Stakeholder perspectives on implementing person-centered transitional care in congenital heart disease: the STEPSTONES-Implement project – BMC Health Services Research

Report on the Implementation of the STEPSTONES Transition Program and its Alignment with Sustainable Development Goals

Introduction: Advancing Health Equity and Quality Care

This report analyzes the implementation of the STEPSTONES transition program, a structured healthcare initiative designed to support adolescents with chronic conditions as they move from pediatric to adult care. The findings are evaluated through the lens of the United Nations Sustainable Development Goals (SDGs), particularly SDG 3 (Good Health and Well-being), SDG 10 (Reduced Inequalities), and SDG 17 (Partnerships for the Goals). The analysis identifies key facilitators and barriers impacting the program’s potential to ensure continuity of care and promote lifelong health for a vulnerable population.

1. Intervention Characteristics: Program Design and Contribution to SDG 3

The design of the STEPSTONES program is perceived as a significant facilitator in achieving SDG 3, which aims to ensure healthy lives and promote well-being for all. However, resource constraints pose a notable barrier.

• Facilitators for Quality Care (SDG 3):
  • The program is recognized as evidence-based, well-structured, and compatible with existing clinical practices.
  • It provides concrete, applicable tools such as the HEADDS psychosocial interview guide and person-centered transition plans, which enhance the quality of care.
  • Alignment with current youth-adapted working methods in some clinics simplifies adoption and integration.
• Barriers to Sustainable Implementation:
  • Concerns were raised regarding the resource intensity of implementing all program components within existing clinical constraints.
  • Questions about the adaptability of the program to local contexts without compromising its core efficacy present a challenge to widespread, equitable implementation.

2. Outer Setting: External Factors Driving SDG 10 and SDG 17

External pressures and inter-institutional dynamics significantly influence the program’s implementation, highlighting the importance of partnerships (SDG 17) and the need to reduce health inequalities (SDG 10).

1. Demand for Improved and Equitable Care (SDG 10):
   • Strong external pressure from patients, families, and patient organizations underscores the societal demand for improved transition processes, aligning with the goal of reducing health inequities.
   • The program is seen as a crucial mechanism to mitigate health disparities, particularly for vulnerable youth with neurodevelopmental conditions or lower socioeconomic status.
   • National guidelines promoting integrated care provide external validation and support for the program’s objectives.
2. Challenges in Cross-Sectoral Collaboration (SDG 17):
   • A primary barrier is the inconsistent and often fragmented collaboration between pediatric and adult care systems. The lack of formalized structures and reliance on individual initiatives undermines the partnerships necessary for success.
   • A lack of clear accountability and coordination on the adult care side creates a critical gap in the continuity of care, directly hindering the spirit of SDG 17.
   • Logistical difficulties in coordinating between multiple teams and stakeholders further complicate the establishment of effective, sustainable partnerships.

3. Inner Setting: Organizational Capacity for Sustainable Health Systems (SDG 3)

The internal organizational environment, including culture and resources, is a critical determinant of the program’s success in building a resilient health system capable of delivering on SDG 3.

• Facilitating Factors:
  • Strong managerial support, dedicated resources, and a pre-existing culture of person-centered care create favorable conditions for implementation.
  • Clinics with established youth-focused routines view the program as a complementary enhancement rather than a disruptive change.
  • The program’s structure resonates with the professional values of nursing staff, empowering them with tools to address complex patient needs.
• Organizational Barriers:
  • Underutilization of specialist nurses, whose roles are often limited to administrative tasks, prevents the full realization of their capacity as care coordinators.
  • The absence of formalized routines for transitional care makes implementation dependent on individual staff motivation, leading to inconsistent application.
  • A siloed operational structure within clinics, with limited communication between teams, restricts collective learning and standardization of best practices.
  • Middle managers responsible for implementation often lack the formal authority to allocate necessary resources, creating a significant bottleneck.

4. Characteristics of Individuals: The Human Element in Achieving Health Goals

The knowledge, attitudes, and engagement of individual healthcare professionals are pivotal, acting as both powerful drivers and potential impediments to progress.

• Facilitators:
  • The presence of highly motivated “local champions” among nurses and physicians has been crucial for raising awareness and driving the transition agenda forward, even without formal structures.
  • Strong personal commitment among staff to the health and well-being of adolescents serves as a foundational support for the program.
• Barriers:
  • Resistance from some physicians regarding the scope of nurses’ roles in sensitive conversations (e.g., mental health, sexuality) can undermine inter-professional collaboration and program fidelity.
  • A sense of uncertainty among some trained nurses about their authority to fully enact their roles can limit their effectiveness.

5. Implementation Process: Strategic Planning for Long-Term Impact

The strategic approach to implementation is fundamental to embedding the program into routine practice and ensuring its long-term contribution to health outcomes.

