculum development process.

We thank the Medicine Pediatrics Program Director Association and all the programs and program directors who participated in the Health Care Transition Residency Curriculum Collaborative Improvement Network Transition Research.

HCT

health care transition/s

HCT-CoIN

Health Care Transition Residency Curriculum Collaborative Improvement Network

YSHCN

youth with special health care needs