Abstract
Transition from pediatric to adult health care systems presents unique challenges for adolescents with autism spectrum disorder who often have complex medical and mental health needs. Without a coordinated transition plan, pediatric providers often continue to provide care to young adults with autism spectrum disorder beyond the scope of their medical training. Adult providers may be unwilling and untrained to accept care for young adults with autism spectrum disorder. This quality improvement study identified baseline transition-related practices within a pediatric medical home practice and developed a model to promote transition to adult heath care for patients with autism spectrum disorder. Participants were 251 patients with autism spectrum disorder aged 12–21 years. Baseline data revealed limited and inconsistent communication directed to patients and families regarding transition. An evidence-based and replicable transition checklist, templated documentation, and resources geared to patients aged 12–21 years were developed. While improvement was noted in number of visits addressing transition, medical providers skipped or deferred transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to defer to social work to address transition, and difficulty identifying adult providers with whom to collaborate regarding care needs.
Lay abstract
As adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions.
According to the Centers for Disease Control and Prevention (CDC), prevalence rates of autism spectrum disorder (ASD) have been increasing over time (Baio et al., 2018). Increased prevalence leads to a growing number of adolescents and young adults with ASD transitioning from pediatric to adult health care systems. The variety of ways in which ASD impacts functioning, as well as the range of severity levels, can present challenges both for the youth and the family in navigating the health care system. There are also challenges for primary medical care providers in accommodating patient needs. In addition to impairments related to the core features of ASD, a majority of youth with ASD have at least two co-occurring health or mental health conditions and 75% are prescribed at least one medication (Roux et al., 2015). Medical conditions may include gastrointestinal problems, dietary issues, or seizures as well as obesity with subsequent cardiovascular and metabolic involvement (Croen et al., 2015; Davignon et al., 2018; Muskens et al., 2017). Mental health co-morbidities often include attention deficit/hyperactivity disorder, anxiety, depression, obsessive compulsive disorder, bipolar disorder, or schizophrenia (Croen et al., 2015; Tyler et al., 2011). In addition, youth with ASD are at a higher risk for accidents, bullying, substance abuse, and sexual victimization in adulthood (Brown-Lavoie et al., 2014; Volkmar et al., 2017). The transition to adult health care services is inevitable for youth aging out of pediatric services, and given the spectrum of symptoms, range in impairment, and presence of co-occurring health and mental health conditions, it is essential that health care transition be individualized, high quality, and seamless for youth with ASD as they become adults.
Despite an increase in health-related issues and vulnerabilities, there is a noted decline in service utilization across multiple health settings as youth with ASD transition to adult health care (Nathenson & Zablotsky, 2017). While a deliberate and coordinated health care transition is critically important to ensure that individuals receive uninterrupted quality care throughout their life, this is a largely unmet need for the majority of transition aged youth with ASD. According to data collected by the 2016–2017 National Survey of Children with Special Health Care Needs (NS-CSHCN), only 15.8% of adolescents with mental, behavioral, or developmental disorders (MBDD) receive adequate transition planning support (Leeb et al., 2020). Within the MBDD group, only 8.9% of those with ASD received adequate transition support. Despite slight differences in the elements that defined adequate transition support, this suggests that transition support has decreased substantially from NS-CSHCN surveys over the past 10 years. Specifically, results from the 2009–2010 survey reported that 28.9% of adolescents with MBDD received adequate health care transition services (McManus et al., 2013). The 2005–2006 survey results indicated that 21% of youth with ASD received adequate transition planning (Cheak-Zamora et al., 2013). Furthermore, data published in the National Autism Indicators Report: Transition into Young Adulthood (Roux et al., 2015) found that while nearly all youth surveyed had some type of health insurance and over 75% were receiving needed treatment at the time of that survey, only one-third reported that their pediatric medical provider had discussed transition. Other research surveying caregivers of youth with ASD reported only 15% of youth with ASD received transition services (Cheak-Zamora et al., 2014). Health care challenges remain for many adults with ASD, as adult medical providers often have little experience working with adolescents and young adults with special health care needs (Nehring et al., 2015).
