Landscape of healthcare transition services in Canada: a multi-method environmental scan

Abstract

Background

Poorly supported transitions from pediatric to adult healthcare can lead to negative health outcomes for youth and their families. To better understand the current landscape of healthcare transition care across Canada, the Canadian Health Hub in Transition (the “Transition Hub”, established in 2019) identified a need to: (1) describe programs and services supporting the transition from pediatric to adult healthcare across Canada; and (2) identify strengths, barriers, and gaps affecting the provision of transition services.

Methods

Our project included two iterative steps: a national survey followed by a qualitative descriptive study. Service providers were recruited from the Transition Hub and invited to complete the survey and participate in the qualitative study. The survey was used to collect program information (e.g., setting, clinical population, program components), and semi-structured interviews were used to explore providers’ perspectives on strengths, barriers, and gaps in transition services. Qualitative data were analyzed using the Framework Method.

Results

Fifty-one surveys were completed, describing 48 programs (22 pediatric, 19 bridging, and 7 adult) across 9 provinces. Almost half of the surveyed programs were in Ontario (44%) and most programs were based in hospital (65%) and outpatient settings (73%). There was wide variation in the ages served, with most programs focused on specific diagnostic groups. Qualitative findings from 23 interviews with service providers were organized into five topics: (1) measuring transition success; (2) program strengths; (3) barriers and gaps; (4) strategies for improvement; and (5) drivers for change.

Conclusions

While national transition guidelines exist in Canada, there is wide variation in the way young people and their families are supported. A national strategy, backed by local leadership, is essential for instigating system change toward sustainable and universally accessible support for healthcare transition in Canada.

Background

Internationally, increasing numbers of youth with chronic conditions and special healthcare needs are living well into adulthood and will be required to transition from pediatric to adult healthcare [1,2,3,4]. This transition is intended to be a purposeful process that includes individualized planning, coordinated transfers of care, and secure attachment to adult services [2, 5, 6]. For youth with chronic health conditions, the transition process is often fraught with many gaps and barriers, including ineffective communication and coordination; poor care continuity; inadequate access to resources; and lack of patient, caregiver, and care provider knowledge [1, 7,8,9,10,11,12,13,14,15,16]. When the transition process is not properly supported, youth can experience negative outcomes, including poor access to healthcare services, missed appointments, issues with treatment adherence, increased healthcare utilization, and health deteriorations [1, 15, 17,18,19,20,21,22,23,24]. Furthermore, research suggests that these risks may be even more pronounced for specific populations, such as youth with medical complexity [9, 20, 25, 26].

Despite the development of Canadian guidelines for the transition from pediatric to adult health care in 2016 [5] and a renewed call for action in 2022 [6], many jurisdictions in Canada still lack a targeted approach to address the multifaceted issues that emerge during the transition process [6]. The national guidelines developed by the Canadian Association of Paediatric Health Centres (CAPHC) [5] provide 19 person centred, clinical, and system level recommendations. These recommendations cover several areas including the need for a youth-centred approach, the development of an individualized plan, and the requirements for ongoing transition education for all groups. The Canadian Paediatric Society’s [6] call for action builds on the CAPHC guidelines with six recommendations, including a call for program funding and physician compensation for transition work, a need for collaboration between pediatric and adult healthcare providers, and a stepwise plan to increase youth autonomy (when possible) that includes flexible age cut-offs between pediatric and adult care.

