Abstract

Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after patients were seen in clinic. Although many PCPs found the clinic and resources useful, individual and systemic barriers often prohibited them from participating in transition planning for this patient population. These findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.

The transition from pediatric to adult healthcare is a complex process that is receiving increasing interest by the medical community, including developmental-behavioral pediatricians. An objective of the Healthy People 2020 goals was to increase the percentage of youth with special healthcare needs who converse with their primary care provider (PCP) about transition planning from 41% to 45% (Department of Health and Human Services, 2010). To help with this goal, Got Transition/Center for Healthcare Transition Improvement (a partnership between the National Alliance to Advance Adolescent Health and the Maternal Child Health Bureau) was created to help establish best practice guidelines around transition (The National Alliance to Advance Adolescent Health, 2014). These guidelines included six core elements of transition: Transition Policy, Transition Tracking and Monitoring, Transition Readiness, Transition Planning, Transfer of Care, and Transfer Completion (White, McManus, McAllister, & Cooley, 2012). The American Academy of Pediatrics, the American Academy of Family Physicians and the American College of Physicians also produced a joint clinical report outlining these key steps to aid transition (Cooley & Sagerman, 2011). Implementing these guidelines in large primary care practices has been shown to be feasible in five large pediatric and adult academic health centers in the District of Columbia (McManus et al., 2015).

Youth with intellectual and developmental disabilities (IDD) are in particular need of successful transition, as they have unique healthcare needs when compared to the general population. They are more likely to have comorbid conditions, such as dysphagia, chronic constipation, osteoporosis, hearing impairment, visual impairment, epilepsy, gastro-esophageal reflux, thyroid dysfunction, and psychiatric concerns (Coppus, 2013; Hermans & Evenhuis, 2014; Wee et al., 2013). This group of individuals is more likely to be treated with multiple medications including psychotropic agents, although is less likely to have a psychiatrist managing their psychopharmacologic medications. One study found only 24% of adults with IDD who are on psychotropic medications had received psychiatric consultation (Lewis, Lewis, Leake, King, & Lindemann, 2002). Models of care for transition planning for youth with IDD have been at the forefront of national society meetings (Dietz & Armstrong-Brine, 2015).

Despite the increased interest and need for transition, only 41% of youth with special health care needs receive transition planning (McManus et al., 2013). Adolescents and adults who have IDD were even less likely to receive transition planning (Cheak-Zamora, Yang, Farmer, & Clark, 2013; Jensen & Davis, 2013; Kuhlthau et al., 2016; McManus et al., 2013; Roux, Shattuck, Rast, Rava, & Anderson, 2015), which may lead to disparities in preventative care (Lewis et al., 2002), such as cervical and breast cancer screening with only 34% receiving cervical and 42% receiving breast cancer screenings in one study (Cobigo et al., 2013). The lack of needed supports could potentially be considered reflective of the absence of medical homes for adults with IDD and a failure in the transition process.

Barriers to transition in this patient population have previously been documented. These barriers include (a) the amount of time required for adult providers to manage complex patients in clinic (Okumura et al., 2010; Peter, Forke, Ginsburg, & Schwarz, 2009), (b) the lack of reimbursement for the increased time spent (Okumura et al., 2010; Peter et al., 2009; Scal, Evans, Blozis, Okinow, & Blum, 1999), (c) poor knowledge and lack of training about IDD in adult providers (Bruder, Kerins, Mazzarella, Sims, & Stein, 2012; Okumura et al., 2010; Peter et al., 2009; Pickler, Kellar-Guenther, & Goldson, 2010; Scal et al., 1999), (d) the amount of care coordination beyond just medical concerns (Okumura et al., 2010; Scal et al., 1999), (e) lack of adult providers who will accept patients with IDD (Okumura et al., 2010; Pickler et al., 2010; Scal et al., 1999), (f) poorly coordinated transfer of care (Okumura et al., 2010; Peter et al., 2009), and (g) families and patients not wanting to leave the pediatric setting (Pickler et al., 2010).

