Development and design of a Blueprint for structured transitional care in adolescents and young adults in the academic hospital setting

Abstract

Background and purpose

A generic, structured transitional care pathway dedicated to patients in the academic setting is currently lacking. This study aimed to identify the key factors influencing a successful transition from pediatric to adult care for adolescents and young adults and to develop a generic, hospital-wide Blueprint for transitional care in such settings, using intervention mapping as the guiding method

Method

A combination of literature review, focus groups, and semi-structured interviews was carried out, leading to a logical model of the problem in a situation where transition is poorly managed or when transitional care is absent in the academic setting. This model helped outline the behavioral objectives, determinants, and change goals, which were then transformed into practical applications. Key interventions were identified and integrated into a coherent Blueprint for transitioning from pediatric to adult healthcare. A Transition Programme Development Working Group and a Transition Patient Council have been involved in every step of the Blueprint's development.

Results

The Blueprint for structured transitional care promotes pediatric and adult collaboration through eight key interventions, including two joint consultations, one double-time consultation, and appointing a transition coordinator who annually prepares and updates individual transition plans.

Conclusion

Intervention mapping helped designing a structured, personalized Blueprint as an evidence based example for transitioning patients with rare and chronic conditions in an academic hospital. The Blueprint described in this article is currently being implemented and evaluated across six pilot departments. If proven effective, it can be disseminated more widely.

1. Introduction

Increasing numbers of young adults with a chronic condition – who were previously not expected to reach adult age – currently reach adult age. Consequently, more and more of these young adults transition from the pediatric healthcare system to adult healthcare.¹ In the Netherlands, more than 1.3 million adolescents and young adults (AYAs) live with a chronic condition. Each year, around 60,000 of them transition from pediatric to adult healthcare.² Van Hal and colleagues note that AYAs reported the current transition process to be poorly managed, leaving both them and their parents feeling unprepared for the transfer to adult healthcare.² Blum and colleagues have defined this transition as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems”.³ It is now widely recognized that transitional care should continue after transfer to adult healthcare.4, 5 Poorly managed transitions, or the absence of transitional care, can result in AYAs’ health status deterioration and eventually negative long-term health consequences along with poor adherence to treatment, missing appointments, being lost to follow-up, more frequent hospitalizations, or being more likely to visit emergency services, thereby raising healthcare costs.4, 6, 7

There is growing international recognition of the need for structured transition programs for all AYAs with a chronic condition. According to Mazur and colleagues, a successful transition process requires a personalized, developmentally appropriate, and psychosocially informed approach that is flexible, multidisciplinary, and coordinated.⁴ This process should begin in the patient’s early teens and continue for several years in adult care. Research indicates that such transition programs can enhance treatment adherence and satisfaction with care, as well as optimize health care utilization, ultimately fostering self-management skills, better disease-specific outcomes, and an improved quality of life.⁸ In a recent systematic review the outcomes of healthcare transition interventions were reported and the healthcare transition interventions were categorized according to the Six Core Elements of Health Care Transitions, an evidence-informed, structured healthcare transition (HCT) process.⁸ Among the 19 articles included in the review, 84 % found statistically significant positive outcomes resulting from a structured HCT process. Most studies focused on one condition, while 3 out of 19 studies assessed the outcome in several chronic physical or mental illnesses.⁸ None focused on AYAs with complex and rare diseases, the patients treated and followed in academic hospitals.9, 10 This specific groups require a more intensive approach compared to AYAs in secondary or primary care settings, because of their vulnerability regarding to both current and longterm health.¹¹

In the year 2018, approximately 750 AYAs with a chronic condition were discharged from pediatric healthcare in one of the largest academic hospitals in the Netherlands. While 202 of them (27 %) were referred to adult healthcare in a regional hospital, 488 (65 %) were effectively transferred to adult healthcare within the academic hospital, and 60 patients (8 %) were lost to follow-up. Three AYAs from the Youth Advisory Council who had already transitioned to adult healthcare shared their experiences. They felt their transition was less successful and noted, “Managing my own care at 18 and suddenly having to stand up for myself in adult care is quite difficult. There were times I felt alone during the initial period in adult care”. This aligns with findings in the literature that successful transition involves more than just being transferred and remaining in the healthcare system. It more importantly involves continuity of care, the transition experience of AYA’s (and their parents’), trust in healthcare providers, and treatment adherence.12, 13

All of the above has led us to the following research question: In the setting of an academic, tertiary care hospital, what factors contribute to a successful pediatric to adult healthcare transition program, and what interventions can enhance the quality of transitional care for AYAs with chronic and rare conditions in this tertiary care setting?

The aim of the study was to identify key factors influencing a successful transition from pediatric to adult healthcare and – based on the findings – develop a generic, hospital-wide Blueprint for transitional care in academic hospitals, designed to prevent loss to follow-up and therapy non-adherence after transfer.

2. Methods

The study was a mixed methods study guided by the Intervention Mapping (IM) approach (Fig. 1).¹⁴ IM is a stepwise method that is utilizing an iterative approach and combines theory, literature findings, and information collected from relevant stakeholders. IM assists in the development and evaluation of complex interventions with the aim to improve their quality and feasibility. The IM approach employs six steps: 1) logic model of the problem; 2) program outcomes and objectives; 3) program design; 4) program production; 5) program implementation plan; and 6) evaluation plan.¹⁴ This study employed steps 1–4.

Fig. 1.

The 6 steps of intervention mapping.¹⁴

2.1. Logic model of the problem (step 1)

This step aims to understand the nature, extent, and cause of the health problem in a situation where transition is poorly managed or when transitional care is absent. This is done by identifying the health needs and related determinants. The outcome is a logic model of the problem, developed using the first four phases of the Precede-Proceed model (PPM), which facilitates systematic problem analysis.¹⁵ To gain insights into health needs and related determinants, a mixed method approach was used, combining literature review and field research. PubMed was searched for articles addressing unsuccessful transitions, the impact of unsuccessful (or non-structured) transition on health and quality of life and determinants of (un)successful transition. The articles were screened by 2 researchers (VB and JCE), and subsequently discussed until the mutual decision which articles to include (Appendices: Fig. A1 literature selection process).