The Children’s Healthcare Canada Health Hub in Transition (the “Transition Hub”) [27] is a national group of over 225 youth, caregivers, researchers, and clinicians—with coast-to-coast representation—who share the common goal of bridging the gap between current practices and evidence-based recommendations on healthcare transition [5]. We aim to accomplish this goal using a non-categorical approach (i.e., not condition specific), as much of the current research in transition is limited to specialty-specific approaches [6, 18, 28,29,30,31], despite the similarities in transition-related experiences across diagnostic and illness groups [32]. At the inaugural Transition Hub meeting in December 2019, Hub members identified that an environmental scan of Canadian transition programs was a top priority for advancing a national approach to transition. To carry out the environmental scan, we formed a multidisciplinary subcommittee of youth, caregivers, clinicians, and researchers, including the authors of this article. The aim of our project was to: (1) describe the current landscape of programs, services, and resources to support the transition from pediatric to adult healthcare across Canada; and (2) identify strengths, barriers, and gaps affecting the provision of transition services and supports in Canada.

To our knowledge, there are no published environmental scans of programs supporting the transition from pediatric to adult healthcare across Canada. Furthermore, there is a paucity of qualitative evidence on providers’ perspectives on transition that spans multiple Canadian provinces/territories and diagnostic groups [33]. Findings from this scan will support the Transition Hub’s efforts to understand the state of transition programs in Canada, as well as contribute to the development of improved resources to better support youth, families, and health and social care providers during the challenging transition process.

Methods

Using a multimethod approach [34], we conducted this project in two phases: (1) a national survey identifying characteristics of transition programs across Canada; and (2) a qualitative descriptive [35, 36] study exploring providers’ perspectives on current strengths, barriers, and gaps affecting the provision of transition services and supports among their respective programs.

Qualitative descriptive studies can provide a comprehensive summary of an issue or event in its everyday, real-world context. As a descriptive methodology, the aim is to provide an accurate accounting of events and the meanings participants attribute to those events [37]. This type of research design is particularly useful for obtaining practical answers to questions relevant to clinicians and policy makers.

Sample and recruitment

The sample included key informants who were involved in the delivery of programs across Canada focused on the transition from pediatric to adult healthcare. As this was an exploratory study, we broadly defined “program” to include not only distinct programs, but also other services or resources aimed at supporting transitions to adult healthcare. For both the survey and qualitative study, we aimed to recruit participants from pediatric, adult, and primary care settings across Canada.

Sample size in qualitative research can be determined by methodological norms; researcher judgment and experience; and the quality and adequacy of the data in answering the research question [36, 38]. For the qualitative study, we aimed to recruit 20–30 service providers from across Canada. Based on researcher experience and the resources available for this study, we expected that this sample size would be small enough to allow for in-depth analysis, while being large enough to address the research aims and provide a rich and novel understanding of the phenomenon [38].

For the survey, participants were recruited through the Canadian Transition Hub mailing list via self-referral and snowball recruitment methods. Survey participants who agreed to be contacted for a follow-up interview were then invited by email to participate in the qualitative study.

Data collection

The survey and interview guide were developed through multiple rounds of feedback, revisions, and expert consensus by members of the Environmental Scan subcommittee of the Transition Hub, including the authors of this paper, youth/family members with lived experience, researchers, and clinicians. The survey collected program information and was administered through REDCap between October 2020 and June 2022. Between October 2021 and June 2022, a research assistant (AKS) conducted, recorded, and transcribed the interviews using Zoom videoconferencing and live transcription software. AKS then checked and de-identified the transcripts. All data collection methods (surveys and interviews) were offered in English and French.

Data analysis

Quantitative data were analyzed using descriptive statistics, and open-ended survey questions were coded to identify transition interventions. Information about the same program reported by different participants was combined for data analysis. Qualitative interview data were analyzed in NVivo by two research team members (LL and AKS) using the Framework Method [39]. A primary analytical framework with tentative category descriptions was proposed based on the interview questions and research aims. A secondary analytical framework was developed based on the Health Care Transition Research Consortium’s Health Care Transition Model (HCT Model) [40]. We selected this model because it includes the health care system, regional agencies, and regulatory environments as important components of transition, which aligns with our primary focus of exploring strengths, barriers, and gaps in health care services. As an initial step, LL and AKS independently coded two transcripts, after which the analytic framework was revised, and then further refined throughout the analysis process (Table 1). For example, within the HCT model, we decided to focus our analysis on the environmental and healthcare system domains.