Barriers to engaging in the transition process include difficulties around care coordination, poorly coordinated transfer of care, and hesitancy from families and providers to transfer care. A specialty transition clinic potentially can assist to break down these barriers in the following ways: (a) maintain current and important transition resources, (b) provide a streamlined process for coordinating transfers of care, and (c) create dedicated time for discussion and support pertaining to the transition process that is very difficult to achieve in the primary care setting.

The purpose of this article is to share the results that evaluate a demonstration project intended to enhance the use of transition resources by PCPs for youth with IDD. We initiated a quality improvement project based on best practice guidelines outlined by Got Transition. The aims were to assess and improve the utility of a specialty transition clinic and its resources for PCPs. In so doing, we wanted to improve how PCPs engage in the transition process after receiving consultation and resources provided by a specialty transition clinic. We also sought to assess how to optimize the processes of a transition clinic, including improving clinic attendance.

Transition Clinic

The authors piloted the Transition Clinic project from June 2014 through November 2015. The clinic took place one half-day a month for a total of 18 clinics. At the clinic, the adolescents or young adults and families met for 1 hour with a Developmental-Behavioral Pediatric Fellow under the supervision of an attending physician with expertise in transition. Families subsequently met with a transition navigator for a second hour. Three people filled the role of transition navigator at various stages of the clinic and included a licensed clinical social worker, a transition consultant who is also on the Executive Cabinet Team of Got Transition, and a representative from Family Voices (a non-profit organization that provides support to families of children with special healthcare needs). The role of the transition navigator was to offer resources and support for non-healthcare related transition milestones.

Plan-Do-Study-Act (PDSA) Cycles

In order to optimize the processes of the clinic, a continuous quality improvement model was utilized. This model includes the use of PDSA cycles, which are as follows: (a) Plan the intervention and measure; (b) Do (implement) the intervention over a specific period of time; (c) Study (evaluate) if the intervention had an impact on what was being measured; and (d) Act on the results to either continue, stop or modify the intervention (Bollegala et al., 2016).

Methods

Participants

Participants were PCPs in the Denver Metro Region who had referred adolescents and young adults with IDD, ages 12 to 26 years, to the Transition Clinic from 2014-2015, as well as the patients with IDD who were seen in the Transition Clinic. The patients presented with a chronic, significant disability in at least one of the following five developmental domains: social/emotional, language, motor, cognitive, and adaptive. Patients had a wide range of diagnoses including autism spectrum disorder, intellectual disability, cerebral palsy, 22q11 deletion syndrome, and other rare genetic disorders, in addition to variable levels of disability, from mild to severe. We surveyed 29 referring PCPs, which included pediatricians, family medicine physicians, internal medicine-pediatric physicians, physician assistants, and nurse practitioners. PCP practice settings included large and small private practices, community clinics, and hospital-based primary care specializing in youth with complex medical needs. Announcements about the Transition Clinic in hospital and physician relations newsletters, mention of the clinic at continuing medical education presentations about transition, and communication among providers and families were the primary recruitment strategies for clinic referrals. Thirty-eight telephone surveys occurred with 29 PCPs. Five of the 29 providers surveyed referred multiple patients and were surveyed for each patient encounter. Thus, each survey was from a unique provider-patient dyad with 38 dyads being assessed. There was diversity in the anticipated transition plans of the dyads; many PCPs were hoping to transfer care to an adult provider; the family medicine physicians planned to continue caring for the patient yet were interested in improving the transition to adulthood process for their patients; and one adult provider accepted a patient from a pediatric provider. The purpose of the telephone survey was to assess PCP's usage of the resources from the Transition Clinic and reveal potential barriers inhibiting PCPs from engaging in the transition process.