The field research involved a patient focus group meeting, supplemented by semi-structured interviews with the AYAs who chose not to participate in the focus group meeting. A focus group meeting is a structured discussion with a small group of AYAs, aimed to gather insights and feedback from the participants. Thirteen AYAs aged 16–23 years, with various chronic conditions (e.g. brain tumor, short bowel syndrome, Turner's syndrome, hemophilia, inflammatory bowel disease, HIV) treated at the academic hospital were invited by their treating medical or nurse specialists to join the focus group. Those who opted out were invited to participate in individual semi-structured interviews. Eight AYAs participated in the focus group meeting, two other joined an individual interview, and three declined. Additionally, semi-structured interviews were conducted with four medical and nurse specialists from both pediatric and adult healthcare settings, who were selected based on their experience with transitional care. For both the focus group meeting and the semi-structured interviews with AYAs and healthcare professionals a topic list was compiled (Appendices: A Topic list for the focus group meeting, semi-structured interviews AYA and semi-structured interview healthcare professionals). Topics covered in the focus group meeting and interviews are personal experiences, what is important for the participants regarding transition, behavior and environment and when is transition successful for the participants. Patients and healthcare professionals provided written informed consent before inclusion into the study.

The data from the focus group meeting with AYAs and interviews outcomes from both the AYAs and healthcare professionals were anonymized and transcribed by the first author (VB). Subsequently the data was coded and analyzed by two authors (VB and JCE) using a reflective and iterative process, with themes systematically identified. First the data of the interviews and focus group meeting was analyzed and coded, so themes could be identified.¹⁶ These themes were compared with the findings from the literature, so additional themes extracted from included articles were added. Subsequently the data of the interviews and focus group meeting was compared with the themes identified from the literature search.

2.2. Program outcomes and objectives (step 2)

Step 2 involves setting objectives for changes in behavioral and environmental factors that should lead to ameliorating the health problem. The logic model, along with the literature and field research results from step 1, served as a basis for defining the program outcomes, behavioral objectives, personal determinants, and change goals.

The latter three were addressed by the Transition Program Development Working Group, which included 4 medical specialists from pediatric and 4 from adult care, 4 nurse specialists from pediatric and 3 from adult care as well as a psychologist and an expert on healthcare transitions (AvS). Valuable patient input was provided by the Transition Patient Council consisting of 10 AYAs with various chronic conditions who had experienced transitional care or transfer within the academic hospital.

2.3. Program design (step 3)

Step 3 identifies the behavioral change methods that can be employed and explores how these can be transformed into practical applications to achieve the objectives described in step 2. The methods and practical applications of transitional care were identified through a literature search on PubMed for articles on transition programs and their effectiveness (Appendices: Fig. B1 Strategy literature selection step 3 Intervention Mapping). The search was limited for articles since 2015 and the following keywords were used:

• •Population: Adolescent and Young Adult with chronic condition
• •Intervention: Transition program; self-management; self-efficacy; transitional care coordination; joint consultation; parents; peers
• •Outcome: Transition success; medication or therapy (non)-adherence; follow-up; Quality of Life

2.4. Program production (step 4)

An overview of the practical applications (step 3, program design) per behavioral objective (as defined in step 2, program objectives) was created. From this overview, key interventions were identified. In step 4, all information was synthesized into a coherent Blueprint for structured transition from pediatric to adult healthcare. After the Blueprint was finalized, it was presented to the Working Group and the Transition Patient Council for validation.

3. Results

3.1. Logic model of the problem

The literature search yielded 24 relevant articles (Appendices: Table A1 overview included articles). Of the13 AYAs invited to participate in the focus group meeting, eight participated in the focus group, and two others in an individual interview. Two medical and two nurse specialists, representing pediatric and adult healthcare, participated in semi-structured interviews.

Following the first four phases of the PPM helped to create a logic model of the problem. The outcomes of the focus group and semi-structured interviews were analyzed and together with the findings in the selected articles categorized into themes within Health and Quality of life (Table 1), Behavior and Environment (Table 2), and Predisposing, reinforcing, and enabling factors for (successful) transition (Table 3). Themes were identified when a certain issue was reported by more than 1 participant. Next, themes derived from the field research were searched in the relevant studies. Also vice versa, if themes were identified from the relevant studies, this theme was also assessed in the outcomes of the interviews and focus group. The (common and separate) themes that were derived from the analysis of the focus group meeting, the interviews, and the main findings from the literature are summarized in the four phases of the PPM as shown in Table 1, Table 2, Table 3.

Table 1.

Phase 1 and 2 PPM: health and quality of life themes that are affected by unsuccessful transition according to the field research and literature.

Themes identified	Field research (citations of patients and HCP)	Literature support in: (patient groups)
Reduced physical and psychosocial wellbeing	“Because there was not much attention to how I could combine my chronic condition with my school and with friends, I felt a bit lost on that part. I had to do it all by myself.” (P1) “Because in adult care I will receive less attention as a person, I’m anxious to ask questions when I am struggling with things in my personal life.” (P2)	CHD,17 gut-brain interaction,18 IBD,19 JIA,20 T1D/CF/IBD21
Increased risk of morbidity and mortality		Liver disease22
Increase in symptoms or deterioration of physical health		CF,23 IBD,25 JIA,20 jCID,24 Liver disease22
Increase in emergency room visits, hospital admissions, and decrease in outpatient visits	“Yesterday, I saw a 27-year-old patient known with spina bifida. The patient visited the emergency room due to a complication. During the transition period the patient was told (or the patient understood) that he only needed to make appointments for health-related problems. Of course, for patients with a neurogenic bladder this is wrong Without regular monitoring, the risk of something going wrong during transition is high.” (HCP3)	gut-brain interaction,18 IBD,19, 25 jCID,24 SB,26 Sickle cell disease27

HCP = HealthCare Professional, P = Interview patient, CHD = Congenital Heart Disease, IBD = Inflammatory Bowel Disease, JIA = juvenile idiopathic arthritis, T1D = Type 1 Diabetes, CF = Cystic Fibrosis, jCID = juvenile chronic inflammatory systemic disease, SB

Table 2.