Table 1 Framework for qualitative analysis

Ethical considerations and rigour

For the first phase of the project (survey), our local ethics board confirmed that ethical approval was not needed to collect information on program characteristics. For the second phase of the project (qualitative study), ethical approval was obtained from the Hamilton Integrated Research Ethics Board (project #12846) in July 2021. All interview participants were provided with a link to view the participant information sheet online, and consent was obtained electronically using REDCap. While formal member checking was not done, the preliminary analysis was reviewed by the full study team, including youth, clinicians, and researchers. Their unique perspectives, assumptions, and experiences contributed to the final interpretations presented in this article. See Additional File 1 for survey questions and interview guide. Reporting of the qualitative component of this project was guided by the Standards for Reporting Qualitative Research (SRQR, Additional File 2).

Survey results

Fifty-one participants completed the survey (English, n = 47; French, n = 4). They described 48 transition programs, services, and resources across nine Canadian provinces (Table 2). Participants were program managers/administrators, program leads, and care coordinators/patient navigators. Clinical roles included physicians, nurses, social workers, occupational therapists, pediatric dentists, and a dietician and family counsellor (Table 3). Of the 48 programs, 39 (81%) reported having dedicated personnel to support transition, and 16 (33%) had been evaluated. There was a wide range of transition interventions that focused on: (1) transition processes and care continuity; (2) self-management; (3) life skills, autonomy, and coping; and (4) care delivery approach.

Table 2 Program Location by Province

Table 3 Participant roles

Transition processes and care continuity

Transition interventions were often aimed at preparing youth and their families for transition by creating a better understanding of transition processes. Programs offered general information, tools, and resources on transition, as well as individualized navigation support and consultation for youth, parents, and providers. Written transition plans and medical summaries (e.g., the 3-sentence summary) were a means of supporting care continuity by facilitating information transfer to adult and primary care providers.

Self-management

Management of physical and mental health involved increasing knowledge about specific medical conditions and building skills to self-manage symptoms and disease activity. Skills in self-management included how to refill prescriptions, book appointments, communicate with adult providers, and self-advocacy. Self-management skills and transition readiness were frequently assessed using the Transition Q [41] and ON TRAC [42] questionnaires.

Life skills, autonomy, & coping

Life skills were related to activities of daily living, social life, and recreation, as well as employment and post-secondary education. These skills were discussed and developed through education webinars, workshops, youth mentorship, and coaching approaches. Programs also focused on mental well-being and provision of psychological support from social workers, psychologists, and through peer-support groups.

Care delivery approach

Lastly, some programs adopted care delivery approaches specifically aimed at supporting transitional-aged youth, including youth-focused or combined pediatric-adult clinics and programs. Table 4 provides a summary of the frequency, by program, that each transition intervention was reported in the open-ended survey responses. Specific program details, including clinical population, setting, and program description are provided in Table 5.

Table 4 Transition interventions reported by Programs

Table 5 Program characteristics. Programs are categorized into three groups: (1) Pediatric programs: only provide services up to the typical age of transfer (18 or 19 years, depending on jurisdiction); (2) bridging programs: provide services that span the typical age of transfer (includes both pediatric and adult healthcare institutions); (3) adult programs: only provide services after the typical age of transfer

Qualitative findings

Twenty-three transition providers from 22 unique programs, 19 organizations, and 6 provinces completed interviews. While both French and English interviews were offered, all interviews were completed in English. Qualitative findings were organized into the following five topics: (1) “measuring transition success” encompasses participants’ views on what defines a good transition and how transition success should be evaluated; (2) “program strengths” describes what is currently working well to support transition within the participants’ programs; (3) “barriers and gaps” includes barriers that providers face in supporting transition, as well as unmet service needs faced by youth and families during transition; (4) “strategies for improvement” entails concrete actions or interventions that have the potential to improve current transition services; and lastly, (5) “drivers for change” examines the underlying mechanisms that are needed to spur more widespread changes to support transition.

