Interventions to support adolescents and young adults with the healthcare transition from paediatric to adult nephrology health services: A scoping review protocol

Version Changes

Revised. Amendments from Version 2

This scoping review protocol has been revised to ensure grammatical accuracy and methodological clarity throughout. Grammatical clarity has been made in the background section as recommended following the peer review process. All other sections of the scoping review have been reviewed and revised by the primary author (MK) grammatically, where relevant. Web links have been provided for the databases and software used throughout the scoping review, for ease of access.

Abstract

Background

Due to technological advancements and improved medical management of adolescents and young adults (AYAs) living with renal disease, there has been an exponential increase noted in the number of patients advancing from the paediatric to the adult nephrology healthcare setting. Subsequently, more AYAs are required to undergo the process of healthcare transition from paediatric to adult healthcare services. This process can be a challenging period for young people and families and is often associated with a decline in physical and psychosocial health outcomes of AYAs with renal disorders. To ensure a successful transition, AYAs must develop the ability to manage their renal condition, including the medical and psychosocial aspects of their condition, independently. Despite significant research into the transition from paediatric to adult healthcare for this unique patient cohort, the transition period remains a challenge at times. This scoping review aims to map, explore, and understand the interventions that are currently available to offer positive perceptions and experiences of transition for both AYAs living with renal disorders and their families.

Methods

A systematic literature search will be conducted of PubMed, PsycInfo, CINAHL, ASSIA, EMBASE and Web of Science databases from the year 2000 to present. Two independent reviewers will screen the peer-reviewed literature obtained and assess them against the inclusion criteria to determine their inclusion eligibility. Data will be extracted and synthesised using a template refined by the authors. The scoping review will be undertaken in accordance with PRISMA-ScR guidelines. Data will undergo a formal critical appraisal using recognised appraisal tools.

Conclusions

Through mapping this knowledge, the scoping review will aim to identify interventions that are currently available and identify gaps within the literature. This evidence may support the development of transitional care interventions in the future, promote patient satisfaction, and improve patient outcome measures and experiences.

Introduction

The number of young people advancing from paediatric to adult nephrology care has increased dramatically in recent years, and patient survival rates have increased by 85–90% ( Ferris et al., 2006; Lewis et al., 2009; Watson et al., 2011). This may be attributed to the earlier diagnosis, and significant medical and technological advancements over the past few decades, which have accelerated patient survival rates and improved life expectancy ( Joly et al., 2015; Stepien et al., 2021). As a result of such significant progress, more patients are required to undergo healthcare transition, generating an increased need for a structured, well-planned transition from the paediatric to adult healthcare setting ( Joly et al., 2015).

Transitional care was first described in the literature approximately 40 years ago and is now considered to be crucial in the context of adolescent health care ( Barbero, 1982; Wildes et al., 2023). Transition is defined as ‘the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems’. ( Blum et al., 1993, p. 570). Blum et al. (1993), p. 573, further defines how transition ‘attends to the medical, psychosocial, and educational/vocational needs of adolescents’. Transitional care aims to maximise lifelong functioning and patient potential by providing high-quality, continuous and developmentally appropriate healthcare to adolescents and young adults (AYAs) and families when moving between paediatric and adult health services ( American Academy of Pediatrics et al., 2002). Transitional care must be carefully differentiated from the “transfer” of care; “Transition” to adult healthcare refers to the process that commences during childhood and ends once the patient is fully integrated, independent, and comfortable in the adult healthcare system, whereas the “transfer” of care is the distinct point where the patient moves to the new healthcare setting and is just one aspect of the multi-faceted transition process ( Marks, 2022).

There are various interventions available to support the transition process for AYAs and families living with chronic conditions. These interventions include summer camps, clinics, guidelines, transition readiness scales, online educational and interpersonal communication programmes, e-health i.e., the use of mobile apps, the use of digital monitoring devices, problem solving challenges, role-play, arts-based interventions etc. ( Callinan & Coyne, 2020; Catarino et al., 2021; Miller, 2022). The purpose of this scoping review is to map out the interventions that are available to support transition for AYAs living with renal disorders, specifically. Transition is particularly challenging for AYAs living with renal disorders due to the complexity of their conditions. For example, patients with renal disorders may receive renal transplantation or other specialist treatments, such as enzyme replacement therapy for Fabry’s disease ( Quaglia et al., 2014; Riccio et al., 2020).