It is important to understand variables that may influence receipt of transition planning and services. Factors include variability of support needs, limited available supports outside the family, and discrepancies in the goals and expectations of varied stakeholders including patients, families, schools, and pediatric and adult medical providers (Anderson et al., 2018). There is often confusion for both the pediatric medical provider and patient/family about how to navigate transition. While pediatric medical providers may be skilled at encouraging typically developing adolescents to take increasing responsibility for their health care, for example, by teaching them about diet and exercise or medication management, it is less clear whether pediatric medical providers are comfortable with adapting their teaching methods and goals to promote increased health care responsibility among their patients with ASD. Adolescents with ASD and their families often report that conversations about transition are initiated too late, and that there are limited age-appropriate services available, as many adult services are targeted toward older adults (Paul et al., 2015). In cases where parents do not retain guardianship as the youth becomes 18, parents may experience challenges in accepting transfer in decision-making. Parents also may be challenged in encouraging adolescents and young adults with ASD to become more independent in personal health knowledge and care. In focus groups with young adults with special health care needs, family members, and medical providers, pediatric and adult health care systems were identified as separate cultures, with differentiated skill sets (Reiss et al., 2005). Qualitative studies with adolescents with ASD and their parents reveal additional concerns related to transition to adult health care (Cheak-Zamora et al., 2017; Cheak-Zamora & Teti, 2015). Parent concerns included difficulty breaking bonds with the pediatric medical provider, lack of support transitioning from pediatric to adult health care, limited knowledge of ASD among adult medical providers, and pursuing guardianship. Adolescent concerns centered on desire for greater independence coupled with fear and inexperience in managing their own health care, and confusion and anxiety around the role of the pediatric medical provider in promoting their transition to adulthood. Adolescents also reported that pediatric medical providers typically addressed their parents rather than speaking to them directly.
Transition to an adult medical provider can be difficult for the patient, family, and the pediatric medical provider to accept, especially after many years of building a strong patient–provider relationship. Limited communication between pediatric and adult medical providers and a lack of continuity of insurance coverage present additional barriers (Nehring et al., 2015; Paul et al., 2015). In addition to difficulty identifying adult medical providers who are skilled in caring for patients with ASD, inadequate insurance reimbursement for the additional time needed to appropriately care for such patients may be a disincentive for adult providers to treat new patients with ASD (Milen & Nicholas, 2017; Warfield et al., 2015).
Despite these challenges, there are several existing resources to aid transition to adult health care for youth with special health care needs. The American Academy of Pediatrics (AAP) recently reviewed transition needs as part of overall management, including topics such as guardianship, entitlement programs, and educational planning (Hyman et al., 2020). A clinical report jointly produced by the AAP and the American Academy of Family Physicians (AAFP) in 2011 and updated in 2018 provided medical providers with a detailed algorithm for how to facilitate uninterrupted, high quality, and developmentally appropriate health care transition for youth beginning in early adolescence (AAP et al., 2011; White et al., 2018). The 2018 report described an evidence-informed, structured health care transition process called the “Six Core Elements of Healthcare Transition.” Resources to support these core elements were further developed by Got Transition®/Center for Health Care Transition, a collaboration by the Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Healthcare (Got Transition, 2014). Got Transition has published a variety of practical resources for clinicians, youth, and families including readiness assessments, transition of care checklists, and feedback surveys.
While these resources provide a valuable foundation, there remains a need for health care transition resources, training, and practice implementation specific to youth with ASD. Primary care services that are continuous from childhood through adulthood play a critical role in addressing these health care needs by providing the appropriate preventive care and intervention when initial medical or mental health concerns and symptoms present. The medical home model may be especially suited for successful transition planning and implementation given the focus on care coordination (Farmer et al., 2014). The family-centered medical home model is defined by the AAP as an “accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective” style of care (Medical Home Initiatives for Children with Special Needs Project Advisory Committee. American Academy of Pediatrics, 2002, p. 184).
The objective of the quality improvement project described in this article is to address resource, training, and implementation gaps in health care transition for youth aged 12–21 years old with ASD through the development, implementation, and evaluation of a transition care tool within a Patient-Centered Medical Home (PCMH) practice. Resources developed included an ASD-modified Home environment, Education/ employment, Eating, Activities, Drugs, Sexuality, Suicide/depression, and Safety (HEEADSSS) assessment, practice and patient checklists, age-specific resource guides, and integrated electronic health record (EHR) transition templates for both social workers and medical providers which could be disseminated to pediatric primary care providers working with youth with ASD.