Clinic Procedure

Upon arriving at the clinic, the patient and family completed the Transition Readiness Assessment form (The National Alliance to Advance Adolescent Health, 2014) in the waiting room. The Transition Readiness Assessment form is a one-page document with a series of questions on a patient's knowledge about their own health as well as a section on their ability to navigate the healthcare system. Both patient and parent transition readiness forms, available at the Got Transition website, were used (The National Alliance to Advance Adolescent Health, 2014). The parent form was completed for each patient, and the patient form was completed if the individual had the ability to read and complete the questionnaire. Based on the results of the readiness assessment and review of each patient's overall transition status, the medical provider (Developmental-Behavioral Pediatric fellow under the supervision of an attending physician) formulated a Transition Action Plan with the patient and family. He also provided specific recommendations regarding nonmedical transition milestones, depending on the need of each patient and family (Supplemental Security Income [SSI], guardianship, school transition, adult services, transportation, insurance, vocational supports).

Before leaving the clinic, each family received an After Visit Summary (AVS), which summarized the action plan and specific nonmedical recommendations. The AVS also had a section outlining recommendations for the PCP. This section reviewed the six core elements of transition (transition policy, transition registry, transition readiness assessment, transition planning/portable medical summary, transfer of care, and transition completion). Each recommendation included a brief description of that element along with a link to www.gottransition.org, which offers free templates for each recommendation. The family also received a portable medical summary created before the clinic visit by chart review. Two portable medical summary templates were used during this time. The Cumulative Patient Profile created at Vanderbilt University (Vanderbilt Kennedy Center for Excellence in Developmental Disabilities, 2011) was used for the first three PDSA cycles. After feedback was received about this template, we created a new portable medical summary template influenced by Vanderbilt's Cumulative Patient Profile and the Portable Medical Summary template from Got Transition (The National Alliance to Advance Adolescent Health, 2014). After the first hour, the family also received a one-page Transition Roadmap, condensed and modified from the Got Transition resources. The Roadmap outlined transition milestones, including ages in which to address them, short descriptions, and resources for each milestone. The transition navigator then reviewed and discussed nonmedical transition issues in further detail with patients and families. This part of the visit included giving more detailed explanations on nonmedical transition milestones, as well as further highlighting community resources. After the visit, the AVS, Portable Medical Summary, and Transition Roadmap for PCPs (see Table 1) were faxed to the PCPs' offices. The Transition Roadmap faxed to PCPs was an expanded version of those provided to families.

Table 1

Roadmap Outlining Transition Milestones Sent to Primary Care Providers by the Transition Clinic

Roadmap Outlining Transition Milestones Sent to Primary Care Providers by the Transition Clinic
Roadmap Outlining Transition Milestones Sent to Primary Care Providers by the Transition Clinic

PDSA Cycles

Six PDSA cycles occurred during this project, with each cycle lasting 3 months. As this clinic was a pilot clinic, the PDSA format was chosen to allow for changes as concerns around certain clinic processes arose. Changes to communications and informational materials were made based on feedback from PCPs, and operational changes were made to improve the efficiency of the clinic. Data were gathered throughout the PDSA cycles and modifications were made during the month that occurred between the end of one cycle and start of the next one.

Data Collection

The Institutional Review Board and the Organizational Research and Quality Improvement Review Panel granted approval for data collection. Three to 6 weeks after each patient was seen at the Transition Clinic, contact was attempted to each PCP for a brief telephone survey. The PCPs were asked one open-ended qualitative question assessing how the resources given could be more useful. They were also asked six yes/no quantitative questions assessing if the provider (a) read the resources, (b) implemented any of the recommended core elements of transition, (c) found any of the medical transition recommendations useful, (d) thought any of the medical transition recommendations impractical, and (e) considered any of the nonmedical transition resources useful. Study data were collected and managed using Research Electronic Data Capture (REDCap; Harris et al., 2009) electronic data capture tools. REDCap is a secure, web-based application designed to support data capture for research studies. Clinic attendance and no-show rates were also tracked throughout this project.