Furthermore, moving from paediatric to adult care occurs during a turbulent, precarious period of the young person’s life ( Bell, 2022). The transition process occurs in tandem with the necessary life transition from adolescence to adulthood, which is well-recognised as a period of rebellion, engagement in risk-taking and impulsive behaviour, and non-adherence attributed to ongoing and incomplete development and maturation; a period where adolescents often experiment and feel unconquerable ( Foster, 2015; Kreuzer et al., 2019; Tareen & Tareen, 2017; Watson, 2005). This adolescence/young adulthood period occurs between the ages of 14–24 years, in the context of brain development and maturation ( Watson et al., 2011). Hence, young people in this age bracket must be carefully considered when planning transition ( Bell, 2007; Watson et al., 2011).

The role of the family in the transition process must also be recognised and considered. As Betz et al. (2015) discussed, the healthcare transition process instigates a realignment of the relationship between AYAs and their parents or caregivers. AYAs must learn how to self-manage their condition, a role which may have previously been managed by their parents or caregivers. Simultaneously, parents or caregivers themselves must be prepared for the transition process. A study undertaken by Shaw et al. (2021) identified that parents/caregivers struggle to let go of their current role in their young person’s healthcare due to feelings of fear or uncertainty regarding their AYAs future once they reach adulthood. Families must receive adequate support and guidance during the transition process, and their role must not be forgotten. Though this scoping review will specifically search for interventions to support a positive transition process for AYAs with renal disorders, interventions that also refer to the role of the family in the process will be included, as the role of the family is integral to a successful transition of care.

Despite the complexity of the transition process, evidence suggests that most AYAs and families receive inadequate or a total absence of transition preparation ( Gabriel et al., 2017). If AYAs transition to adult healthcare in a scenario whereby they are not able to manage their disease independently or self-advocate, undesirable health outcomes may arise ( Ma et al., 2021; Young et al., 2010). This is problematic and adds to the already challenging period that AYAs face at this time; AYAs are navigating adolescent development and the transition to adulthood, whilst also learning to manage the various aspects of their healthcare and attend to the practicalities of various treatments, interventions, and appointments that they undergo ( Kralik & Van Loon, 2010). In addition to this challenging developmental period, young people with kidney disease have more specific medical needs that they must manage, such as steroids, which may alter their appearance, their growth may be stunted, they may be faced with intensive lifestyle changes, inclusive of fluid and diet restrictions, medication regimens with side effects, and AYA’s may have to undergo dialysis, which comes with side-effects such as fatigue ( Dallimore et al., 2018).

A failure to transfer AYAs using carefully planned, well-designed, feasible transition programmes and interventions with the required competencies to manage their condition, may lead to poor attendance at adult nephrology units ( Çiçek & Alpay, 2022). In turn, AYAs are placed at high risk of clinical deterioration, resulting in a cascade of negative health outcomes ( Foster & Bell, 2015; Kreuzer et al., 2019; Prüfe et al., 2022; Watson et al., 2011). This may be attributed to multiple factors and not exclusively poor attendance to adult clinics, such as non-adherence to medications or medical treatment and regimens, including non-adherence to life-long immunosuppressive regimens, leading to an increased risk of rejection and allograft loss and oftentimes a return to dialysis ( Akchurin et al., 2014; Campbell et al., 2016; Crawford et al., 2020; Dobbels et al., 2010; Dobbels et al., 2009; Foster, 2015; Foster & Bell, 2015; Kreuzer et al., 2019; Mazzucato et al., 2018; Prüfe et al., 2022; Quaglia et al., 2014; Wildes et al., 2023).

Moreover, the transition process must be considered for AYAs living with rare renal disorders. Transition is often challenging for AYAs and families living with rare renal disorders. Over 300 inherited, congenital, and acquired renal disorders may be defined as rare renal disorders ( Bassanese et al., 2021; Devuyst et al., 2014). The list of rare renal disorders is constantly growing ( Joly et al., 2015). In Europe, renal disorders have an estimated prevalence of approximately 60–80 cases per 100,000, with nearly all children who progress to renal-replacement therapy living with an inherited kidney disease ( Devuyst et al., 2014). Children born with rare renal disorders, particularly severe congenital nephropathies, and their families often live with impaired physical, cognitive, and psychosocial development ( Aymé et al., 2017; Devuyst et al., 2014). Many young people living with such conditions are now surviving into adulthood with conditions that were previously unknown to or not frequently seen by adult nephrologists ( Marks, 2022).

As a result, adult nephrology services are receiving a growing number of AYAs with rare renal disorders who have transitioned from paediatric services ( Watson et al., 2011). The transition from the paediatric to the adult healthcare setting for these patients has been reported to be a challenge to transfer at times, due to lack of training and knowledge of adult nephrologists of these rare conditions, amongst several other reasons ( Prüfe et al., 2017; Watson et al., 2011). However, this cohort of patients must be carefully considered, as congenital anomalies of the kidney and urinary tract have been cited as the most common causes of end-stage and chronic kidney disease in childhood ( Marks, 2022). These patients and their families must be carefully transitioned from paediatric to adult health care, with emphasis placed on the need for these patients and families to have adequate knowledge surrounding how to manage their health and transfer to adult-centred care with the required medical knowledge ( Gabriel et al., 2017).