Measuring transition success

Participants emphasized the importance of evaluating transition success, which was seen as valuable for both assessing youth readiness for transition, as well as monitoring program effectiveness. Participants described indicators of successful transition ranging from clinically relevant or health-related outcomes (e.g., care continuity, care satisfaction, self-management skills and knowledge, indicators of physical and mental health) to broader themes of developing adult competencies (e.g., general life skills, residential autonomy, independence, education, employment). For example, Participant 19 spoke of measuring transition success through clinical indicators:

“I think a large component of it is patient satisfaction and confidence throughout the process. So that they know who to call. They don’t feel lost. They’re not confused. They never have a gap in time, where they have no one who’s kind of taking care of them.”

On the other hand, Participant 15 emphasized non-clinical elements:

“For me for successful is beyond the medical—it’s looking at all aspects.”

Participants also noted that transition is gradual and should be measured by both process and outcome indicators. Participant 1 shared that “there’s no one size fits all. But definitely, we would like to see progress in kind of a minimum level of, you know, acquisition of knowledge and self-care skills.” Setting and meeting individualized goals over time can also show progression towards transitioning to the adult system, and this progress should be captured in measures of transition success. Overall, a successful transition is multifaceted and should be evaluated using a holistic and lifespan approach.

Program strengths

At the practice level, some participants described the advantages of having a collaborative, intrinsically motivated team to share transition-related responsibilities within their program. Others spoke of the importance of having a designated person, such as a transition coordinator, dedicated to supporting youth and families. Transition planning with youth and families was facilitated by offering flexible options for care delivery and communication, as described by Participant 17:

“Our groups run at the time that are best for the youth, including weekends…We’ve also switched our communication modes with them, because they don’t do emails, or very little. They do messenger or Instagram.”

Specific program features were also viewed as strengths, such as care delivery models focused on overlap of pediatric/adult services: “I think doing our combined clinic has been helpful because they put a face to a name. They meet somebody from the adult side and that certainly makes them a lot more comfortable” (Participant 23). Strengths-based approaches to transition planning and goal-setting, and additional time during appointments to address non-health related concerns were also commonly endorsed program strengths.

At the organizational and healthcare system level, some participants attributed the success and sustainability of their programs to transition being valued and supported across all levels of the organization: “We have very strong support from all levels of management” (Participant 8). Institutional or government resources for transition services was also viewed as essential, as was organizational support for meaningful family and youth leadership in the design of transition services:

“We have a really strong partnership with all of our family leaders and our youth leaders, and they help inform us every step of the way” (Participant 14).

At the environmental level, all participants acknowledged the value of cross-sectoral collaboration to address the multifaceted needs of youth and families during transition. For example, Participant 17 shared that “linking up and partnering up with a variety of community organizations” was working well in their program. In particular, the potential for synergistic partnerships between the health and education systems was highlighted:

“We work together collaboratively to do a post-secondary program for students with physical disabilities who are making that leap into college” (Participant 11).

Barriers and gaps

At the practice level, a common barrier was the lack of engagement and awareness among healthcare providers of the importance of transition and the availability of existing transition supports. Participant 10 shared that “one of the things that we’d like to do is to see if we can engage some of our adult partners or to do some sort of community partners sort of piece…but we haven’t been able to get any traction on that.” Participants also reported that healthcare providers often did not feel prepared to support non-health-based needs, such as employment and education, or lacked training in caring for adults with complex healthcare needs:

“I think there’s a lot of gaps in terms of knowledge and how to appropriately care for these youth” (Participant 16).