Data Analysis

Attendance rates were calculated after each PDSA cycle to determine the effect of change. Quantitative data were analyzed assessing frequencies and percentages of responses. Qualitative data were analyzed using a coding, consensus, and comparison methodology, which followed an iterative approach rooted in grounded theory (Glaser, 1992; Glaser & Strauss, 2009). Two coders independently reviewed the responses to the open-ended questions. They initially used the ocular scan method and inter-ocular percussion test (Bernard, 2012), reading all responses multiple times as larger themes emerged. The codes then used key-word-in-context method (Wood, 1984) to further identify subthemes. This method consisted of sorting quotes that had key words with similar meanings. An example is looking for the word “time” or units of time (“day,” “hours”) for the “time constraints” theme or looking for the words “find” + “adult,” “provider,” “family physician,” or “internist” for the subtheme of “difficulty finding physicians to transition to.” The two coders then met to go over themes and subthemes. The coders agreed with the themes and came to a consensus with subthemes, including nomenclature, and which quotes correspond to which themes. The two coders then met with a third coder, once again reviewing themes and subthemes, resulting in a final consensus on themes and subthemes. The coders met a final time to review the data, and review which quotes aligned the appropriate subthemes to finalize consensus.

Results

Clinic Attendance

Of the 72 available appointment times for the transition clinic, 62 were filled. Forty-eight of those 62 patients arrived on their appointment date. Thus, there was an overall 23% no-show rate (Table 2). Of note, this rate decreased from 30% to 18% after families were required to call to schedule their appointments, as a result of a change made after the second PDSA cycle.

Table 2

Survey Results of Quantitative Data

Survey Results of Quantitative Data
Survey Results of Quantitative Data

PDSA Cycle Changes

The following PDSA cycle changes were made: AVS shortened; change in scheduling requiring families to call to schedule a visit; letter prior to the clinic sent in advance to the primary care provider's office informing them of the clinic and their patient's upcoming appointment; new portable medical summary template created in place of Cumulative Patient Profile; Family Transition Roadmap translated into Spanish; format change in After Visit Summary to better highlight recommendations for primary care providers (Table 3).

Table 3

Plan-Do-Study-Act (PDSA) Cycle Interventions

Plan-Do-Study-Act (PDSA) Cycle Interventions
Plan-Do-Study-Act (PDSA) Cycle Interventions

Telephone Survey

Quantitative data results

Of the 48 patient visits to transition clinic, 38 provider telephone surveys were completed. Ten did not occur due to the following reasons: (a) three patients did not have a PCP; (b) one patient did not have IDD; (c) one PCP had left the practice after receiving the resources and could not be contacted; (d) three providers could not be reached via telephone despite numerous attempts; and (e) two of the patient visits were follow ups and no new recommendations or resources were needed for the PCP (one was due to the PCP not wanting to be involved in the transition process, and the other was to go over transition planning with a parent who was not present at the first visit). Providers were interviewed for each patient visit; as a result, 29 providers were surveyed on 38 of their patients. PCPs reported reading either the After Visit Summary (AVS) or the Transition Roadmap 84% (32/38) of the time. Both the AVS and the Transition Roadmap were read 79% (30/38) of the time (see Table 2).

For 15 of the 38 (39%) patient/provider dyads, PCPs engaged in at least one of the core elements of transition (transition policy, tracking and monitoring, readiness, planning, transfer of care, and completion of transfer) recommended in the AVS. The recommendation most commonly followed by PCPs was incorporating the Portable Medical Summary into the patient's medical records (10 occurrences). Other recommendations that were followed by PCPs were (a) use of a transition action plan and communicating with an adult primary care provider (three occurrences), (b) creation of a transition policy (two occurrences), (c) use of a transition registry (one occurrence), (d) use of a transition readiness assessment (one occurrence), (e) creation of an emergency action plan (one occurrence), and (f) draft a letter to an adult provider (two occurrences). (See Figure 1). Of the 15 instances in which at least one of the recommendations was acted upon, 11 (73%) happened as a result of the resources provided from the Transition Clinic.