Transition aims to gradually prepare AYAs and families for a successful integration into the adult healthcare system in a stepped, co-ordinated and uninterrupted manner ( Matsuda-Abedini et al., 2023). A positive transition begins in the paediatric health setting and prepares the adolescent to become a self-responsible adult patient who manages their condition appropriately and ends with the patient finding their place in the adult healthcare system in a safe and secure manner ( Kreuzer et al., 2019; Paone et al., 2006). Transition is considered successful if the patients’ health competence, psychosocial needs, and self-determination are promoted, and when the patient has improved decision-making abilities and the ability to communicate their care effectively ( Kreuzer et al., 2019; Prüfe et al., 2022; Watson et al., 2011).

The importance of an effective transition programme, incorporating well-planned interventions and strategies for young people living with renal disorders is apparent. Studies have demonstrated that the highest rate of kidney transplant loss occurs during the transition years and immediately following transfer of care ( Foster, 2015; Foster & Bell, 2015; Kreuzer et al., 2019; Prüfe et al., 2022; Watson et al., 2011). Therefore, this age group must be carefully managed, as graft failure often requires a return to dialysis, reducing the patient’s quality of life, increasing morbidity and mortality rates, shortening AYAs life expectancy, and heightening health care expenses ( Prüfe et al., 2022). Transition programmes and effective transition interventions may reduce the risk of declining renal function and acute kidney rejection episodes and may improve long-term graft outcomes ( Raina et al., 2018). Providing increased knowledge, awareness, and education to AYAs surrounding their condition and the transition process, and providing appropriate, relevant, easily accessible self-management strategies may better support AYAs with the transition process. Psychosocial support, the management of potential extrarenal complications, and the provision of genetic and reproductive counselling are other integral components that must be integrated within the transition programme ( Aymé et al., 2017). Due to the complexity of renal diseases, transition support and services must be carefully planned and timed and focus on empowering a safe transfer of care from the child to the adult healthcare setting for AYAs and families living with renal diseases, to ensure the risk of negative health outcomes is mitigated.

A preliminary search of databases including Medline, PROSPERO, the Cochrane Database of Systematic Reviews, and Google Scholar was conducted on the 1 ^st of October 2022. An ongoing systematic narrative review protocol was located on PROSPERO by Piccoli et al. (2020), which will explore the best approach for the clinical management of young people with chronic kidney disease undergoing healthcare transition. However, this scoping review differs in that it aims to scope the literature and map any intervention to support transitional care for AYAs with renal disorders within healthcare settings, inclusive of rare renal disorders, chronic kidney disease, patients undergoing dialysis, and transplant recipients. For this review, an intervention may be defined as any programme, service, intervention, clinic, scale, model, tool, or activity to support AYAs with renal disorders as they transition from paediatric to adult healthcare services.

Methods

This scoping review employs the five-stage framework, as outlined by Arksey and O’Malley (2005), incorporating recent methodological refinements proposed by Levac et al. (2010) and the Joanna Briggs Institute (JBI) ( Peters et al., 2015; Peters et al., 2020A; Peters et al., 2020B). Arksey and O’Malley (2005) also identified an optional ‘consultation exercise’ to inform and validate findings, as a sixth stage at the end of the review ( Arksey & O’Malley, 2005).

This step has been identified as a stage that will improve the review remarkably ( Arksey & O’Malley, 2005). Researchers from various academic and health disciplines who have conducted research or cared for patients and families undergoing healthcare transition, and established patient and public involvement (PPI) groups, inclusive of AYAs with experience of healthcare transition and their families, will be invited to be a part of the scoping review and appraise and validate the review findings. The Preferred Reporting Items for Systematic reviews and Meta Analyses Scoping Review extension (PRISMA-ScR) checklist will be utilised to increase methodological transparency and ensure consistency when publishing findings ( Tricco et al., 2018). The six-stage scoping review framework developed by Arksey and O’Malley (2005), incorporating guidance from the JBI ( Peters et al., 2020A; Peters et al., 2020B), will be employed to guide the scoping review.