At the healthcare system level, lack of resources, in the form of funding, staffing, or time, was frequently reported as a barrier. Resource constraints made it difficult for providers to dedicate time towards transition and sustain services long-term. Remuneration structures were a barrier when providers were not compensated for the additional time required for providing transition support. For example, Participant 18 described how inconsistent funding has led to a lack of continuity in transition services over the years:

They develop a program, which our hospital has done a couple times, and they support a year of transition care. And then, the funding is over at the end of the year, and everything just goes away. And then two years later, maybe we’ll try to pick it up, but it’s with a new person. So, there’s not a lot of continuity, and I find that is a huge barrier for our kids.

Additionally, the use of multiple models of service delivery across different programs can pose challenges to implementing organization-wide standard measures or guidelines, highlighting the need for frameworks that can be tailored to different populations and care contexts. Specific gaps in services for transition-aged youth included: insufficient social work and mental health services; decreased availability of occupational therapy and physiotherapy in the adult system; waitlists for adult services resulting in care delays; and lack of a centralized platform for families to find information.

Environmental and societal factors related to accessibility and equity also posed barriers to providing transition support. These factors included burdensome travel requirements to access services, lack of access to or poor engagement in virtual care, and language barriers, as voiced by these participants: “many, many, many of our families live in remote areas” (Participants 7), and “most of [our patients] are refugees or immigrants—about 98% of them don’t speak English” (Participant 18). Participants also shared that equity-deserving groups, such as youth with developmental disabilities or medical complexity, experience the greatest gaps in services and are often underrepresented in clinical and research initiatives:

“I have a large amount of youth that have developmental disabilities, so a large portion of them can access technology, but then there’s also that portion that can’t access technology, at least independently” (Participant 7).

Strategies for improvement

Within the healthcare system, the most frequently suggested strategy was to employ dedicated personnel focused on transition (e.g., transition coordinators), particularly in the adult system: “I feel like we’re missing some players, maybe, in the adult world as far as a coordination type, or coordinator role” (Participant 9). Strategies focused on care delivery included: embedding and standardizing transition practices across an organization; expanding existing transition programs; providing overlap between pediatric and adult care; implementing policies to support flexibility in the age of transfer; streamlining care logistics (e.g., referrals); and tailoring services to youth preferences. For example, Participant 1 advocated for transition to be “something that is embedded in anyone who is looking after a youth with a chronic condition in any way,” while Participant 3 shared feedback from their patients on the value of joint pediatric-adult appointments:

“We’ve heard from patients that what would be a really nice kind of way to do the handover is to have their final appointment with their pediatric team be their first appointment with us [(the adult team)].”

In the environmental domain, participants suggested building partnerships and communities of practice, such as the Transition Hub, focused on “bringing [resources and knowledge] together and making it accessible to one another” (Participant 3). Not only do these networks allow youth, caregivers, researchers, and clinicians to exchange resources and lessons learned and work collaboratively toward common goals, but the sense of community also helps individual providers feel more connected and motivated to implement local changes. Education and training—for youth, families, and providers—to increase awareness of transition resources and processes was also highly endorsed. Lastly, a centralized platform for families and providers to connect and find information related to transition (e.g., employment, education, housing/independent living, healthcare) was seen as an essential, but missing, resource: “We don’t have yet a centralized place where parents can find their information or youth can find their information or connections that are readily made between a network of various actors working in transition” (Participant 17).

Drivers for change

In addition to having feasible, concrete strategies for improvement, it was reported to be essential to have the motivation and drive for change. The most common drivers for change identified by participants were youth and family stories and motivated transition champions, as highlighted by the following two participants:

“I think families are often a driver of change, which made my centre and my director pay attention because…when we did a family survey…[transition] was one of the top five areas of interest identified by families.” (Participant 9).

“The reality is that most of the practice changes that I have seen in transition, come from champions, so there have to be sort of people in the system, who recognize that this is a problem and take it on and run with it and advocate for it.” (Participant 19).

These messages emphasize the critical role of collaborative advocacy in securing resources for transition.