Figure 1. 

Medical transition recommendations found useful by primary care providers.

Figure 1. 

Medical transition recommendations found useful by primary care providers.

Although providers engaged in at least one of the recommendations only 15 (39%) times, at least one of the recommendations were found to be useful in 30 of the 38 dyads (79%), and each recommendation was found to be useful in at least 8 dyads. The most commonly cited useful recommendation was the portable medical summary, which was used for 27 patients. The transition action plan (19 occurrences) and the readiness assessment (18 occurrences) were also frequently cited as useful (Figure 1). When asked if any of the recommendations seemed to be impractical or not useful, only six dyads (16%) found any of the recommendations as such. At least one of the nonmedical transition resources was found to be useful in 20 dyads (53%), and all were seen as useful in five of the dyads. The most commonly cited useful nonmedical resource pertained to guardianship, being cited 12 times (Figure 2).

Figure 2. 

Nonmedical transition resources found useful by primary care providers.

Figure 2. 

Nonmedical transition resources found useful by primary care providers.

Qualitative data results

Results from the data analysis revealed three main themes: Barriers to Engaging in Transition Planning, Issues with the Resources Provided, and Positive Feedback. Each of these themes will be discussed along with subthemes. Examples from the transcript will be provided to further illustrate the experiences of PCPs during the transition process.

Barriers to engaging

Barriers to engaging in the transition process for the PCPs were mentioned in 28 (74%) of the surveys, representing both internal and external barriers. Internal barriers are those deriving from the providers themselves, such as a lack of self-efficacy to engage in this process. External barriers are those that were felt to be outside the provider's control, such as logistical barriers within the community. Internal barriers commonly cited were the lack of knowledge and experience, both of the transition process and unique needs of individuals with IDD, required to engage in this process adequately. PCPs felt that it would be difficult to become knowledgeable and efficient in the transition process for individuals with IDD, as they did not have enough patients with IDD in their practice to become proficient in this process. One PCP stated, “it is hard to keep up with the resources, especially in that I do not have to do these things very often and it is hard to get good at [transition planning].” This lack of self-efficacy led a number of PCPs to express the need for someone else besides themselves to manage the transition process, such as a social-worker/care-coordinator, specialty clinic, or patient/families themselves bearing much of the responsibility for the transition process. One PCP stated “having a place to send them is really important and needed because I don't see myself ever getting good and efficient at [engaging in the transition process].” External barriers also were commonly cited as being prohibitive to engaging in the transition process. These barriers included (a) lack of providers who will accept adults with IDD, (b) family/patient barriers, (c) time constraints imposed on them by the current health care system, and (d) logistics in their practice setting complicating the transition process. The lack of adult providers was the most commonly cited external barrier to the transition process, with 11 (29%) of PCPs citing this issue. This barrier included adult providers in the area who were perceived as interested and competent in managing adults with IDD, as well as providers who accepted Medicaid. One provider who practiced in both pediatric and internal medicine settings at the same academic institution still had issues transitioning her patients to herself. “The part that is more difficult is finding a landing place. I want to transition patients to my adult clinic but I am not allowed to take Medicaid so my hands are tied.” Family and patient barriers were cited by nine (24%) PCPs. This barrier included resistance to transition from families/patients, psychosocial issues of families, and patient crises. One physician noted a number of psychosocial family barriers to transition: “In this case, her parents are not documented and do not have a doctor, and I cannot recommend their physician for her since they do not have a doctor.” Another provider disclosed that the patient's mother died unexpectedly shortly after their visit to the transition clinic. “With the death of his mother, his best friend, and supporter in his life, I don't see us going ahead with any recommendations for a while. If this was two months ago, I think we would be doing a lot of these recommendations.” Time constraints within the current health care system were seen as a significant barrier to engage in this process. For example, one of the recommendations was to create a portable medical summary that highlighted the most important aspects of a patient's medical and developmental history that would help a new provider quickly understand the important needs of their new patient. The process of creating this was quite time consuming as stated by one provider, “It's hard to create a detailed summary for each complex patient because of the amount of time it would take to make one. I have a number of complex patients, and it would be hard to make a detailed summary for each of them.” Practice logistics also played a role in creating barriers to the process. This barrier included incorporating the portable medical summary into the electronic medical record system as well as the difficulty communicating with adult subspecialists who work in a different system, and concerns about reimbursement for transition planning.