Aims/objectives

This scoping review aims to map the various interventions available within the literature to support AYAs living with renal disorders as they transition from the paediatric to the adult healthcare system. The following research questions will be addressed:

• 1. Identify, appraise, and synthesise knowledge surrounding the interventions available to support a successful healthcare transition for young people living with renal disorders.
• 2. Ascertain whether the AYAs were involved in the intervention’s development.
• 3. Determine the study settings and geographical contexts, and the study types conducted (i.e. qualitative, quantitative or mixed-methods).
• 4. Understand the experiences, barriers and facilitators recognised by young people living with renal disorders, of current transition interventions.
• 5. Identify research and knowledge gaps in the literature.

Stage one: Identification of the scoping review research question

The scoping review question guides and directs the review stages. In this review, the population, concept, and context (PCC) framework will be utilised, which has been recognised as an effective framework for a scoping review by the JBI ( Peters et al., 2020A). The preliminary question is:

What interventions are available to support the transition of care (Concept) from the paediatric to adult healthcare setting (Context) for adolescents and young adults living with renal disorders (Population)?

Stage two: Identifying relevant studies

A systematic literature review aims to obtain as many relevant studies as possible on a particular topic, using a thorough, objective, and reproducible search ( Levay & Craven, 2019). Being systematic minimises bias ( Levay & Craven, 2019). The review question has been formulated using the PCC framework. This ensures that appropriate, relevant search terms can be included in the search strategy, ensuring the retrieval of pertinent results on the interventions available to support the transitional care of AYAs living with renal conditions, and will ensure that the retrieval of irrelevant results is minimised.

Eligibility criteria

The inclusion and exclusion criteria is developed through the generation of a PCC table ( Table 1), as recognised by Boland et al. (2017) as an effective means of defining criteria. This process remains iterative, and any changes made throughout the review will be recorded and documented to maintain transparency when reporting the scoping review.

Table 1. Inclusion and exclusion criteria.

Review question	What interventions are available to support the transition of care from the paediatric to adult healthcare setting for adolescents and young adults (AYAs) living with renal disorders?
	Inclusion	Exclusion
Population	Humans. Studies that include AYAs (12–24 years old), who are living with a renal disorder. AYAs must be: (a) preparing for transition; (b) currently undergoing transition; (c) having undergone transition from the paediatric to the adult healthcare setting. Studies that refer to families, caregivers, healthcare providers, transition programme managers and policymakers involved in the transition process alongside the AYAs. Male, female and non-binary individuals.	Any study population other than humans, i.e., animals. Studies that do not include AYAs between 12–24 years old who are living with renal disorders. Studies that do not refer to AYAs undergoing the transition process from the paediatric to the adult healthcare setting.
Concept	The concept of transition from the child family-centred to the adult person-centred healthcare system. Transitional care interventions – any intervention, for example, programme, service, intervention, clinic, or activity that aims to support the movement of AYAs and families from paediatric to adult healthcare services.	Does not refer to transition from a child-centred to adult-centred healthcare system. Any intervention that is not designed to support transition.
Context	AYAs with renal disorders, including chronic renal disorders, rare renal disorders, kidney transplant recipients and AYAs on renal dialysis.	Studies that do not refer to renal disorders, including chronic renal disorders, rare renal disorders, kidney transplant recipients and AYAs on renal dialysis.
Study design and study focus	All primary peer-reviewed studies of any study design.	Studies that are not primary peer-reviewed studies.
Setting/geographical location	Health services, including hospitals (various areas within the hospital such as wards, outpatient departments etc.). Interventions provided in the community by healthcare professionals from secondary or tertiary health services will also be included. No limits will be placed on geographical location, both national and international literature. No limits will be placed on language.	Studies that refer to any other transition process, other than the transition process from the paediatric to adult healthcare services. Studies that do not refer to secondary or tertiary healthcare services. Other health service areas such as respite or residential centres, or special care.
Time period	Studies on or after the year 2000 to current.	Any study prior to the year 2000.

Population

This scoping review will include AYAs living with any renal condition, encompassing any chronic or rare renal condition, patients who are currently on renal dialysis, and renal transplant recipients. Though this scoping review will specifically search for interventions to support AYAs with the healthcare transition, studies that refer to families, caregivers, healthcare providers, healthcare transition programme managers in the clinical setting and policymakers involved in the transition process alongside the AYAs will also be included, given the critical and invaluable role that they play in the transition process.

Age

Studies will be included if they refer to AYAs between the ages of 12–24 years old, who are either (a) preparing for the transition process, (b) currently undergoing the transition process, or (c) having undergone transition from the paediatric to the adult healthcare setting. This age range is deemed appropriate, as 13/14 years old is the recommended age to commence the transition process, and through the inclusion of patients up until the age of 24 years, we can retrieve results from patients who may have completed the process ( Willis & McDonagh, 2018). Furthermore, this age group is appropriate, as the International Society of Nephrology and the International Pediatric Nephrology Association have recommended that transition should occur between 14 and 24 years old ( Joly et al., 2015). By including 12- and 13-year-olds, we can capture patients who are about to commence transition.