Methods
Setting
The project was conducted within a multi-site hospital system in the United States that currently serves approximately 37,000 patients with special needs, from birth to 21 years of age. Among the services provided, two sites include outpatient Special Needs Primary Care Practices (SNPCP) that have been recognized as a Family-Centered Medical Home by the National Committee for Quality Assurance and which serve over 3100 children, adolescents, and young adults. The SNPCP served as the settings for this project. SNPCP staff includes a medical section chief, pediatric primary care medical providers (physicians and advanced practice nurses), patient care coordinators, social workers, referral liaisons, and the practice manager. In this model, physicians and advanced practice nurses provide medical care to develop a relationship with patients and their families, care coordinators facilitate the utilization of services and ongoing care for patient health care needs, and social workers support families through advocacy and provision of resources.
Participants
Among the 3100 patients in the SNPCP, 634 patients had an ASD diagnosis, and 251 of those patients with ASD were 12 years or older. Based on the recommendations of the AAP and AAFP (AAP, AAFP, ACP et al., 2011) and Got Transition (2014) that health care transition planning begins at age 12, those 251 patients who were aged 12 years or older were the targets of the quality improvement project.
A transition team was created to include various stakeholders. The team consisted of a broad range of experts in health care and stakeholders including the medical section chief of the SNPCP, coordinator of autism services for the hospital system, project manager, two family members of patients with special needs (one parent of a youth diagnosed with ASD and one parent of a young adult with cerebral palsy), three social workers, one patient care coordinator, four pediatric primary care physicians, a neurodevelopmental advanced practice nurse, and two consultants representing family medicine and transition services for people with intellectual and developmental disabilities (ID/DD). Members of the team met nine times over the 2-year project period from June 2016 through June 2018. The first meeting was in person, and subsequent meetings were primarily by telephone. The team was charged with developing a transition program for the SNPCP through determination of processes, formulation of implementation, and review of progress. Two additional primary care advanced practice nurses participated in the implementation phase of the project.
Development of the ASD transition program
The ASD SNPCP transition program was developed as part of a 2-year quality improvement project intended to support patients with ASD transitioning to adult health care. Review of current processes, development of resources, and implementation were conducted. Given the nature of transition services and the prevalence of comorbid medical or mental health conditions, the process and resources were employed for patients throughout the SNPCP with any special need. This project utilized aspects of Got Transition’s (2014) Six Core Elements of Health Care Transition™ Version 2.0 as well as newly developed approaches to tailor the process to youth with ASD.
Baseline
Baseline measures were captured in order to determine the “As Is” state of the practice and consisted of surveying parents and pediatric medical providers, and an assessment of core clinical systems technology related to transition.
Parent survey
The two parents from the transition team and an SNPCP social worker administered the Got Transition’s (2014) Sample Health Care Transition Feedback Survey to determine the current state of transition services being offered within the practice. The aim of the survey was to determine (1) patient/family feelings about transition, (2) where patients/families felt improvements were needed in how the practice addressed transition care and (3) in which transition-related areas patients/families felt the practice adequately addressed transition. Thirty patients with ASD ranging from ages 14 to 22 years old were randomly selected from the SNPCP patient list, and their parents were contacted by telephone and invited to participate in the survey. The adolescent and young adult patients were not surveyed. Two telephone contacts were made, with messages left in the parents’ primary language (English or Spanish). Nine mothers, two fathers, and one mother–father couple responded. One of the respondent families had two adolescent children with ASD in the practice. Twenty-five percent of the respondents identified as Latino, and the majority identified as non-white (58% black, multi-racial, or other; 42% white). The average patient age was 17 years (range = 14–21). The survey was administered by telephone, and additional comments were recorded verbatim. While respondents described their SNPCP provider as typically explaining things well (75% favorable), listening carefully (100% favorable), and respecting family customs or beliefs (92% favorable), reported practices specifically related to transition were limited. For example, only 25% had been informed of office policy regarding age of transition to an adult medical provider. Only 8% reported that the pediatric medical provider met with the youth alone, although several of the respondents described their need to be present due to the youth’s limited cognitive and communication skills, or the youth’s stated preference in having the parent present. The SNPCP providers were described as not working actively with the youth to gain skills to manage health care or to plan for the future (0% favorable). No parent described themselves and the youth as prepared to change to an adult medical provider. Anecdotally, parents reported that although some SNPCP providers did briefly mention certain topics related to transition, the information was not provided on a consistent basis. In addition, parents reported that they were more likely to receive transition-related information and resources from schools, care managers, and other community organizations than through the SNPCP.