Issues with the resources provided

Issues with how the AVS and Transition Roadmap were presented were raised by 17 (34%) of the PCPs surveyed. These issues included the way in which the AVS was formatted, the need for more specific recommendations, and being overwhelmed by the amount of information and recommendations given. Some providers were not certain what they were supposed to do based on the recommendations and resources given. PCPs also expressed the desire to have more specific recommendations for the provider and family. The recommendations and resources were also seen as too much and overwhelming at times, “The material has a lot of words. The formatting is a lot. When you look at, it looks like a ton to do.”

Positive feedback

Despite significant barriers and issues with the resources noted previously, the most common theme was positive feedback on information that was sent to them. Even though the question asked how the resources could be more helpful, 25 (66%) of the PCPs surveyed gave positive feedback. Feedback included PCPs stating that the resources given were helpful, as well as PCPs thinking about implementing some of the recommendations in the future, and four providers mentioned the potential implementation of the recommendations for their entire practice.

Discussion

This quality improvement project sought to improve the implementation of transition planning resources by community PCPs for patients with IDD. This project was unique in that it informed how PCPs from a variety of practice settings engage in transition planning for youth with IDD. Results were consistent across settings and quite informative with regards to lessons learned, how systems can disrupt well-thought-out guidelines, and what setting might be most appropriate to aid in the transition of youth with IDD. These findings could guide future models on implementation of best practice guidelines to increase PCP transition planning to meet the Healthy People 2020's goal.

Lessons Learned

Many lessons were learned during this quality improvement project that guided some of the PDSA cycle changes. These lessons included how to better format materials, deliver information, and improve scheduling by having stakeholders more vested in the process. We also became more aware of needing significantly increased capacity to provide comprehensive transition care for individuals with IDD.

The method and style of delivery of information often is just as important as the content. This project was no exception. Although it is tempting to provide detailed explanations with resources for each step of transition, these types of materials tended to overwhelm and confuse many PCPs. Feedback about the length of the After Visit Summary (AVS) from providers indicated that too much information was provided (i.e., too many recommendations to digest) and too long (i.e., length and wordiness of explanations). Explanations in the AVS were shortened to very brief bullet points. It was apparent that PCPs did not find it useful to address all the core elements of transition after a single visit. They expressed the desire to receive recommendations and resources that only were pertinent to their patients at the time of the visit. This finding is consistent with the responses wishing for a Transition Clinic to handle most of all of the transition process and for PCPs to engage in the more manageable aspects of transition. Thus, future transition clinics may consider giving recommendations specific to patients' current needs, and update recommendations on an annual or semiannual visit. Another lesson learned was the need to expand these processes to be sensitive to the needs of families for whom English is not their primary language, based on a PCP's recommendation to include resources in Spanish for patients whose primary language was Spanish. A first step to address this issue was translating the Roadmap into Spanish, which was one of the PDSA cycle changes; although, this will not address all barriers faced by other non-English speaking and diverse populations. Those working with these families should remain vigilant to language and other family and cultural barriers as they implement transition procedures.