Phase 3 PPM: behavioral and environmental factors affecting transition success according to the field research and literature.

Themes identified	Field research (citations of patients and HCP)	Literature support in: (patient groups)
Therapy non-adherence	“Considering what matters to patients and how they can combine the chronic condition with their (social) life will enhance adherence to therapy.” (HCP4)	gut-brain interaction,18 IBD,19 JIA20
Loss to follow-up	“Trust in adult healthcare team is an important factor for preventing loss to follow-up.” (HCP3)	CHD,29 IBD,19 jCID,24 SB26
Reduced trust in new HCP	“On my second consultation, the adult provider changed the treatment plan, which made me feel uncertain. (P1) Trust in the pediatrician and the personal approach makes me feel seen and heard. This personal approach is not there in adult care.” (FGP1) “It will help to build trust when the pediatrician introduces me as the new doctor.” (HCP3)	AM and HD,30 DMD,31 HIV,32 IBD,33 Liver disease,22, 34 SB,35 Sickle cell disease,36, 37 various chronic conditions38
Differences in pediatric and adult healthcare systems	“In adult care, there is much less focus on how to combine my chronic condition with my daily life. This made me feel quite alone in this aspect at first.“ (P1)	DMD,31 gut-brain interaction,18 HIV,32 IBD,33 Sickle cell disease,36 various chronic conditions38
Parental overcautiousness	“My mom found it difficult to support me as best she could during the transition because her role changed so much.” (P1) “A constraining factor during transition are the parents. They are often unwilling or unable to let go.” (HCP3)	DMD,32 IBD,33 SB,39 various chronic conditions38

HCP = HealthCare Professional, P = Interview patient, FGP = Focus Group patient, IBD = Inflammatory Bowel Disease, JIA = juvenile idiopathic arthritis, CHD = Congenital Heart Disease, jCID = juvenile chronic inflammatory systemic disease, SB = Spina Bifida, DMD = Duchenne Muscular Dystrophy, HIV = Human Immunodeficiency Virus, AM = anorectal malformation, HD = Hirschsprung’s disease.

Table 3.

Phase 4 PPM: predisposing, reinforcing, and enabling factors for (successful) transition according to the field research and literature.

Themes identified	Field research (citations of patients and HCP)	Literature support in: (patient groups)
Knowledge of chronic condition	“When I went for an ultrasound, they asked things about my disease history which I did not know. I missed my mom during this appointment because she knows and can explain everything. I now know it is important that I know this myself, and it would have been nice if we had discussed this in the children’s hospital.” (P2).	AM and HD,30 CHD,17 HIV,32 IBD,19 jCID,24 liver disease,22, 24 liver transplant,40 SB,35 Sickle cell disease,37 various chronic conditions38
Strengthening self-management and self-efficacy	“And then it's rather awkward when you're sitting alone opposite a specialist in a new hospital. I thought at that moment: how am I going to advocate for myself?” (FGP4) “Thinking you know how to stand up for yourself is totally different from actually doing it when you are in adult care.” (P1) “Nurse specialists have an important role in strengthening self-management and self-efficacy, but [in my specialty] there are no nurse specialists in adult care at the moment.” (HCP4)	AM and HD,30 DMD,31 HIV,32 liver disease,22, 24 liver transplant,40 SB,35, 39 Sickle cell disease,36, 37 various chronic conditions38
Collaboration between HCP from pediatric and adult care	“Make sure that pediatric and adult HCP work together and interact with the patient and parents, so that the transition feels safer for me, and I feel engaged as a patient.” (FGP1). “Different policies between pediatric and adult care cause uncertainty for patients and their parents, and they affect trust.” (HCP4)	AM and HD,30 congenital abnormalities,41 DMD,31 gut-brain interaction,18 HIV,32 liver disease,34 SB,35 Sickle cell disease36
A personalized approach that engages AYAs in their transition	“I really missed support from the adult care HCP for combining my chronic condition with my social life.” (P1) “I think it is important that there is focus on my personal wishes and needs, because the condition I have can really affect my life.” (FGP2) “I pay attention to the personal wishes and needs in adult care, not only for the outcomes of care but also for the patient-HCP relationship.” (HCP3)	DMD,32 gut-brain interaction,18 liver disease,22 SB35
Support of the parents and guiding the parents in their changing role	“My parents were not involved in decision-making in adult care, while a lot of my day-to-day care still needs to be done by my parents.” (P1)	AM and HD,30 gut-brain interaction,18 IBD,33 SB,35 Sickle cell disease37
Contact with peers	“If I had had the chance to hear from peers how they had experienced this period or getting some tips, it would have been very helpful.” (P2 and FGP7) “It is helpful if AYAs notice they are not the only ones and that there are peers who have similar problems.” (HCP2) “I think in the vulnerable period of adolescence, AYAs will not listen to HCP, but will listen to peers.” (HCP3)	IBD33
Changes in health insurance		AM and HD,30 CHD,17 HIV,32 IBD,33 SB,35, 39 Sickle cell disease,27various chronic conditions38
Information about the transition process		liver disease,34 SB,35, 39 Sickle cell disease,37 various chronic conditions38

HCP = HealthCare Professional, P = Interview patient, FGP = Focus Group patient, CHD = Congenital Heart Disease, SB = Spina Bifida, jCID = juvenile chronic inflammatory systemic disease, HIV = Human Immunodeficiency Virus, IBD = Inflammatory Bowel Disease, AM = anorectal malformation, HD = Hirschsprung’s disease, DMD = Duchenne Muscular Dystrophy.

The first two phases of PPM yielded insights in the impact on health and quality of life after unsuccessful transition. Eleven of the included articles studied health outcomes or quality of life.17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27 There is some evidence that no or unsuccessful transition may lead to a higher adverse outcome after transfer including graft loss or death²² and that it may lead to an increase in inflammatory bowel disease (IBD)-related complications and surgical interventions.²⁵ Both the increase in symptoms and the increased risk of morbidity and mortality was not mentioned or addressed during the focus group meeting or the interviews. During the focus group meeting and the interviews, three AYAs mentioned that transition had affected their quality of life. They felt alone in combining their chronic condition with their social life and did not dare to discuss everything in adult care. Healthcare professionals (HCP) mentioned that transition can influence increased hospital admissions and quality of life (findings of field and literature search are summarized in Table 1).