Provider baseline report
Individual discussions were conducted with SNPCP physicians as well as group discussions with the physicians, advanced practice nurses, social workers, and front desk staff at SNPCP during educational and staff meetings regarding how transition is addressed with ASD patients and what aspects of transition they found most challenging. All reported that communicating transition topics was challenging within the constraints of standard well care visits. Staff described transition to adulthood as a difficult phase and noted that family trust and comfort were perceived as reasons to continue receiving care from the pediatric medical provider beyond the pediatric age range and to defer searching for an adult medical provider.
Health Information Technology System Assessment
The Health Information Technology (HIT) System Assessment was created to list baseline core clinical systems used which related to transition services within the SNPCP. These included the EHR, patient portal, and hardware/software usage. The EHR integrated scheduling, registration, billing, and clinical documentation. Clinical documentation used customized templates to meet evidence-based practice standards and allowed further modifications. The HIT System Assessment revealed that no transition-based templates presently existed.
“As Is” Flow
Based on the baseline data, an “As Is” process flow was created to depict the baseline SNPCP workflow related to transition (Figure 1).
“As Is” workflow.
According to the “As Is” process flow, there was no standardized tool to facilitate transition in a systematic, comprehensive, and timely manner. Lack of time, limited transition awareness, and incomplete resources were identified as issues for pediatric medical providers who were prompted by the family/patient to address transition. The SNPCP did not utilize fixed appointment types for transition visits, nor did existing technology systems support transition. Transition needs were addressed on an ad hoc basis within the context of standard health care visits. The SNPCP transition team concluded that an evidence-based transition care tool, built to support all aspects of transition from introducing transition services to identifying, confirming, and providing a warm handoff from pediatric to adult medical provider, was essential to improve and ensure quality care as patients with ASD reached adulthood.
Intervention procedures
Resource review
The Transition Team reviewed published transition resources listed in Got Transition (2014), vetting resources based on applicability and clarity of the presentation. Selected resources were placed on a shared drive. The Transition Team created written resources where gaps were identified.
Resource creation
Transition Resource Guide
The resulting resources were converted to a printed Transition Resource Guide, organized by intended patient age range (12–13 years old, 14–16 years old, and 17–21 years old) as well as by topic. Topics included, but were not limited to, safety, puberty and sexuality, family support services, school and post-secondary education, vocational services, guardianship and supported decision-making, state developmental disabilities services and assessments, Supplemental Security Income, Medicaid eligibility, and independent living and housing. While the safety resources and some of the puberty and sexuality resources were ASD specific, much of the content of these and the other topics could relate to others with developmental disabilities and/or special health needs. Resources were directed to both youth and caregivers. Spanish language resources were included when available.
All guides included the following: detailed Transition Reference Sheets which outlined tips for navigating the transition steps for that age range and included references to additional resources (see Figure 2 for sample); Health Passport (Perkins, 2011) to summarize past medical history, current diagnoses, medications, and other information pertinent to the health care provider; Readiness Assessment for Youth and Caregivers (Got Transition, 2014) to determine what the patients know and feel they need to know about their health and how to use health care; and adult medical provider referral lists. The adult provider referral lists were compiled by the Transition Team by listing adult primary care medical providers across the state who reported that they were accepting new patients and accepted private insurance and/or Medicaid. Noted, as well, were special accommodations and proximity to public transportation. Parents, patients, and staff were the intended users of the guides.
Sample transition reference sheet.
Transition Checklist and Transition Template
Checklists and templates were created to imbed within the EHR to prompt, store, organize, and track information by multiple SNPCP team members. The Transition Checklist (see Figure 3) was created incorporating evidence-based recommendations (AAP, AAFP, ACP, 2011; Got Transition, 2014) and input from parents, providers, and members of the Transition Team. These checklists were transformed into EHR transition documentation templates broken into ages 12–13, 14–16, and 17–21, echoing the Transition Resource Guide age groupings. The project manager was the target audience of the Practice Checklist. The target audience for the template was all practice staff.