In order for a successful transition to occur, it is important that all stakeholders are motivated and engaged, including patients, families, and PCPs (both pediatric and adult). It is also important to understand families' perceptions and their own barriers to transition. If a family is not ready for transition (whether it is due to a current crisis, or lack of time or resources to engage), they are likely to avoid the process, as seen with no-shows when someone else had initiated the process for them. One of the PDSA cycle changes was to require families to call in order be scheduled in the Transition Clinic as a way to show some investment in the process. Once this change was put in place, the no-show rate decreased from 30% to 18%, indicating good participation when families felt ready to address transition. A weakness of the clinic was the lack of involvement of adult PCPs, which was related to the difficulty of finding adult providers in Colorado who have an interest in managing patients with IDD and accept Medicaid insurance. The PCP who was unable to transition her own pediatric patients into her internal medicine practice due to restrictions on Medicaid patients was particularly striking. In a patient population where many will have primary Medicaid coverage starting at 26 years of age, the problem with inadequate insurance coverage presents significant barriers to medical care access. This is a significant systems issue in this part of the country that needs to be addressed.

There are operational and personnel needs to consider when supporting a transition clinic for individuals with IDD. These needs include having (a) built-in time allowed to engage in the process for the PCP; (b) support staff who are knowledgeable of the transition process; (c) nonmedical transition needs and up to date on resources; and (d) an electronic medical record system that can incorporate aspects of the process, especially a portable medical summary that is able to be updated over time and easy to read when sent to a new provider. These needs all require financial and time commitments by a practice or hospital interested in developing a transition process or clinic for the IDD population or any patient population with complex needs. This support can occur either within a primary care setting or through a specialty transition clinic, depending on each patient's needs and the capacity of each practice or institution. There have been efforts made to have transition planning time reimbursed by payers to support this process, and further advocacy is needed.

Useful Resources Do Not Always Lead to Action

There was a clear discrepancy between PCPs finding the recommendations useful and actually acting on them. Thirty of the 38 (79%) surveyed found at least one of the recommendations useful but only 15 (39%) did any of them. Qualitative findings highlight several barriers to the engagement of PCPs in the transition process and inform why there is discrepancy between finding the recommendations useful and actually implementing them. These barriers include (a) not having the time available to engage in this process; (b) lacking the knowledge and experience in both the transition process in general, as well as in managing youth with IDD and medical complexity; (c) having a dearth of providers who treat adults with IDD and accept Medicaid insurance; (d) lacking the office capacity to fully engage and barriers around the logistics of transition planning (e.g., electronic medical records not set up to have a portable medical summary); and (e) addressing co-occurrence of complex psychosocial issues during the transition process. Thus, although a primary care provider might agree with many of the recommendations and find the resources useful, there are often significant external forces that impede engagement of community PCPs.

Consultative Model Versus Comprehensive Clinic

The barriers for community providers to transition youth with IDD, even when provided with consultation and needed resources, raise the question of where the transition process should occur. As PCPs may have only a small number of patients with these specific needs, their experience with the transition process for them is likely limited. PCPs therefore may find it difficult to know all the appropriate resources and become efficient in the transition process for patients with IDD. Having a transition clinic bear more responsibility for the patient's transition would not replace the PCP's role in the transition process; rather, it would provide continuous support throughout transition, especially around the unique needs for this group of patients. As many of the nonmedical aspects of the transition process (e.g., guardianship, SSI, school, transportation, etc.) frequently are fragmented, it would be important for families to have a centralized resource. This further highlights the need of support staff, such as a care coordinator and/or social worker, to be included in future transition clinics for individuals with IDD.