Gender

Studies that refer to male, female, and non-binary young people with renal disorders will be included in the review. This will avoid gender bias ( Upchurch, 2020). Gender is often characterised as female, male or non-binary. This review will include all genders to promote inclusivity and to widen participation.

Concept

This review will examine the concept of transition, which may be defined as the individualised, well-planned process whereby adolescents move from paediatric, family-centred health services to adult, person-centred health services ( Campbell et al., 2016). This review will examine interventions that support the transition process. For this review, interventions encompass any programme, service, intervention, clinic, or activity that aims to support the movement of AYAs and families from paediatric to adult healthcare services.

Context

Setting

This scoping review will include primary research studies that have been conducted in multiple different settings within secondary and tertiary level health services, including hospitals (including various areas within the hospital such as wards or outpatient departments). Nonetheless, studies that refer to interventions provided in a community setting by healthcare providers from secondary or tertiary healthcare services will be included. This decision has been made, as this scoping review is part of a larger PhD study examining healthcare transition in secondary or tertiary healthcare settings. The results of this review will feed into the primary research study, which focuses on how healthcare professionals from secondary or tertiary health services can support young people and families living with renal disorders with healthcare transition.

Geographical location

No limits will be placed on the geographical locations included within this study. Furthermore, though the literature will be searched in English, there will be no language limits placed on our initial search. This ensures that language and publication bias is avoided. It also ensures maximum retrieval of literature in all potential languages. As discussed by Boland et al. (2017), language bias may arise if only English-speaking countries are included due to English-language journals being more likely to publish positive results. Efforts will be made to translate study abstracts, where possible, using translation tools such as Google translation services. However, literature that is obtained but not in the language of choice (English), and that cannot be readily translated due to resource limitations, will be excluded ( Gough et al., 2017).

Nonetheless, by not setting language limitations when searching, all potential literature can be obtained and made readily available for other researchers who may have the resources to translate the articles that are obtained ( Gough et al., 2017).

Types of sources

This scoping review will include all primary peer-reviewed study designs that explore the interventions to support the process of healthcare transition amongst young people with renal disorders, including any quantitative, qualitative, multi-method or mixed-method study designs or methodologies. This will ensure that the authors can capture studies which refer to interventions and those that refer to AYAs/families/healthcare professionals experiences of those interventions, where relevant. In the initial reviewing process, both studies available in full-text and abstract format will be considered for review. This will ensure that the most up-to-date evidence is not missed ( Boland et al., 2017). Any literature that does not present data meeting the inclusion criteria will be excluded.

Only peer-reviewed papers that have been published within academic journals will be included in this scoping review. Literature reviews, case studies or reports, opinion pieces, commentaries, editorials, and conference abstracts will be excluded from the review, based on resource availability to the primary researcher (MK), including a limited amount of time and funding to undertake the review as part of an academic degree. Furthermore, the inclusion of primary, peer-reviewed studies has been selected, as the authors seek to understand how the interventions identified were developed. Developing this understanding of the theoretical and methodological underpinning of the intervention’s development will support the authors in the next phase of the research study. Nonetheless, the authors recognise the importance of including grey literature in scoping reviews. Given that the authors primary PhD study will be conducted in the context of the Irish healthcare setting, national grey literature will be sourced and included in the discussion of the scoping review, to compare the international interventions sourced with those used within the Irish healthcare setting.

Search strategy

The formulation of a search strategy is invaluable and must be transparent, accountable, and replicable, ensuring a systematic process is followed ( Gough et al., 2017). A comprehensive search strategy was developed by the primary researcher (MK) through a period of consultation with a librarian (DS) experienced in undertaking systematic literature searches ( Table 2). An initial scoping search was conducted in the databases CINAHL Plus with Full Text, PubMed, Applied Social Sciences Index and Abstracts, PsycINFO, Web of Science and Embase on the 2 ^nd March 2023. This identified articles relevant to the topic. Free-text words and subject headings/index terms were located from the titles, abstracts, and the main texts of articles and were used to develop the search strategy ( Boland et al., 2017).

Table 2. Search strategy.