Transition Checklist.
The Transition Template (see Figure 4) was installed within the EHR adolescent well-visit appointment type to prompt and mandate medical providers to select the template to guide and document any well-visit appointment for adolescent and young adult patients.
Transition Template.
The template listed vital transition topics including introducing transition, reviewing readiness, reviewing patient/family goals, identifying an adult medical provider, and review of guardianship issues, benefits, and insurance eligibility. Similarly, the transition template was loaded for social workers within their EHR Patient Care System to enable tracking patient notes related to transition care. This allowed for social workers and pediatric medical providers to track one another’s transition conversations with any given patient. Social workers were instructed to use the transition template whenever they had a transition-related conversation with a patient, whether that was from a provider referral, a patient self-referral, or a social work-identified need. Both pediatric medical provider and social worker templates were viewable through the EHR. The medical providers could generate an electronic referral to social work for transition services through the EHR.
HEEADSSS-ASD assessment
A HEEADSSS-ASD assess-ment was adapted from the HEEADSSS assessment commonly used for structuring the psychosocial interview of the adolescent (Goldenring & Rosen, 2004). The ASD portion added items related to autism-specific safety concerns, social skills, and daily living. The providers were instructed to use the assessment to structure and guide the psychosocial interview within the visit (Figure 5).
HEEADSSS-ASD assessment.
Transition visit appointment types
Transition visit appoint-ment types were created within the EHR. The visit type was a 30-min appointment intended to be geared solely for transition-related communications and updates.
Implementation
An action plan was created to outline implementation steps. Each patient’s progress through the transition process was tracked through a centralized registry, which included review of scheduled appointment types, social work, and medical provider documentation.
Phase 1—training
A half-day workshop was organized for families to introduce the transition care tools and resources. Presenters included a SNPCP social worker, special needs attorney, and a representative from the state developmental disabilities agency. A parent also provided her perspective as someone who had gone through the transition to adult primary care with her adult son who had multiple disabilities. Over 30 parents of SNPCP patients with ASD attended.
All SNPCP staff members, including seven medical providers, two social workers, five support staff, five nurses, one medical assistant, and two patient care coordinators, were trained on the use of transition tools and resources by project staff during in-person practice staff meetings and daily staff huddles. Training was provided through didactic and discussion format. Additional individual meetings led by the project manager and one of the SNPCP social workers were conducted with each physician, advanced practice nurse, and patient care coordinator to reinforce training. These individual meetings included review of reference tip sheets created by the project manager with versions for pediatric medical provider and social worker. The tip sheets included EHR screen shots and reviewed billing and coding information, where to locate documentation within the EHR, role of medical provider/social worker for each template item, and guidelines for when to consider a template item completed. Hard copies of the tip sheets were provided and also available online to serve as resources post formal training. Pediatric medical providers received training about utilizing the HEEADSSS-ASD assessment to guide transition visits. Social workers were prompted to meet with patients and families either through a referral from the medical provider or by the social worker reviewing which scheduled patients were within transition age. Pediatric medical providers referred patients to a social worker for one of two reasons: the patient was 21 years or older and the provider wanted to transfer care to an adult medical provider, or the family presented with questions about adult services (Division of Developmental Disabilities applications/services, guardianship, Supplemental Security Income, aging out of school, etc.). In either or both situations, pediatric medical providers initiated a social work referral and a social worker met with a patient or family in the office or by telephone to discuss the identified transition topic. Social workers were trained in utilizing the Transition Resource Guide and related tools and resources to assess for other transition-related needs and were instructed to provide families with appropriate support and information. The SNPCP Section Chief also reviewed transition processes at monthly staff meetings.
Phase 2—Implementation of tools and transition visits
The second phase of implementation involved integration of the transition checklist and the transition template into the EHR. During SNPCP staff and individual meetings as described above, pediatric medical providers, social workers, and medical scribes were trained to use the template approximately 1 month in advance of its implementation. The template was automatically generated into the medical provider EHR note for adolescent well visits, with the goal that it would prompt providers to have conversations about transition with patients and families. Providers had the additional option to import the template into any follow-up or sick visits if they were discussing transition at that time.