1. Successful Implementation Strategies:
   • Formal anchoring of the program with both staff and management leads to better integration into daily clinical workflows.
2. Identified Implementation Gaps:
   • The absence of a clear, clinic-wide implementation strategy results in reliance on fragile, individual-led initiatives that are not sustainable.
   • Participants identified a critical need for clearer leadership support, established routines for collaboration between pediatric and adult care, and dedicated roles (e.g., a transition coordinator) to ensure program continuity and success.

Analysis of Sustainable Development Goals (SDGs) in the Article

1. Which SDGs are addressed or connected to the issues highlighted in the article?

1. SDG 3: Good Health and Well-being

   The article’s central theme is the implementation of the STEPSTONES transition program, a healthcare intervention designed to ensure continuity of care for adolescents with congenital heart disease (CHD) as they move from pediatric to adult services. It directly addresses the need for structured, person-centered, and high-quality healthcare to manage a non-communicable disease and support the psychosocial well-being of young patients. The discussion on tools like the “HEADDS (Home Education Activities Depression Drugs Sexuality) psychosocial interview guide” further reinforces the focus on both physical and mental health.

2. SDG 10: Reduced Inequalities

   The article explicitly identifies inequalities in healthcare access and outcomes. It states that the transition process is “particularly vulnerable for youth with neurodevelopmental conditions or lower socioeconomic status.” It further suggests that a structured program like STEPSTONES is necessary to “mitigate health inequities,” ensuring that all adolescents, regardless of their personal circumstances or disabilities (like ADHD), receive adequate support and are not left behind in the healthcare system.

3. SDG 16: Peace, Justice and Strong Institutions

   The article highlights significant systemic and institutional weaknesses within the healthcare system. It describes barriers such as a “lack of coordination and clear accountability on the adult care side,” a “fragmented transition process,” and care teams “operating in silos.” The call for “formalized structures,” “strong managerial support,” and “established cross-level collaboration routines” is a direct appeal for building more effective, accountable, and integrated institutions capable of delivering consistent and reliable care.

2. What specific targets under those SDGs can be identified based on the article’s content?

• Target 3.4: By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being.

  The STEPSTONES program is designed to ensure uninterrupted and effective treatment for adolescents with CHD, a non-communicable disease, thereby preventing future complications and reducing the risk of premature mortality. The program’s focus on psychosocial support through tools like the HEADDS interview also directly contributes to promoting mental health and well-being among these patients.

• Target 3.8: Achieve universal health coverage, including financial risk protection, access to quality essential health-care services…for all.

  The article’s focus is on improving access to a quality essential healthcare service—namely, transitional care. The description of STEPSTONES as a “well-designed, evidence-based, and structured program” points to the goal of providing high-quality care. The identified barriers, such as fragmented processes and resource limitations, represent challenges to achieving universal access to this quality service for all eligible adolescents.

• Target 10.3: Ensure equal opportunity and reduce inequalities of outcome…

  The article reveals that without a structured system, the quality of transitional care “largely depended on the motivation and knowledge of individual staff members,” leading to unequal outcomes. By implementing a standardized program, the goal is to ensure that all adolescents, including the most vulnerable, have an equal opportunity to receive comprehensive support, thereby reducing health inequities.

• Target 16.6: Develop effective, accountable and transparent institutions at all levels.

  The article critiques the lack of institutional effectiveness, noting that “no one on the adult side who ties everything together” and that there is an “absence of formalized routines or infrastructure.” The call for a “designated transition coordinator,” clear managerial support, and established collaboration routines are all measures aimed at developing more effective and accountable healthcare institutions that can reliably manage the transition process.

3. Are there any indicators mentioned or implied in the article that can be used to measure progress towards the identified targets?

• Indicator: Implementation of structured, evidence-based transition programs.

  Progress towards Targets 3.4 and 3.8 can be measured by the adoption and implementation rate of programs like STEPSTONES. The article implies that the use of its specific components, such as the “person-centered transition plan” and “HEADDS interviews,” serves as a tangible indicator of quality service provision.

• Indicator: Existence of formalized collaboration and coordination mechanisms.

  The article contrasts clinics with “established routines and close working relationships” against those with “fragmented” processes. This suggests that an indicator for Target 16.6 would be the number or percentage of healthcare facilities with formalized, documented protocols for collaboration between pediatric and adult care departments, including scheduled joint meetings.

• Indicator: Provision of adapted care for vulnerable populations.

  To measure progress on Target 10.3, one could track the provision of tailored support for at-risk youth. The article mentions the need to “adapt yourself in this transitional work” for patients with conditions like ADHD. An indicator would be the rate at which vulnerable adolescents successfully complete the transition program compared to the general patient population, demonstrating that health inequities are being addressed.

• Indicator: Allocation of dedicated roles and resources for transitional care.

  As a measure of institutional effectiveness (Target 16.6), the article points to the importance of leadership providing “dedicated time and resources” and the need for a “designated transition coordinator.” An indicator of progress would be the percentage of clinics that have formally assigned and funded a transition coordinator role with the authority to implement the program.

4. Table of SDGs, Targets, and Indicators

Source: bmchealthservres.biomedcentral.com