The third phase provided insights in personal and environmental factors affecting transition success and this phase made clear that in addition to personal factors, environmental factors can also affect behavior.²⁸ Six of the included studies attributed therapy non-adherence and loss to follow-up to potentially ill-organized transition. 18, 19, 20, 24, 26, 29 This was confirmed by three of the four interviewed HCP. None of the patients in either the focus group or the interviews mentioned therapy non-adherence or loss to follow-up. Ten studies mentioned reduced trust in the HCP from adult care as environmental factor,22, 30, 31, 32, 33, 34, 35, 36, 37, 38 which was confirmed by both patients and HCP in the field research (findings of field and literature search are summarized in Table 2).

The fourth phase of the PPM provided insights in the predisposing, reinforcing, and enabling factors that affect behavior and environment. Key factors derived from both the literature and field research were disease knowledge, self-management and self-efficacy, collaboration between pediatric and adult healthcare teams, personalized approach, and guiding parents in their changing role. It is notable that contact with peers was mentioned by several patients in interviews and focus group as well as by HCP. However, peer contact was mentioned in only one study (findings of field and literature search are summarized in Table3). Eight of the included studies described changes in healthcare insurance as a key factor and five described information about the transition process as one of the key factors, while none of the respondents mentioned either of these two factors.

The PPM helped to design a logical model of the problem (Fig. 2). AYAs with chronic conditions are at risk of a) non-adherence to therapy; b) dropping out of the healthcare system and becoming lost to follow-up, and c) reduced trust in the new HCP. These risks may stem from differences between pediatric and adult healthcare systems, as well as insufficient preparation for the new roles required of both AYAs and parents.

Fig. 2.

Logical model of the problem.

3.2. Program outcomes and objectives

Various definitions of the effectiveness (or success) of transition or transitional care programs were found in the literature. Transition effectiveness can be measured through transition readiness, self-management skills and/or self-efficacy, healthcare utilization, knowledge of the disease, health-related quality of life and wellbeing, treatment adherence, and patients’ satisfaction with transitional care.1, 8 An international Delphi study pointed out eight key indicators of a successful transition (Fig. 3).⁴²

Fig. 3.

Eight key indicators of successful transition.⁴²

The Transition Program Development Working Group and the Transition Patient Council collaboratively formulated the main objective of the program as: empowering AYAs by helping them to develop self-management skills. Self-management skills would enable them to autonomously manage the chronic condition and to find a balance with daily living activities. The next step was to identify behavioral objectives for the AYAs, the HCP, and the parents. The first author (VB) made a proposal which was discussed and refined in two meetings with the Transition Program Development Working Group. After the working group had given its approval, the behavioral objectives were discussed and confirmed in one meeting with the Transition Patient Council. Three behavioral objectives were identified from the results of IM step 1: 1) To be actively involved in one’s transitional care, 2) To develop the responsibility to manage one’s health and disease, 3) To build trust in order to continue treatment and follow-up consultations after transfer to adult healthcare. Four personal determinants along with change goals were specified based on these objectives (Table 4). Additionally, single behavioral objectives were specified for respectively healthcare providers and parents: 1) Healthcare providers support AYAs in tailoring transitional care to personal needs, preferences, and values, 2) Parents support AYAs in developing self-management skills. Table 5 provides the corresponding determinants and change goals.

Table 4.

Objectives with determinants and change goals for AYAs with a chronic condition.

Objective	AYAs are involved in their transitional care	AYAs develop the responsibility to manage their health and care	AYAs build trust to stay in follow-up after transfer to adult healthcare
Personal determinant	Change goals	Change goals	Change goals
Knowledge	Describes the content of their transitional process	Describes their medical history and what their chronic condition entails	Explains why it is important to have continuity in their care and treatment
	Identifies what is expected of them in each phase	Identifies which skills they need to be responsible for their own health and care	Explains how the adult care system is organized
	Identifies who their regular contact is during their transition process		Identifies who their healthcare providers from adult care are
	Mention what to expect from their regular contact
Social influence	Describes how other AYAs experienced the transition and transfer and what was helpful for them in this process	Explains to their friends and family what it means to have their chronic condition and to combine it in their social and community life	Gets to know their healthcare providers from adult care
			Explain to their healthcare providers from adult care what is important to them in their care and daily life
			Mentions how other AYAs coped with the differences between the pediatric and adult care system
Self-efficacy	Expressing self-confidence regarding involvement in their own transition process	Expressing self-confidence regarding being responsible for managing their own health and care	Expresses confidence in their transfer to adult are
Self-management skills	Discusses their personal needs, preferences and values with their health care providers	Independently carries out conversations with their healthcare providers regarding their disease and health	Makes their own appointments with the healthcare providers and attends these appointments
	Establishes their personalized transition plan, together with their healthcare providers	Discusses with healthcare providers how combining their chronic condition in their daily life is going on and indicates if there are any difficulties in this.	Establishes that during the initial appointment, there is time and opportunity to talk about their disease and about combining their chronic condition in their daily life and what matters to them
	Evaluate the established personalized transition plan structural with their healthcare providers	Independently performs (medical) activities that are necessary regarding their chronic condition and health	Establishes if there are difficulties regarding differences between pediatric and adult are and talks about these difficulties with their healthcare provider
		Shows that they can ask for help from friends, family and healthcare providers when they have questions, concerns or uncertainties

Table 5.

Objectives with determinants and change goals for healthcare providers and parents.