This second phase of implementation also included the introduction of formal transition visits which were office visits for patients and families where the sole purpose was to discuss transition with the pediatric medical provider and/or social worker. In individual meetings with the project manager, support staff was trained how to schedule the visits, and pediatric medical providers were trained on how to use the visit time (i.e. not using these visits for physical exams). Transition visits could be requested by the pediatric medical provider, social worker, patient, or family. Transition visits with the pediatric medical provider took place in the office. When a social work visit was requested, the visit took place either in the office or by phone, depending on need and family availability. The transition checklist was designed to automatically flow into the note for the transition visit. The primary outcome measure was the utilization of the transition checklist by pediatric medical providers and social workers over a 1-year period from June 2018 to June 2019. In addition, providers were interviewed following implementation of the transition tool to gather feedback and identify areas for further improvement.
Results
For the period of June 2018 to June 2019, there were 449 adolescent well visits at the SNPCP. Of those 449 visits, pediatric medical providers were auto-prompted based on selected fields within the EHR to use the transition checklist 100% of the time. However, documentation using the transition checklist was only completed for 44% of those visits (n = 199). For the other 56% of visits, medical providers selected “not applicable” for the mandatory transition-related questions. In follow-up discussions, providers indicated that “not applicable” was selected to indicate that the topic of transition was skipped or deferred at that time. In addition to the well visits, there were 17 transition-only visits conducted. Age range of the patients seen for specific transition visits was 18–31 years (median = 22 years).
During this period, the social work transition template was used 179 times for a total of 112 patients. The template was used for any social work interaction, which could include an in-person visit or phone call. For patients and families with whom social workers were discussing transition, social workers had an average of 1.6 contacts regarding transition per patient. This suggests an improvement from baseline SNPCP practice and also indicates that further improvement is needed in the areas of pediatric medical provider to social work referrals and ongoing communication with patients, families, and providers that transition is, ideally, a process and not a single visit.
Following implementation and evaluation of utilization of transition tools, each of the seven SNPCP providers were individually interviewed in person by the SNPCP social worker regarding perceived areas for improvement. The interview consisted of five questions: (1) With parents for whom you used the transition checklist and template tools, why did you use them and were they helpful?; (2) When “n/a” was checked for a topic, is that because the topic was not applicable, or because it was skipped or deferred?; (3) In those cases, why was it skipped/deferred?; (4) What can help providers instead of skipping/deferring topic?; and (5) What aspects of the transition model have worked?
SNPCP providers identified the transition tools as helpful, especially with older patients. Providers indicated that they were having transition conversations with some patients but not others, believing transition to be an important topic and a topic worth making time for with patients aged 18 years and older. Providers reported that the tools were helpful to be able to refer to social workers, especially for follow-up with families about transition.
When asked about times that transition was missed or purposely deferred, SNPCP providers indicated that there were several reasons, primarily time and level of comfort with the topic. Providers indicated that the scheduled 30 minutes for well visits was already not enough time to address patients’ complex medical needs, including ASD, so adding the topic of transition to that list was overwhelming. In addition, the topic may have been deferred if there were more critical medical issues to be addressed at the time of the visit. If the patient was not yet 18, then the topic was often deferred. Likewise, the topic was deferred when a covering provider conducted the well visit instead of the usual pediatric primary care provider and did not know the patient and family well, or when the pediatric medical provider did not have experience with the topic and did not want to be the first person to discuss transition with the family. Some providers also reported they did not have the knowledge base or resources to address questions related to the mandatory fields related to guardianship and insurance eligibility and felt more comfortable introducing such topics as transition readiness and future goals. SNPCP providers suggested preference for longer visits and having transition be social work-directed, rather than medical provider-directed.
Discussion
This quality improvement project successfully implemented a health care transition tool that was integrated into the EHR for youth with ASD within a medical home model. There was a notable increase in pediatric medical provider–directed conversations with patients and families about transition and an increase in social work contact and support for patients and families regarding transition. However, there are several areas for practice improvement.