Research and quality improvement were also reported as essential for inspiring and justifying change. Participants spoke of the need for program evaluation and consensus on quality indicators for transition, including longitudinal, quantitative data to evaluate the long-term effectiveness of transition services and programs. Participants felt that more research on evaluating transition could provide powerful evidence for funding bodies to support the expansion of transition services.

Beyond factors that intrinsically motivate providers to change their practice, participants emphasized the need for external drivers executed through healthcare policy. External drivers that were identified include provincial or national standards of care, funding and resources for transition, hospital accreditation criteria, and financial incentives for providers and healthcare organizations. Participant 1 stressed the importance of “institution-wide support…that values and legitimizes transition as a standard of care,” and suggested that transition “should be part of the hospital accreditation process.” Meanwhile, Participant 10 reflected that “there is probably a piece of revenue generation, especially among family physicians in terms of how do you support them to be able to bill for…transition.” Furthermore, some participants believed that pressure from broader society is needed, and they emphasized the importance of shifting societal perceptions of disability and framing support for transition as an “important societal need and benefit as part of preventative health care” (Participant 3).

Discussion

We describe the current landscape of Canadian programs, services, and resources to support young people in their transition to adult healthcare. Whereas Grant and Pan previously compared five transition programs across Canada [43], our survey, which reports on 48 transition programs from nine Canadian provinces, reflects the significant expansion of Canadian transition services and programs over the past decade. Additionally, while Splane and colleagues previously explored providers’ experiences of healthcare transition in New Brunswick and Nova Scotia [33], other Canadian studies have been limited to a single province. To our knowledge, this environmental scan is the first study to examine providers’ perspectives (n = 23) on transition across Canada. We found that most of the surveyed programs are based in hospital (n = 31/48, 65%) and outpatient (n = 35/48, 73%) settings. The qualitative findings offer insights on service providers’ perspectives regarding: what constitutes a successful transition, program strengths and barriers, concrete strategies for improvement; and underlying mechanisms for system change.

Notably, some ideas surfaced under more than one topic. For example, some participants described dedicated personnel, flexible care delivery, and overlaps in care as “strengths” of their individual programs, while others voiced similar ideas as “strategies” that they were either working toward or advocating to be implemented on a larger scale. Likewise, participants suggested several “drivers for change” that reduce “barriers” and support “strategies” that were identified (e.g., national standards to improve provider awareness; financial incentives to address funding barriers and support dedicated personnel). We draw attention to these recurrent themes; the repeated emphasis gives credence to their potential as targets for future interventions and policies to support healthcare transition in Canada.

Accessibility of transition services

Increasing access to transition support is a pressing issue for healthcare systems [2, 6, 44,45,46]. Structural factors limiting healthcare access were identified as key barriers to providing transition support in this study, including extensive travel requirements, poor access to virtual care, language barriers, and limited healthcare funding and staffing. These continue to be ubiquitous issues within the Canadian healthcare system, and resource limitations have been reported as prominent barriers in other Canadian studies exploring providers’ perspectives on transition [33, 47, 48]. Findings also revealed that equity-deserving groups tend to face the most difficult transitions and experience the greatest gaps in services, which is consistent with other published literature [6, 9, 44, 45, 49, 50]. Furthermore, as most of the surveyed programs were condition-specific and lacked consistency in ages and populations served, gaps in services continue to exist for those who do not fit into specific program parameters, such as youth with rare diseases [51].

These findings underscore the importance of embedding transition into the practice of all providers who care for adolescents and young adults, including pediatric, adult, and primary care providers [5, 44, 52]. To support more universal access to transition support, transition interventions (e.g., transition preparation, system navigation, care models that ensure continuity) should be viewed as essential, not auxiliary, components of care. This shift in provider attitudes toward transition will help to reinforce strengths (e.g., transition being valued) and mitigate barriers (e.g., lack of provider engagement) identified in this study.