Objective	Healthcare providers support AYAs in tailoring transitional care to personal needs, preferences, and values	Parents support AYAs in developing their self-management skills
Personal determinant	Change goals	Change goals
Knowledge	Mention the importance of personalizing transitional care and what this can contribute to transition success	Explain why it is important to stimulate their child to independently manage their health and care
	Describe how to actively and routinely tailor transitional care to AYAs’ personal needs, preferences, and values	Recognize which self-management skills are important for their child
Attitude	Are willing to personalize transitional care so it is appropriate to each AYA’s needs, preferences, and values	Express confidence to step back from taking responsibility for their child’s health and care
Self-efficacy	Actively and routinely tailor transitional care to AYAs’ personal needs, preferences, and values	Show that they can be involved in the background in their child’s consultations with healthcare providers
	Identify that information management systems help aligning transitional care with the AYAs’ personal needs, preferences, and values	Show they support their child in developing self-management skills

3.3. Step 3: program design

The literature search yielded 12 relevant studies (Appendices: Table B1 overview included articles with transitional care interventions and outcomes). Eight of these studies provided some evidence that transition programs which incorporate a combination of interventions have a positive effect on follow-up and therapy adherence.43, 44, 45, 46, 47, 48, 49, 50 However, the studies varied in their specific combinations of interventions and outcome measurements.

In collaboration with the Transition Program Development Working Group and the Transition Patient Council, change methods²⁸ were identified based on the included studies. These methods were then translated into practical applications aimed at the improvement of follow-up and therapy adherence (Table 6).

Table 6.

Change methods and practical application.

Determinant Change goals AYAs		Change method	Practical application
AYAs with a chronic condition
Knowledge
Describes the content of their transitional process		Information	Develop a transition program
			Information about transition program
Identifies what is expected of them in each phase		Active learning	Information about transition program describing what to expect at each moment
			Transition coordinator provides information about the transition process to the AYA
Identifies who their regular contact is during their transition process		Active learning	Transition coordinator who is regular contact for AYA during transition process
Mention what to expect from their regular contact		Active learning	Develop the role of the transition coordinator
			Information about transition program
			Information about what to expect from the transition coordinator
Describes their medical history and what their chronic condition entails		Information	Education of AYA about their chronic disease
			Education of AYA about medical history
			Education of AYA is multidisciplinary teamwork
Identifies which skills they need to be responsible for their own health and care		Active learning	Create an Individual Transition Plan with goals to develop self-management skills
			Training for AYAs about self-management skills
Explains why it is important to have continuity in their care and treatment		Information	Discuss disease-insight and risks with AYAs
Explains how the adult care system is organized		Information	Information how the adult care is organized (generic and disease specific information)
			Education of AYA about the differences between pediatric and adult health care system
Identifies who their healthcare providers from adult care are		Information	Get to know healthcare providers when still in pediatric (joint consultation)
			Warm handover with healthcare providers from both pediatric and adult care
Social influence
Describes how other AYAs experienced the transition and transfer and what was helpful for them in this process		Modeling	Peer support
			Information about how other AYAs experienced their transition
Explains to their friends and family what it means to have their chronic condition and to combine it in their social and community life		Assertiveness and resilience	Individual Transition Plan also focused on coping with chronic condition in daily life
			Discuss disease-insight and risks with AYAs
Gets to know their healthcare providers from adult care		Information	Joint consultation with HCP from pediatric and adult care before transfer
Explain to their healthcare providers from adult care what is important to them in their care and daily life		Assertiveness and resilience	Attention for personal needs, preferences and values during joint consultation and attention for what matters to AYA
Mentions how other AYAs coped with the differences between the pediatric and adult care system		Modeling	Information about how other AYAs coped with the differences between pediatric and adult care
Self-efficacy
Expressing self-confidence regarding involvement in their own transition process		Guided learning	Asking AYAs what matters to them
			Strengthen self-management and communication skills
Expressing self-confidence regarding being responsible for managing their own health and care		Guided learning Demonstration	Healthcare team is continuously informed about goals in ITP
			Integrate ITP in electronic patient record
Expresses confidence in their transfer to adult are		Modeling	Education adult care system and actively ask for concerns
			Peer support
			Get to know healthcare providers adult care when still in pediatric
			Warm hand-over
Self-management skills
Discusses their personal needs, preferences, and values with their health care providers		Guided learning	Individual transition plan coordinated by transition coordinator
			Standard formats to note personal needs, preferences, and values
Establishes their personalized transition plan, together with their healthcare providers		Goal setting	Use of validated questionnaires to establish ITP
			Transition coordinator
Evaluate the established personalized transition plan structural with their healthcare providers		Feedback	Healthcare team is continuously informed about goals in ITP
			Integrate ITP in electronic patient record
			Structural evaluation and adjustment of the goals set in ITP
Independently carries out conversations with their healthcare providers regarding their disease and health		Guided learning	AYAs practice talking to healthcare provider alone while still in pediatric care (parents are not present in consultation room); split consultation
Discusses with healthcare providers how combining their chronic condition in their daily life is going on and indicates if there are any difficulties in this.		Guided learning	Attention from healthcare providers from adult care for combining chronic condition in daily life
Independently performs (medical) activities that are necessary regarding their chronic condition and health		Goal setting	Strengthen self-management by goalsetting in ITP
Shows that they can ask for help from friends, family, and healthcare providers when they have questions, concerns, or uncertainties		Guided learning Demonstration	Strengthen self-management and communication skills by goalsetting in ITP
Makes their own appointments with the healthcare providers and attends these appointments		Goal setting	Setting first appointment in adult care
			Send a reminder some days before appointment
Establishes that during the initial appointment, there is time and opportunity to talk about their disease and about combining their chronic condition in their daily life and what matters to them		Guided practice Active learning	Double time consult first appointment in adult care
Establishes if there are difficulties regarding differences between pediatric and adult are and talks about these difficulties with their healthcare provider		Guided practice Active learning	Education about differences pediatric and adult care
			Strengthen self-management and communication skills
Determinant Change goals	Change method			Practical application
Healthcare providers
Knowledge
Mention the importance of personalizing transitional care and what this can contribute to transition success	Information			Share personal stories of AYAs and colleagues with experience of personalizing transitional care
Describe how to actively and routinely tailor transitional care to AYAs’ personal needs, preferences, and values	Active learning			Develop standard formats for the various transitional care interventions to note the personal needs, preferences, and values
				Storytelling of colleagues and AYAs
Attitude
Are willing to personalize transitional care so it is appropriate to each AYA’s needs, preferences and values	Active learning			Applying interventions of transitional care in a personalized way
				Ensure continuity through integration in information management systems
				Align with value-based healthcare to personalize transitional care
Self-efficacy
Actively and routinely tailor transitional care to AYAs’ personal needs, preferences, and values	Modeling Goal setting			Standard formats to personalize transitional care
				Align with value-based healthcare
Identify that information management systems help to align transitional care with the AYAs’ personal needs, preferences, and values	Implementation Demonstration			Integration in information management systems
				Evaluation instruments with focus on transition and personalized care
Parents of AYA with a chronic condition
Knowledge
Explain why it is important to stimulate their child to independently manage their own health and care	Information			Education of parent about their changing role
				Organize meeting with peers and parents: lecture on parenting
Recognize which self-management skills are important for their child	Active learning			Discuss goals to improve AYAs’ self-management with the parents
Attitude
Express confidence to step back from taking responsibility for their child’s health and care	Guided learning			Parents join last part of consultation and let their child tell what was discussed during consultation without parents in the room (split consultation)
Self-efficacy
Show that they can be involved in the background in their child’s appointment with healthcare providers	Guided practice			Transition coordinator stimulates parents to share medical history with their child
				Parents are involved in ITP and development towards self-efficacy of their child
Show they support their child in developing their self-management skills	Guided practice			Contact with peers and parents
				Parents join last part of consultation and let their child tell what was discussed during consultation without parents in the room (split consultation)