Limitations

This project had several limitations. One limitation noted previously was the lack of an adult provider or practice partnering with our clinic, which was largely due to the scarcity of local adult providers accepting patients with Medicaid. Another limitation was the heterogeneity of both the patient and PCP populations, with patient's disabilities ranging from mild to severe. Medical practices also ranged from small to large private practices, community health centers, and hospital-based PCPs who specialized in complex care. However, the responses to the surveys were very similar across settings, indicating larger, systemic issues impeding on successful transition. Overall, this was a limited sample size from one state, and the local and regional context of the clinic contributed to the findings. Although the transition planning process has been shown to be achievable in academic centers with the required capacity, this does not appear to be the situation for the community-based PCPs participating in this project. Further work needs to be done outside of this region to assess if the findings hold true across other settings. Five providers were surveyed multiple times as they referred more than one patient to the clinic. This potentially could have biased the results as each survey was counted independently of the others. However, those five providers offered variable responses as each patient had unique transition needs. For example, one provider felt that a family's psychosocial dynamic was inhibiting transition for one patient, and the same provider cited the difficulty of finding adult subspecialists as a barrier to transition for another patient. Also, the responses of the five providers overall did not differ from the themes revealed from the other PCPs. Another limitation was the lack of data collected from families to reveal their perspective. Anecdotal feedback from families was quite positive overall but was not collected in a standardized manner. Another limitation was the design of the PDSA cycle that made it difficult to measure changes over time. The cycles were focused on improving the materials given to the PCPs as well as improving the operation of the clinic. Unfortunately, besides an improved no-show rate, the PDSA cycle changes did not seem to have an effect on our primary outcome measure, which was participation of PCPs in the transition planning processes. Some of the barriers noted previously (time constraints, difficulty finding an adult PCP, family psychosocial issues, lack of knowledge, and experience in the transition process, etc.) might be beyond the scope of expected changes seen in PDSA cycles.

Conclusion

We found that PCPs displayed limited involvement in the transition process of their patients with IDD even when provided with a comprehensive consultation and needed resources from a Transition Clinic. Despite limited engagement, PCPs in this project did understand the importance of transition. However, it was difficult for them to become efficient and knowledgeable about this specific population as they tend to have a small number of patients with IDD under their care. There also were factors outside PCPs' control that potentially could have affected their engagement in the transition process, such as insufficient office capacity, lack of adult providers, resistance from families and patients, and psychosocial barriers. Transition in the IDD population needs to be as individualized as possible, given each patient's unique needs. Future directions for a Transition Clinic for individuals with IDD might require a comprehensive clinic throughout the transition process, which would include return visits, instead of a consultative model where the PCP is responsible for managing transition. There also needs to be continued conversation on how to build capacity for this process and how to support more adult providers in managing this unique group of patients. This support must include advocating for more adult PCPs to receive patients who have Medicaid insurance and/or providing them with incentives and supports to be able to do so. Changes could potentially include adding management of adults with IDD to the graduate medical education curriculum for internal medicine and family medicine residency programs, as well as including financial incentives and changes in reimbursement models for providing medical homes to adults with IDD. Improvement of the transition process is complex and multifaceted, and one that requires ongoing efforts to improve knowledge, streamline the process, increase access to care, and improve outcomes.

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Author notes

This manuscript was presented as a poster at the 2016 Annual Spring Pediatric Research Poster Session at Children's Hospital Colorado on 5/20/2016. Part of the manuscript was presented as a poster at the Society of Developmental Behavioral Pediatrics Annual Meeting in Las Vegas, Nevada on 10/5/2015.

Funding: This project was supported, in part, by the Health Resources and Services Administration (HRSA) under the Leadership Education in Neurodevelopmental Disabilities (LEND) Grant T73MC11044 and the Maternal Child Health Bureau Grant T77MC25731; by the Administration on Intellectual and Developmental Disabilities (AIDD) under the University Center of Excellence in Developmental Disabilities (UCDEDD) Grant 90DD0632 of the U.S. Department of Health and Human Services (HHS); and the National Institutes of Health under the NCRR Colorado CTSI Grant UL1 RR025780. Its contents are the authors' sole responsibility and do not necessarily represent official views of the funders.

We thank Edward Goldson, MD, University of Colorado School of Medicine, and Carolyn Green, MD, University of Colorado School of Medicine, who provided insight and expertise that greatly assisted this project and for their comments on an earlier version of the manuscript.

We thank Developmental Pediatrics and Special Care Clinics, both located at Children's Hospital Colorado, for providing space and clinical support for the Transition Clinic.

University of Colorado Multiple Institutional Review Board Protocol#: 15-1485

Organizational Research and Quality Improvement Review Panel of Children's Hospital Colorado Protocol #: 1403-1