Research question themes	Search terms
Population	“young people” OR youth* OR adolescen* OR teen* OR “young person*” OR juvenile* OR child* OR kid OR kids OR minor* OR pre-adult* OR preadult* OR “pre adult*” OR “young adult*” OR child-hood OR pubescen* OR puberty OR “emerging adult*” OR pediatric* OR paediatric*
Concept	intervention* OR program* OR tool* OR model* OR scale* OR framework* OR clinic* OR e-health* OR mHealth* OR eHealth* OR m-health* OR “mobile health*” OR “electronic health*” OR “digital health*” OR digi* OR digi-health OR procedure* OR protocol* OR pathway* OR manual* OR strateg* OR measure* OR application* OR app OR apps OR “mobile application*” OR “mobile health application*” OR workshop* OR recommendation* OR support* OR instrument* OR website* OR web OR guide* OR guidance OR activit* OR mechanism* OR approach* OR method* OR scheme* OR digital-health* OR software* OR telemedicine OR “tele medicine” OR tele-medicine OR telenursing OR “tele nursing” OR tele-nursing OR telecare OR tele-care OR “tele care” OR telehealth* OR tele-health* OR “tele health*” OR policy OR policies OR resource* OR initiative* OR curriculum* AND transition* OR “transfer to adult care” OR “transfer from pediatric to adult care” OR “transfer from paediatric to adult care” OR “transfer to adult health*” OR “transfer care” OR “care transfer*” OR “healthcare transfer*” OR “health-care transfer*” OR “health transfer*” OR “medical transfer*” OR “patient transfer*” OR “care coordination*” OR “care co- ordination*” OR “co-ordination of care” OR “coordination of care” OR “care continuum*” OR “continuum of care” OR “patient handoff*” OR “clinical handover*” OR “continuity of care” OR “continuity of patient care” OR “care continuity” OR “healthcare continuity” OR “health-care continuity” AND “healthcare setting*” OR “health care setting*” OR “health-care setting*” OR “health care facilit*” OR “health-care facilit*” OR “health care service*” OR “healthcare service*” OR “health service*” OR “health-care service*” OR hospital* OR clinic* OR outpatient* OR “emergency department*” OR “emergency room*” OR “emergency service*” OR “emergency medical service*” OR ward* OR inpatient* OR “tertiary health*” OR “tertiary care” OR “tertiary referral cent*” OR ED OR ER OR “A&E” OR in-patient* OR out-patient* OR “secondary health*” OR “secondary care” OR “secondary referral cent*” OR “ambulatory care” OR “ambulatory health*” OR “acute care” OR “acute service*” OR “acute health*” OR “emergency care” OR “accident and emergency” OR “health facilit*” OR “healthcare facilit*” OR “paediatric unit*” OR “pediatric unit*” OR “care unit*” OR ICU OR PICU
Context	renal OR kidney* OR nephrol* OR dialysis OR haemodialysis OR hemodialysis OR allograft* OR graft* OR transplant* OR “renal replacement therapy” OR “kidney replacement therapy”

Thesaurus tools, database specific subject headings and synonyms were utilised and shared across databases to maximise search results. Furthermore, the use of truncation was utilised ( Gough et al., 2017). The literature search strategy utilised will be reported in the scoping review, within a table in the appendix, to ensure easy replication by others ( Tricco et al., 2018). The search strategy is iterative ( Gough et al., 2017). Therefore, any modifications or adjustments to the search strategy as the review progresses, will be clearly documented to ensure transparency in searching. Database searches will be limited to the year 2000, ensuring that the results portray relevant interventions that consider medical and technological advancements within the realm of healthcare over the past two decades. Only peer-reviewed literature will be included in the scoping review.

To ensure a comprehensive mapping of the literature, a broad range of databases will be searched. The databases that will be searched include: (1) health databases, including PubMed, CINAHL Plus with Full Text and Embase; (2) social sciences databases, including PsycInfo and ASSIA; and (3) the multidisciplinary database, Web of Science.

Searching more than one database will ensure that the results portray the breadth of evidence available. Furthermore, the databases selected encompass health, social sciences, and multidisciplinary databases. These databases have been chosen strategically, as transitional care requires a multi-disciplinary approach, and must include not only physical support, but also psychosocial support ( Aymé et al., 2017). Therefore, it is essential to not only include health databases, but also social sciences and multidisciplinary databases. The author will not undertake complementary search techniques, including bibliographic searching and hand searching, in addition to searching databases due to the time restrictions of the primary author to complete the review in a timely manner as a component of their academic degree.

Stage three: Study selection

Each search will be documented in a systematic manner, and will record the date the search was carried out, the search terms utilised, and the results per search string. This information will be available in the appendix of the scoping review. Following the search, all results obtained will be collated and imported into a bibliographic reference manager EndNote 20 ( Clarivate Analytics, 2023). All imported results will be dated and saved to individual libraries, depending upon which database they were collected from. This enables the authors to keep a record and manage their search results. Following the import of the results to EndNote 20, all duplicates will be removed.