ITP = Individual Transition Plan.

3.4. Step 4: program production

Finally, based on the selected change methods and practical applications, a Blueprint for structured transitional care for all AYAs with a chronic condition in the academic hospital setting was designed. To identify the key interventions, we created an overview of the practical applications as listed in Table 6. In this overview, presented in Table 7, applications are subdivided into the behavioral objectives as defined before.

Table 7.

Practical application per behavioral objective.

Behavioral Objectives	Practical applications
AYAs are involved in their transitional care	Develop a transition program Information about transition and transition program Information about the transition coordinator
AYAs develop the responsibility to manage their health and care	Individual transition plan focusing on disease knowledge and history, developing self-management skills to manage the chronic condition and combine it with daily life, developing communication skills Transition Coordinator guides the AYA and parents during the transition period
AYAs build trust to stay in follow-up after transfer to adult healthcare	Joint consultation (get to know the healthcare provider from adult care when still in pediatric Warm Handover with healthcare providers from both pediatric and adult care Double time consultation first time in adult care Inform and prepare in differences in pediatric and adult healthcare system Support and guide AYAs after arrival in adult care with the differences in healthcare system
Healthcare providers support AYAs in tailoring transitional care to personal needs, preferences, and values	Double time consultation first time in adult care to get to know the AYA not only the chronic conditions but also the personal needs and preferences Questionnaires (value based healthcare) that help tailor care to personal needs and preferences
Parents support AYAs in developing their self-management skills	Support parents in their changing role as part of the individual transition plan Stimulate parents to share the medical history with their AYA as part of the individual transition plan Transition coordinator

Key interventions selected into the Blueprint are in bold.

From the overview, eight key interventions were identified that formed the backbone of the Blueprint (Fig. 4). Informational and educational materials, designed to reinforce the impact of the interventions will help achieve the behavioral objectives and change goals.

Fig. 4.

Eight key interventions of the Blueprint for structured transitional care.

The Blueprint for structured transitional care begins in the pediatric healthcare setting and continues until at least one year after transfer to adult healthcare. The eight key interventions are organized into three phases (Fig. 5). Phase 1 prepares the AYA for the transfer to adult healthcare; phase 2 covers the actual transfer, and phase 3 addresses the reception and aftercare within adult healthcare.

Fig. 5.

Blueprint for structured transitional care. PROM = patient reported outcome measure; PREM = patient reported experience measure.

The transition coordinator – a nurse (specialist), medical student, or healthcare management student – guides the AYA and parents during all phases. Involving students in this role of transition coordinator was recommended by the Transition Patient Council to provide age-appropriate coaching through trained peers. The transition coordinator collaborates with AYAs in developing individual transition plans (ITPs) based on questionnaires from the structured, yet adaptable Ready-Steady-Go (RSG) method.⁵¹ A key principle of this method is empowering AYAs to take control of their lives and develop the skills and knowledge needed to manage their healthcare confidently in both pediatric and adult settings. The RSG method can be applied across all subspecialties.

The Blueprint provides for three transitional care consultations aimed to build trust with the adult healthcare providers. The first is a joint consultation (pediatric and adult HCP) around the age of 17 to introduce the AYA to the adult HCP and the adult healthcare system.

The second is the “warm hand-over of care”, which is the actual moment of transfer involving a joint consultation with the pediatric and adult HCP, together with the AYA and caregivers. The third is a double-time consultation with the adult HCP to discuss the AYA’s personal needs, preferences, and values. The addition of the blue circle line in Fig. 5 was suggested by the Working Group as representing the essential collaboration between the pediatric and adult multidisciplinary teams, the AYAs and their parents. Finally, at request of the Transition Patient Council, the Blueprint for structured transitional care will be implemented under the name “Young Adult Program”, because they found the term transition a confusing concept with multiple meanings and definitions. Information of the AYA about the transition process was found to be one of the determining factors for a successful transition.34, 35, 37, 38, 39 To ensure that AYAs and their parents know what to expect during their transition, a whiteboard animation video was developed that summarizes all steps of the Blueprint (https://youtu.be/figTPVoqhDY).

4. Discussion

This paper describes the development of a Blueprint that sets the evidence based example for structured transitional care for all AYAs with a chronic condition in an academic hospital setting. As AYAs treated in academic hospitals often have complex and/or rare diseases,9, 10 transition in this setting requires a more intensive approach when compared to secondary or primary care settings. These AYAs and their healthcare providers encounter various challenges during the transition from pediatric to adult healthcare, including knowledge and skill gaps, distrust, low expectations, loss of access and financial barriers.¹¹ Additionally, adult healthcare teams often face difficulties treating young adult patients with conditions unfamiliar to them.⁵² The Blueprint addresses these issues by involving adult healthcare teams before the actual transfer of care, facilitating collaboration with pediatric teams to exchange knowledge and experience. Structured, multidisciplinary meetings to discuss the AYAs’ health and mental status both before and after the transfer ensure that adult teams are well-informed about the AYAs’ medical history and that pediatric teams remain updated on post-transfer developments and long-term health outcomes. While the Blueprint was developed for all AYAs with a rare or chronic condition it is not suitable for AYAs with intellectual disabilities due to the increased complexity of their needs.⁵³ Additional interventions may be necessary for these AYAs, further research is needed to develop such tailored interventions.