Local strategies to improve transition

While barriers and enablers of successful transitions have been widely discussed in the literature [1, 11, 13, 15, 25, 53, 54], our study reports novel findings on provider-identified, actionable strategies for improving transition, as well as drivers for practice change. The most commonly suggested strategy by participants in this study was to ensure the availability of transition coordinators or dedicated personnel to support transitions, echoing recent recommendations from care providers in Atlantic Canada [33]. Although most of the surveyed programs (n = 39/48, 81%) had dedicated personnel to support transition, qualitative findings revealed that relying on a single person to provide transition services could potentially lead to issues with sustainability. While the issue of long-term program sustainability has previously been raised in the literature [54], it has yet to be addressed through systemic solutions. Our qualitative findings emphasized the importance of organizational support for ensuring long-term sustainability of transition services and programs. Healthcare organizations can drive the uptake of existing recommendations and guidelines for healthcare transition through the implementation of organizational policies and standards, personnel support for transition, and mechanisms that enable tracking of transition interventions and outcomes (e.g., through electronic medical records).

A national approach to amplify practice change

Beyond individual organizations, more widespread practice changes are needed [55]. Patient, caregiver, and provider champions are essential for inspiring these changes. Furthermore, while intrinsic motivation can spark local initiatives, extrinsic motivators are needed to drive change at a system level [56]. These external drivers can include provincial or national standards for transition care [5, 52, 57], system-wide policies that promote flexibility (e.g., in the age limit for pediatric care) [6, 57, 58], transition indicators [59, 60] embedded into healthcare accreditation criteria to measure success and benchmarking, and financial incentives for providers and organizations to improve transition processes and better support youth transitioning to adult care [45, 61].

A national approach is critical to overcome systemic barriers and scale the current state of Canadian transition services beyond pilot and local programs and toward long-term sustainability and universal care access. To facilitate access to care, we propose that a next step is to establish a central platform maintained by the Transition Hub. The platform would provide up-to-date information on transition programs, services, and resources in Canada. The need for a central directory has frequently been identified in this study, as well as anecdotally: we as active members of the Canadian Health Hub in Transition are often consulted by researchers and clinicians, both internal and external to the Hub, to share information on transition programs to help guide the design and delivery of transition services. Findings from this study will also inform future directions for the Transition Hub, such as: (i) increasing uptake of national transition guidelines; [5] (ii) fostering synergistic collaborations to accelerate the spread and upscaling of practice innovations; and (iii) partnering with adult and primary care providers to advance a unified vision of transition care in Canada. Importantly, future efforts to improve the accessibility and quality of transition services should be made in partnership with youth and caregivers, including seeking their perspectives on service design and delivery.

Limitations

A limitation of this environmental scan is our reliance on the membership of the Transition Hub for recruitment. Although the Hub boasts over 225 members who are invested in healthcare transition issues (both professional and personal), with strong pan-Canadian representation, we acknowledge that there are transition programs not represented in the Hub that our recruitment efforts missed. However, a key strength is that we offered data collection in both English and French, effectively increasing the scope of our recruitment strategy. An additional limitation is that we did not elicit youth/family perspectives as part of data collection, thereby limiting the scope of the study findings. This limitation should be considered when interpreting implications for patients and families. While youth/family perspectives were not included in the data, the Environmental Scan subcommittee includes both youth and family members, who have been involved throughout the research process, including data analysis and interpretation.

Conclusions

Our study sheds light on the diverse landscape of Canadian transition programs, services, and resources, drawing from the insights of transition service providers from nine Canadian provinces. Findings underscore the multifaceted nature of successful transitions, highlight program strengths at various levels, and identify key barriers impacting healthcare access. Actionable strategies and drivers for change offer a roadmap for improvement, emphasizing the need for a national approach, supported by local leadership, to ensure sustainable, universally accessible transition support in Canada.