Findings on RQ1 from contextual inquiry

To address RQ1, we completed 19 hours of contextual inquiry at two Geisinger-based transition clinics. A total of 15 clinicians and 16 patients were observed during clinic observations at Geisinger. One clinic was a pediatric cystic fibrosis clinic that provides care and transition preparation for individuals 0–18 years old prior to their transfer to the adult cystic fibrosis clinic. The other was a person-centered, complex-care clinic within the department of General Internal Medicine, providing care for patients of all ages with complex health and social needs due to multiple chronic conditions. Results from the contextual inquiry include descriptions of each clinic’s approach to transition care, two diagrams that map essential elements of each clinic, and one diagram abstracting from each clinic diagram to depict key elements of a successful transition clinic at our institution (Figs. 1, 2 and 3). Common elements included relationship building with patients, care coordination, stepwise transition education for patients and parents, communication between providers, and a sustainable clinic home. These interrelated dimensions are described for each clinic below.

Fig. 1

Cystic fibrosis transition clinic: key elements

Fig. 2

Complex care clinic: key elements

Fig. 3

Generic transition clinic: key elements of both clinics

Cystic fibrosis clinic

For AYA with cystic fibrosis, transition to adult care was facilitated by way of a collaboration between the multidisciplinary pediatric and adult cystic fibrosis clinics (Fig. 1). Quarterly pediatric appointments are one to three hours long and characterized by regular review of condition-specific information and abilities, tailored to patient age and maturity. Careful documentation of patients’ condition-specific knowledge and abilities, regular communication between the clinics, and a warm-hand-off help to ensure a smooth transition from pediatric to adult care. The care-coordinator, along with nurses, address patient needs between appointments.

Transition preparation is divided into six stages. Beginning at age 10, patients are educated about their condition and the transition process. Knowledge expectations increase and parental involvement decreases as the child progresses through the six stages. Each clinician takes responsibility for ensuring that knowledge advances in a stepwise, age-appropriate manner. A checklist is used to track the child’s progress in different domains, with each team member indicating whether a given item (e.g., understands good handwashing and avoiding germs) has been discussed and whether the child’s understanding is “in progress” or “proficient.” Progress in each area is then recorded in the electronic medical record (EMR), where all team members can review it, identify needs between appointments, and plan goals for next appointments.

When the adolescent reaches stage six, generally at age 17, the adult team members come to the pediatric side to meet the patient and family. They evaluate transition readiness and accompany the patient to the adult clinic. Prior to completing the transition to adult care, the pediatric clinicians will send transfer documents to the adult team to communicate patient priorities: one document, called “About Me,” is completed by the patient and specifies patient preferences and concerns; the other document, called, “Adult Transition Summary Sheet” includes patient-specific medical information, such as medical history and current medical plan.‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬

Complex care clinic

For individuals with complex care needs, transition to adult care occurs within one clinic that serves patients of all ages. Clinicians involved and other key dimensions of the clinic are shown in Fig. 2. Transition is tailored to the patient’s needs and abilities, with some patients taking on more responsibilities for their own care than others. The approach is characterized by relationship building within hour long appointments and care coordination to meet patient needs between appointments.

The complex care clinic serves patients with different medical conditions and social and behavioral needs that require varying degrees of support. Thus, there is no uniform approach to patient education, as in the cystic fibrosis clinic. Some patients will never fully take responsibility for their own care due to their underlying medical condition. However, there are certain aspects of transitioning to adult care that happen regardless of a patient’s abilities (e.g., changing insurance when parental insurance is no longer an option). Other transitions are more specific to the patient’s abilities, including issues of guardianship, funding for day programs, and applying for Medicaid waivers to cover in-home care.

The director of the complex care clinic described the case-manager/care coordinator role as indispensable. She connects patients and families to resources in the community and helps them navigate the many disparate pieces required for successful transition to adulthood. However, funding the case-manager role has been challenging. Because the position is funded through the organization’s health plan, the case manager only supports individuals with the health plan. Care-coordination for patients with other insurances falls on the physicians.

Findings on RQ2 from semi-structured interviews

To address RQ2, we analyzed interviews with nine national transition experts guided by the RE-AIM implementation science framework. Demographics are in Table 1. Of the nine transition experts interviewed, three worked at a Geisinger transition clinic and six worked at transition clinics from health systems around the United States. Most interviewees were physicians (8/9) working in primary care (7/8), including pediatrics (4/8) and internal medicine (2/8). Qualitative findings from interviews are organized below according to RE-AIM construct (Tables 2, 3, 4, 5 and 6). Definitions of RE-AIM constructs are based on the analysis by Holtrop et al. [42], which describes qualitative dimensions of each RE-AIM construct (See esp. Table 2 w/in Holtrop et al. 2018).

Table 1 Demographics: expert interviewsTable 2 Clinic observations: clinicians and patients observedTable 3 Reach: key findings with exemplar quotationsTable 4 Effectiveness: key findings with exemplar quotesTable 5 Adoption: key findings with exemplar quotesTable 6 Implementation: key findings with exemplar quotesRE-AIM domains Reach

Interviewees described how they reached patients eligible to participate in the transition clinic (Table 3). Word of mouth from patients, families, and clinicians played an important role in increasing referrals. A few interviewees described having more patients than they could accommodate. Consequently, advertising the clinic was not a priority, but defining their target population with specific inclusion/exclusion criteria was essential for appropriate referrals. To improve ongoing participation in the clinic, some clinics used texting and phone call reminders. One interviewee described dividing current patients based on levels of self-advocacy to prioritize reaching the patients most in need. Education, of both patients and providers, was described as essential for setting expectations about appointment frequency and the level of commitment required for participation in the clinic.