In 2022, shortly after the development of the Blueprint, the Dutch quality standard for the transition from pediatric to adult healthcare was released.⁵⁴ Based on the NICE guidelines, this standard includes widely-used, evidence-based interventions.⁵ The Blueprint incorporates many core interventions of the Dutch quality standard but differs in one key aspect: it requires that AYAs meet their adult healthcare provider twice before transfer. The first meeting occurs around age 17, and the second takes place as a ‘warm hand-over’, when care is officially transferred. This approach is particularly beneficial for AYAs with a rare disease, given their increased vulnerability regards to both current and long-term health challenges. This intervention further helps lift the barriers both AYAs and their providers face, promoting a successful transition.¹¹

To our knowledge, this is the second paper that describes the development of a transition program using the IM method. Acuña and colleagues previously used this method to develop a transition program for AYAs with congenital heart disease, known as the STEPSTONES project.⁵⁵ In contrast, the Blueprint for structured transitional care is designed for AYAs with a rare or chronic condition being treated in an academic hospital and suitable for implementation across all (sub)specialties. The eight components of the STEPTONES project were compared to the eight interventions of the Blueprint. Four of the components and interventions are equal: transition coordinator, transition plan, guidance of the parents and the actual transfer. The other four components from the STEPSTONES project: a) information and education about condition treatment and health behavior; b) availability of email or telephone; c) information about contact with adult care, and d) meeting with peers are not listed as specific or separate interventions in the Blueprint. However, information and education about condition treatment and health behavior is an integral part of the Blueprint’s individual transition plan, that is based on the questionnaires from the structured RSG method.⁵¹ Availability of the team by email, smartphone application and mobile telephone is already part of standard care in the academic hospital. Lastly, information about how to contact the adult team is routinely provided during the warm hand-over. The only component less structurally included in the Blueprint is contact with peers. In the Blueprint, some kind of peer contact is provided by employing students in the role of transition coordinators. Blueprint interventions that are not included in the STEPSTONES project are: a) pre-transfer introduction of the adult specialist during a joint consultation, b) information and preparation about differences in healthcare systems, c) double-time consultation in adult care and d) support and guidance, once arrived in adult care. These interventions are specifically valuable for AYAs with rare diseases.

Got Transition's Six Core Elements of Health Care Transition™ 3.0 is the widely adopted approach called for in the 2018 Clinical Report on Health Care Transition from the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians. The Six Core Elements define the basic components of a structured transition process and include customizable sample tools for each core element.⁵⁶ When compared, the Blueprint includes one or more of the listed sample tools for each core element. Possible advantages of the Blueprint over the Six Core elements are the joint consultations and warm hand-over of care. Another strength is the transition coordinator who continues to guide the patients from pediatric through the first year in adult care.

Appointing students as transition coordinators is a novel concept, driven by the future challenges of keeping healthcare sustainable and considering the scarcity of nursing staff.⁵⁷ Most literature identifies transition coordinators as educators, nurses and nurse specialists, or social workers.19, 43, 47, 49, 58, 59 The student transition coordinators coordinate consultations, discuss the Ready Steady Go questionnaires with the AYAs, make individual transition plans, and guide the AYAs in becoming more independent and empowered to find their way into adult healthcare.

4.1. Strength and limitations

A clear strength of this study is the collaboration with the multidisciplinary Transition Program Development Working Group and the Transition Patient Council throughout all four steps of the IM process. The AYAs in the Council may have focused primarily on their own care experiences. However, they also expressed a strong sense of responsibility for other patients. Also, several limitations of this study need to be addressed. First, the patients and healthcare providers involved in the field research were selected based on their experience with transitional care rather than randomly. This may have introduced selection bias, as both groups were likely more interested in the subject, potentially overlooking critical considerations. Second, most AYAs in the Transition Patient Council were university-educated, which is not representative of the broader population of young people in the hospital. Third, an evaluation and assessment of implementation of the Blueprint was not included in the study. Future studies will assess its executability and effectiveness.

5. Conclusions

This study aimed to develop a generic, hospital-wide Blueprint as an evidence-based example for structured transition from pediatric to adult tertiary healthcare. With the development of the Blueprint for structured transitional care, a transition pathway has been developed for all AYAs with rare and chronic conditions treated in tertiary care, while additional interventions may be necessary for AYAs with intellectual disabilities. The Blueprint corresponds to the Six Core Elements of healthcare transitions and contains the key interventions described in the Dutch quality standard and the NICE-guideline. The Blueprint contains an extra key intervention, namely the joint consultation and therefore suits the needs of AYAs with rare and chronic conditions treated in tertiary care.

CRediT authorship contribution statement

Escher Johanna C: Writing – review & editing, Supervision, Methodology, Conceptualization. AnneLoes van Staa: Writing – review & editing, Methodology, Conceptualization. Schokker-van Linschoten Irene K: Writing – review & editing, Methodology, Conceptualization. Martha A.C. van Gaalen: Writing – review & editing, Methodology, Conceptualization. Vivi Buijs: Writing – review & editing, Writing – original draft, Methodology, Investigation, Formal analysis, Conceptualization.

Ethical statement

Approval to carry out this study was granted by the Research Ethics Review Board of Erasmus University Medical Centre (MEC-2021-0834).

Funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Appendix A

Fig. A1.

Process of literature selection.