The number of articles retrieved following these steps will be added to the PRISMA-ScR flowchart, as recommended by the JBI ( Peters et al., 2020A) ( Figure 1). A PRISMA-ScR flowchart will be completed following the completion of each search to ensure transparency when mapping the number of records identified and to provide a rationale as to why studies were excluded ( Page et al., 2021).

Figure 1. PRISMA 2020 Flowchart for Scoping Review ( Page et al., 2021).

Search results from ( Clarivate Analytics, 2023) will be imported for further screening and review in Covidence systematic review screening and data extraction software tool ( Covidence, 2022). Once complete, the screening and data extraction process can commence. This process will be undertaken in three steps: (1) title and abstract screening; (2) full-text review; (3) data extraction in Covidence. Following the removal of duplicates, screening will be performed. The titles and abstracts of all studies obtained, will be screened against the inclusion and exclusion criteria. ( Boland et al., 2017). Thereafter, the full texts will be screened against the inclusion and exclusion criteria. Two reviewers will screen all results independently (at both title and abstract and full text stage), before being included or excluded in the review. This reduces bias and makes the review process more robust ( Boland et al., 2017).

A pilot test of the literature obtained (n=100) will be undertaken using Covidence software with the inclusion and exclusion criteria inputted to the software tool at both screening stages to ensure that all reviewers are satisfied with the criteria, and so as relevant amendments can be made if required. Undertaking a pilot test of the screening process is recommended by Peters et al. (2020A). This process will be transparent, and all decisions made surrounding which literature was included or excluded will be documented, with a rationale for inclusion or exclusion provided at the full-text screening stage. Covidence will support this process by recording and tracking all decisions made throughout the review. Any disagreement between authors during the screening process will be overcome through discussion between reviewers, or through the second author (TK) being consulted and adjudicating. Furthermore, if any missing data is noted within papers, the authors will be contacted by the primary author (MK). This will ensure maximum retrieval of full-text papers when the full report of the study is not easily or readily available online or from the library.

Stage four: Data charting

In scoping reviews, data extraction is often referred to as “data charting” ( JBI, 2022). Data charting will be undertaken using a version of the JBI data extraction tool, referred to as a charting table, modified by the authors to fit the objectives of the scoping review ( Table 3) ( Peters et al., 2020A; Peters et al., 2015). An example of the data charting tool will be included in the appendix. This charting form will be piloted on two articles by two independent authors, on articles chosen at random.

Table 3. Sample data charting form.

Data chart heading	Description
Author(s)/Year	Name of author(s)/The year that the article was published
Title of article	Title of the article or study
Origin/Country of Origin	Where the article/study was published/conducted
Study Aims/Purpose	The aims of the study
Population and sample size	Population/sample size within evidence
Research Design/ Methodology	Research methods/design/techniques employed
Quality Appraisal	Critical appraisal through appraisal tools
Data Analysis	Analysis of the data
Study setting	The setting the study was conducted in
Intervention type	Details surrounding the intervention and its duration (if applicable)
Co-Design	Were AYAs/Families involved in the interventions design?
Experiences	What was the experience of the AYAs/families surrounding the named intervention? What were the barriers/enablers of the named intervention?
Findings/Conclusion	Important findings from the research, including strengths and limitations of the study/intervention, areas for future research/ gaps in the knowledge and any important aspects of the conclusion

This tool may be further refined in the subsequent review during the data charting process, as the review progresses. Modifications will be detailed in the scoping review for transparency in reporting. The data that will be charted includes details surrounding the population, concept, context, study methodology, quality appraisal, and findings that are pertinent to the review’s aims and objectives. We will also chart information on the interventions including their use and whether the intervention was co-designed with AYAs and families. The preliminary data charting process will be undertaken by the primary author (MK) and will be audited and reviewed by the fourth author (SS). Once both the first and fourth author reach consensus on the data charting table, it will be made available for all authors involved in the review through the utilisation of a shared Google drive. The table will be discussed with all other reviewers to seek their feedback and make further refinements, as necessary. This will be an iterative process until all authors reach consensus.

Quality appraisal

Though optional, for the scoping review a quality appraisal will be undertaken, using the Mixed Methods Appraisal Tool (MMAT) ( Hong et al., 2018) and the Critical Appraisal Skills Programme (CASP) ( Critical Appraisal Skills Programme, 2022). Quality appraisal or critical appraisal is defined as a process whereby research is evaluated carefully and systematically in terms of the trustworthiness, relevance, and value of the research ( Burls, 2014). This process has been identified as a process that will improve the quality of the study through careful evaluation of the research studies retrieved in terms of their methodological quality.