Effectiveness

Interviewees explained which metrics they tracked, how they were tracked, and which outcomes were most meaningful for capturing clinic successes (Table 4). Most interviewees tracked and reported high levels of patient and family satisfaction. One interviewee explained that they track patient satisfaction separately from their institution to learn about dimensions of care that might otherwise be missed, such as emotional connection with a new doctor. Other interviewees described outcomes they found meaningful, but which might not be of interest to their institution. For example, interviewees described feeling proud of their clinic’s success in reducing patient anxiety, reducing workload for referring clinicians, and offering excellent training to residents and medical students.

Adoption

Interviewees described making the case for a transition clinic to their organization, including metrics used and justifications for adopting the proposed clinic (Table 5). Because transition clinics were described as unlikely to generate hospital revenue, interviewees stressed the importance of finding alternative ways to demonstrate clinic value. They described two aspects of clinic value that motivated adoption: economic value and consistency with organizational mission.

To demonstrate the economic value of the clinic, interviewees showed cost savings by pointing to lower emergency room utilization, fewer in-patient admissions, and shorter hospital stays. Several interviewees explained how their clinic increases appointment availability for non-transitioning patients. For instance, the clinic decreases the number of adults seen in pediatrics, which opens appointments for new pediatric patients; and the clinic reduces subspecialty referrals by meeting patient needs within primary care, which improves access to subspecialists for other patients.

Interviewees said that showing compatibility with the hospital’s mission and priorities was another dimension to demonstrating clinic value. For example, one interviewee emphasized the ways their transition clinic serves a vulnerable patient population because their health system values caring for underserved patients. While non-economic arguments were not sufficient for institutional adoption, participants described how they helped.

Implementation

Interviewees discussed the logistics of clinic funding and cost considerations, factors influencing structure and design of the clinic, and clinician roles (Table 6). They explained that providing good transition care is expensive because it requires long appointments and care coordination between appointments. Accordingly, they cannot turn over the same volume of patients as other practices.

Clinic models varied by institution. Some programs were large, multidisciplinary clinics, while others used a consult model with one or very few individuals. Clinician time committed to the program also varied from a few hours per week to full-time roles. Typically, interviewees said programs included some or all of the following clinicians: physicians, nurses, advanced care providers, social workers, and care coordinators.

Most interviewees emphasized the essential role of care coordination by social workers and nurses. They explained that much of the work required to support transition occurs outside of the actual appointment. Interviewees discussed how care coordinators and social workers assisted with intake calls, symptom assessment between appointments, planning for upcoming challenges with patients, coordinating follow-up imaging and labs, vocational counseling, waivers, insurance transitions, and accessing state-based services. One interviewee stressed the importance of having both a care coordinator and a social worker to address social and medical needs between appointments.

Maintenance

Interviewees described economic and non-economic factors that contribute to clinic maintenance (Table 7). A few interviewees explained how their programs used grant funding as proof of concept, but ultimately transitioned to institutional support by showing the value of the clinic. One interviewee said their program was funded in part by the state and the state has sustained this support over time. Other interviewees discussed how their programs relied on partnerships with other organizations or departments for sustainability.

Table 7 Maintenance: key findings with exemplar quotes

Participants also described how clinic design and institutional structure played a role in making the program financially sustainable. For instance, one interviewee said the program exists within a system that uses a value-based, population-health model rather than a relative value units (RVU) model. This enables them to offer longer appointment times and focus on follow-up, care coordination, and quality improvement without the stress of maximizing RVUs. Other interviewees explained how their programs achieved similar sustainability by housing the clinic within a larger department to which they contributed by seeing non-transition-aged patients.

Interviewees also described non-economic reasons that contributed to their clinic’s sustainability. For example, one participant said their clinic is an important part of the neighborhood and serves the hospital’s larger mission of helping communities in need. Another interviewee described how their clinic plays an important role in resident education. A few interviewees said that continued recognition by and communication with leadership was also important for sustaining the clinic.

Barriers to transition care

Interviewees described barriers to providing transition care and maintaining a successful clinic (Table 8). They emphasized insurance as one of the primary barriers to care. In addition to patient challenges navigating the transition to adult insurance, providers experienced challenges to providing equitable care for patients. For instance, two interviewees said it was difficult to connect patients to specialty care because many subspecialists were unwilling to take Medicaid. Another interviewee explained that because there was no funding for an insurance-agnostic case manager/care coordinator, gaps in care-coordination for patients with certain insurances fell to physicians. Several interviewees described the impact on transition care when their state expanded or did not expand Medicaid coverage.

Table 8 Barriers key findings with exemplar quotes

Participants also identified barriers related to workflow. Many processes automated in other contexts were manual in transition clinics. For instance, one interviewee said she was on her third social worker in five years, not because they do not like the program, but because the pediatric hospital system has age limits that undermine the social workers’ ability to care for adults. This affected other specialists in the program too because they had trouble placing orders for adults in an EMR built for children. Another interviewee described how clinicians created processes on a case-by-case basis whenever patients needed inpatient care or imaging because their clinic is outside of the hospital.