Although SNPCP medical providers were prompted by the EHR to discuss transition in 100% of adolescent well visits, documentation recorded by medical providers indicated that these discussions occurred in less than half of the visits. Time continued to be identified by the SNPCP medical providers as a barrier to discussing transition despite the option of scheduling the patient for a transition visit (a 30-minutes appointment dedicated to transition-related discussions without a physical exam). Instead, designated transition visits were recommended by medical providers and scheduled by support staff only for patients who were 18 years or older for their final visit before transferring to an adult medicine provider.
The limited use of designated transition visits is an area for additional improvement. Future quality improvement projects should focus on increasing initial and ongoing buy-in of the health care transition process by pediatric medical providers, patients, and families. Establishing that transition discussions are associated with improved transition outcomes may promote buy-in and improved uptake of the designated transition visits. This could be done through research aimed at determining whether patients who receive transition resources as part of well visits or specific transition visits are more likely to successfully link to adult medical providers than patients who do not receive transition resources. In addition, involvement of adolescent patients and patients who have successfully transitioned to adult medical practices in both patient/family and medical provider training may help inform and improve transition practices.
Additional training and education with pediatric medical providers and support staff is needed to ensure that designated transition visits are scheduled throughout adolescence and prior to age 21 so that patients and their families are being provided with comprehensive and coordinated transition care over time. Pediatric medical providers were most likely to discuss transition with patients who were 18 years and older, rather than starting the discussion at the recommended age of 12. Also needed is ongoing education and support for the patient and family to promote engagement in the transition process and development of self-advocacy skills that empower the youth with ASD to direct his own transition plan. Parents whose children were nonverbal or had significant cognitive impairments typically stated that meetings between providers and patients without parent present were not applicable. This suggests that both families and providers may need training regarding how to communicate and promote independence more directly with nonverbal patients or those with significant cognitive impairments in order to foster self-advocacy for this important segment of the ASD community.
Within the medical home model, social workers may be a more integral part of the care team than in a traditional pediatric practice. The SNPCP medical providers often deferred transition discussions and assistance to the social workers. Informal feedback suggests that some patients and families feel more comfortable when transition discussions are led by medical providers. As families are inclined to transfer care to adult medical providers when they believe that the pediatric medical provider also believes that this is best for the patient, our findings suggest more work is needed to increase the knowledge and comfort of pediatric medical providers related to transition. Within traditional pediatric practices where there is at best limited access to social workers, it may be even more important to ensure training and engagement of the medical provider to discuss transition and be knowledgeable about transition resources. Nevertheless, additional research into the feasibility of and patient response to social work–directed transition care, and direct comparison of quality of social work versus pediatric medical provider transition discussions would be beneficial.
Finally, increased partnership with adult medical providers is needed, as it was difficult for both pediatric medical providers and social workers to identify adult medical providers able and willing to assume the care of young adults with ASD. The Extension for Community Healthcare Outcomes (ECHO) approach of training and consultation is one example of a promising model for addressing training needs and potentially expanding the pool of adult primary care providers skilled and comfortable in working with patients with ASD (Mazurek et al., 2016; Sohl et al., 2017). ECHO uses telehealth to provide training and consultation from experts to promote best practices and to build capacity among primary care participants (Sohl et al., 2017). Within an ECHO model, for example, experts could include a team of pediatric and adult developmental, medical, and mental health providers along with self-advocates and caregivers who consult with and mentor adult primary care providers.
The transition tools and resources for youth with ASD and their families continue to be refined within the SNPCP based on the findings from this project. There are opportunities for future research on health care transition that could be informed by the findings from this work. First, the resources developed for youth with ASD may be beneficial for youth with other special health care needs, and future work could test the utilization of these resources within other special needs populations. Second, exploration of the individual impacts of the different components of this Transition Tool (i.e. medical provider template, social worker template, resource guides) would aid in the refinement of the tool. Identification of the highest impact interventions directed at the medical provider as well as those directed to patients and families will be particularly useful to guide implementation within low-resource primary care practices. For example, it would be helpful to determine whether families who participate in transition training are more likely to request and/or receive transition information from their health provider. Dissemination of these findings and sharing the tools developed for this project is a priority to assist other pediatric primary care practices in improving health care transition and ensuring all patients receive timely and comprehensive transition services.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported in part by the New Jersey Department of Health, Governor’s Council for Medical Research and Treatment of Autism Medical Research Council (Grant No. CAUT16MED003).