Stage five: Collating, summarising and reporting results

In line with scoping review guidance, the results of the literature search and screening process will be presented within a PRIMSA-ScR flow diagram ( Peters et al., 2020A). Any key constructs that emerge from the interventions will be summarised through basic descriptive content analysis by the authors, in line with the JBI guidance, which advocates that scoping reviews should only incorporate basic descriptive analysis ( Peters et al., 2020A).

Quantitative studies retrieved will be analysed using basic frequency counts of concepts, populations, and study locations, followed by a narrative summary ( Peters et al., 2020A). The purpose for providing frequency accounts of study locations, concepts and populations is to enable the author to map the geographical areas and populations that are most represented in the current literature. This will further identify gaps in the literature and prioritise areas for future research. Qualitative studies will be summarised through descriptive content analysis by the authors ( Peters et al., 2020A). Basic data coding will be undertaken by the authors to categorise data and enable identification and clarification of concepts or definitions within the field ( Peters et al., 2020A).

The "PAGER" framework will be utilised as a framework to summarise and report the results of the review. This tool provides a standardised approach to analysing, reporting and synthesising scoping review findings, and is based on ‘patterns’, ‘advances’, ‘gaps’, ‘evidence for practice’ and ‘research recommendations’ found within the literature ( Bradbury-Jones et al., 2022). Recommendations for future research will be presented relative to the scoping review findings. The results of the review will be discussed between the authors, and then with an expert advisory panel, to further validate and add meaning to the results obtained. The results of the review will be presented in the form of diagrams, tables, graphs, and a narrative summary of the findings. The authors will be transparent and explicit in their approach to data analysis, summarising and reporting the scoping review results, and will document all decisions made throughout the review, as recommended by Peters et al. (2020A).

Stage six: Consultation

Consultation will occur at the end of the review, through the development of an expert advisory panel that will be invited to discuss the reviews findings and implications for practice. Reviewers will consult with and invite experts from Universities and Healthcare Settings in Northern Ireland and the Republic of Ireland to act as an expert panel for this review. It is anticipated that this panel will include individuals with expertise in transitional care, paediatric nephrology multidisciplinary teams, and staff members from academia. Furthermore, and importantly, the review results will be distributed to established PPI groups, including AYAs with renal disorders and families, who will be invited to provide feedback on the review results.

Dissemination

Various dissemination strategies will be employed following the completion of this scoping review. The results of the scoping review will be shared amongst researchers and academics interested in transitional care from various academic institutions within the Republic of Ireland and Northern Ireland. The results will be shared with multi-disciplinary teams within both adult and paediatric clinical settings on a national level that care for AYAs with renal disorders undergoing transition. The results will also be shared with PPI groups, including young people and families living with renal disorders that have experienced healthcare transition. The primary author (MK) will present the scoping review findings to these teams and population groups and seek their feedback and perspectives on the transitional care interventions located from the literature. The primary author will strive to present the findings of this scoping review, through oral and poster presentations, at local, national, and international conferences, as can be facilitated. Following completion of the scoping review, the author will strive to publish the review in a peer reviewed journal, such as the Journal of Pediatric Nursing. Publication in a peer-reviewed academic journal is an excellent means of reaching and sharing findings with relevant academic, clinical and research audiences ( Boland et al., 2017). The authors will also engage with PPI groups, to ascertain the best means of ensuring the research findings can be disseminated appropriately and reach the end-users, for example, through social media.

Study status

This scoping review is currently at stage four: data charting. Database searches and screening have been completed.

Conclusions

For AYAs and families living with renal disorders, the transition from paediatric to adult healthcare can be challenging. Transition is often associated with risk, health status deterioration and psychosocial stress. There is an urgent need to better understand the interventions that support AYAs living with renal disorders and their families to obtain the required competencies to safely transition in to the adult healthcare setting. This scoping review will explore what is known about such interventions to promote patient satisfaction and improve patient outcome measures and experiences.

The results will synthesise the evidence that is currently available on such interventions. These findings may assist with the future development of transitional care interventions for AYAs with renal disorders. This scoping review is part of a doctoral research study examining the current transition care available for AYAs and families living with renal disorders. The results will be invaluable to feed into the primary research study and better understand the interventions utilised during the transition process for this cohort of patients. Results will be shared with nephrologists, the wider multidisciplinary team, researchers, AYAs and families through rare disease and renal organisations.

Funding Statement

This work is supported by University College Dublin. The review is being undertaken as part of a greater PhD study by the primary reviewer (MK), and is supported by the University College Dublin, School of Nursing, Midwifery and Health Systems PhD Nursing Scholarship 2022 (grant number: COV19-2020-017, assigned to the fourth author Dr. Suja Somanadhan).

The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Data availability

Underlying data

No data are associated with this article.