A Topic list for the focus group meeting, semi-structured interviews with AYA and semi-structured interviews with healthcare professional

Topic list for focus group meeting

Topic	Sample questions	In-depth questions
Introduction	Getting to know
	Goal of the focus group meeting
	Explain the process
Personal experiences of transition	What did your transition period look like?	Individual transition plan Multidisciplinary Collaboration with adult care Age at start and finish Transition coordinator Personalized Developmental Collaboration with AYA and parent What was it like for others
	What helped the most during transition	What did that look like Why was it helping What was it like for the others? Does this look familiar?
	What was disappointing during transition; What did you miss during transition	What did that look like What do you think is the cause of that? What would have helped What is the consequence What was it like for the others? Does this look familiar?
	What have you experienced as the biggest problem regarding your transition	What was it like for others
	Would you describe your transition as successful and what rating would you give to it	What was it like for others
Causes	When is transition successful	According to you
	What do you think important regarding your transition	Expectations
	What do you think can contribute to a successful transition	What was it like for others
	What do you think could hinder the transition	What was it like for others
Behavior and environment	What have been important people for you during this process	Hospital Social network Peers
	What other factors are important	Besides healthcare professionals and why
Closure	Summary
	Topics not yet discussed
	Follow up
	Thank you

Topic list for semi-structured interview AYA

Topic	Sample questions	In-depth questions
Introduction	Getting to know
	Goal of the semi-structured interview
	Explain the process
Personal experiences of transition	What did your transition period look like?	Individual transition plan Multidisciplinary Collaboration with adult care Age at start and finish Transition coordinator Personalized Developmental Collaboration with AYA and parent
	What helped the most during transition	What did that look like Why was it helping
	What was disappointing during transition; What did you miss during transition	What did that look like What do you think is the cause of that? What would have helped What is the consequence
	What have you experienced as the biggest problem regarding your transition
	Would you describe your transition as successful and what rating would you give to it
Causes	When is transition successful	According to you
	What do you think important regarding your transition	Expectations
	What do you think can contribute to a successful transition
	What do you think could hinder the transition
Behavior and environment	What have been important people for you during this process	Hospital Social network Peers
	What other factors are important	Besides healthcare professionals and why
Closure	Summary
	Topics not yet discussed
	Follow up
	Thank you

Topic list for semi-structured interview healthcare professional

Topic	Sample questions	In-depth questions
Introduction	Getting to know
	Goal of the semi-structured interview
	Explain the process
Personal experiences of transition	What are you already doing on transition and what does transition look like for your patients?	Individual transition plan Multidisciplinary Collaboration with pediatric and adult care Age at start and finish Transition coordinator Personalized Developmental Collaboration with AYA and parent
	What helps you most in guiding young people well during their transition	What did that look like Why was it helping What does that achieve
	What do you struggle with most guiding young people through their transition	What did that look like Do you have a example of it What do you think is the cause of that? What would have helped What is the consequence
	Would you describe your transition for AYAs successful
Causes	When is transition successful for your patients	According to you
	What do you think important regarding your transition	Expectations
	What do you think can contribute most to a successful transition
	What do you think could hinder the transition most
Behavior and environment	What do you think are the most important stakeholders during transition? For you as professional. And for your patients	Hospital Social network Peers
	What other factors are important	Organization Environment Financial
Closure	Summary
	Topics not yet discussed
	Follow up
	Thank you

Table A1.

Overview of included articles.

1st author (year)	Country	Study design	Population and sample size
Atkins et al. (2014)	USA	retrospective review and interviews	109 AYAs with disorders of gut-brain interaction
Bohun et al. (2016)	USA	patient record review	229 AYAs with CHD
Bredy et al. (2024)	France	prospective, controlled, multicenter study	189 AYAs with CHD
Calhoun et al. (2022)	USA	qualitative study with interviews	21 AYAs with sickle cell disease, 17 parents and 21 HCP
Colliander et al. (2024)	USA	systematic review	20 articles Spina Bifida
Culnane et al. (2021)	Australia	before and after study design	28 AYAs with liver transplant
Darbari et al. (2019)	USA	retrospective chart review	117 AYAs with sickle cell disease
Eros et al. (2020)	Hungary	Systematic Review	23 articles IBD
Garcia Rodrigues et al. (2022)	Mexico	Systematic Review	15 articles juvenile chronic inflammatory systemic diseases
Gray et al. (2015)	USA	qualitative focus group interviews	15 AYAs with IBD, 16 parents and 13 HCP
Gray et al. (2017)	USA	Systematic Review	75 articles with various chronic conditions
Hilderson et al. (2015)	Belgium	mixed method study	27 AYAs with juvenile idiopathic arthritis
Kritikos et al. (2024)	USA	national survey	326 AYAs with Spina Bifida
Lindsay et al. (2017)	Canada	qualitative study with semi-structured interviews	4 AYAs with Duchenne muscular dystrophy, 5 parents and 7 HCP
Melton et al. (2024)	USA	retrospective cohort study	3876 AYAs with CF
Philbin et al. (2017)	USA	qualitative study with interviews	58 HCP of AYAs with HIV
Plascevic et al. (2024)	Malaysia	Systematic Review	16 articles Anorectal Malformation and Hirschprung’s disease
Schmidt et al. (2016)	Germany	multicenter prospective quasi-experimental study	325 AYAs with T1D, CF or IBD
Schutz et al. (2019)	Germany	retrospective study	35 AYAs with IBD
Sia et al. (2025)	Malaysia	cross-sectional study	60 HCP (adult surgeons) of AYAs with congenital abnormalities
Sobota et al. (2016)	USA	qualitative focus group interviews	15 AYAs with sickle cell disease
Szymanski et al. (2017)	USA	single center 7 years experience review	77 AYAs with Spina Bifida
Thompson et al. (2019)	UK	review	34 articles liver disease
Toft et al. (2018)	UK	qualitative study with one-to-one and focus group interviews	21 AYAs with liver disease

AYA = Adolescent and Young Adult; CHD = Congenital Heart Disease; T1D = Type 1 Diabetes; IBD = Inflammatory Bowel Disease; HIV = Human Immunodeficiency Virus; CF = Cystic Fibrosis; HCP = Health Care Professionals.

Appendix B

Fig. B1.

Strategy literature selection step 3 intervention mapping.

Table B1.

Included articles with transitional care interventions and outcomes

CF = Cystic Fibrosis; CHD = Congenital Heart Disease; IBD = Inflammatory Bowel Disease; jMRD = juvenile-onset rheumatic and musculoskeletal diseases; SCD = Sickle cell disease; T1D – Type 1 diabetes.

31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42

Appendix C. Supplementary material

Supplementary material

Supplementary material

Data availability

Data will be made available on request.