Transition programmes for children moving from paediatric to adult eye care services: A scoping review

Abstract

Purpose

For young people, transition programmes between paediatric and adult services ensure continuity of care for young people while improving their confidence and autonomy in managing their health. Despite targeted support improving outcomes in other chronic conditions, the development of transition programmes in children's eye care remains limited. This scoping review aims to review published literature about transition programmes supporting young people in ophthalmic services.

Methods

Following guidance from the Joanna Briggs Institute, we carried out a scoping review, searching Ovid MEDLINE, Ovid Embase and Cochrane Library databases to identify articles on transition programmes for young people from paediatric to adult eye care services. Two reviewers independently screened the titles and abstracts before reviewing the full text. We extracted data into a pre-specified extraction tool.

Results

Of 339 identified publications, five met the inclusion criteria. No publications specifically addressed transition programmes in ophthalmology. The included studies reported ophthalmic care within the context of systemic conditions. Two studies reported a transition programme for young people with type 1 diabetes, two rheumatological conditions, and one explored young people's views on the transition process in an eye/vision context.

Conclusion

This review highlights the scarcity of reports about transition programmes relating to ophthalmology. Existing programmes in other specialities can provide a framework which could be adapted to ophthalmology. Further research is required to develop the use and impact of programmes in ophthalmology to ensure better outcomes for patients and healthcare providers.

Keywords

Transition programme adolescents young adults chronic conditions

Introduction

Growing up means gaining independence and autonomy, and also learning how to take responsibility for one's lifestyle and healthcare. For young people with chronic health conditions, learning about their condition and its management, how to interact with healthcare professionals, and how to advocate for themselves, is an essential part of growing up and is needed when moving from paediatric to adult healthcare services. For providers, transition is defined as the intentional and carefully planned process of transferring adolescents and young adults with chronic medical conditions from paediatric healthcare systems/ providers to those focused on adult care.^1,2

Targeted support with the transition during adolescence and ensuring that young people are ready for transition are associated with better clinical and psychosocial outcomes in a range of chronic conditions with onset in childhood,^2,3 such as inflammatory bowel disease,^1,4 type-1 diabetes⁵ and juvenile idiopathic arthritis (JIA),^6–8 but clinical implementation is variable.^8–10Chronic conditions affecting eyes can also present early in childhood and persist into adulthood, but there appears to be a lack of evidence regarding transition programmes in ophthalmology.

This scoping review aims to collate and evaluate existing literature about programmes supporting young people with their transition from paediatric to adult ophthalmic services and identify gaps to guide future programme development and evaluation.

Methods

We developed the protocol following Joanna Briggs Institute guidance¹¹ and published it on Open Science Framework.¹² This review follows the Preferred Reporting Items for Systematic Reviews and Meta-analysis Protocols/ Extension for Scoping reviews (PRISMA-ScR).¹³

Eligibility criteria of reviewed studies

We included publications that included children and young people aged around 13–25 years. As transition programmes should consider the young person's maturity, an exact age limit cannot be set. We included publications that report the development, use and/ or evaluation of programmes to support young people with their transition from children's to adult eye care services. Transition programmes could be described as an intervention, and could include educational programmes including software, joint clinics staffed by paediatric and adult health care professionals, or any other activity that supports the transition from children's to adult eye care.

Outcomes included processes (e.g., developing and implementing a transition programme), patient – / condition – / service-specific outcomes (e.g., transition readiness, adherence, appointment attendance, and visual outcomes), and any unanticipated events.

We did not restrict the review to publications from specific geographic locations. We included studies conducted in all settings where eye/ vision care is provided for this age group, including community and hospital settings, child development centres, low-vision services (qualified teachers for sight-impaired students/ family support services) and local authorities. We included primary research articles with any study design other than single-case reports and secondary data analyses. We included peer-reviewed journal articles published until the last day of the search, written in English. We excluded articles in other languages that did not include an English translation within the publication, animal and cell/ tissue studies. We excluded interventions that are medicines, chronic conditions which do not affect eyes/ vision, and studies that did not describe a transition programme or process. We excluded meta-analyses, systematic and scoping reviews, commentaries and editorials. We also excluded grey literature to focus on peer-reviewed evidence and to ensure consistency in study quality and reporting.

Information sources

A specialist search expert (DB) carried out searches on Ovid Medline (1946-), Ovid Embase (1947-) and Cochrane Library.

Search

The key terms for conducting searches were ‘eye diseases’, ‘transition’‘paediatric’ and ‘adult’. We used Medical Subject Headings (MeSH) and free text terms with all relevant synonyms to develop the search strategies. We also used Boolean operators ‘OR’, ‘AND’ to combine search lines. A more detailed sample search strategy could be viewed in the protocol published on Open Science Framework (https://osf.io/93xcb/files/osfstorage).¹²

Selection of sources of evidence

The search strategist (DB) conducted the search, and we imported the results to Covidence Systematic Review Software (Veritas Health Innovation, Melbourne, Australia) for de-duplication and screening. To ensure consistency among reviewers during title and abstract screening, we carried out a pilot: two reviewers (AK and SB) independently screened the same selection of 20 titles and abstracts from the search based on the eligibility criteria and discussed the results (include/exclude/unsure). They subsequently screened all remaining titles and abstracts, discussed and resolved disagreements within Covidence, with reviewer ADN as mediator when required.

The two reviewers AK and SB then independently scrutinised the full texts for inclusion using a custom-designed inclusion/ exclusion criteria list within Covidence. We included publications for full-text review where the abstract review indicated ‘unsure’ after discussion. We discussed and resolved disagreements, with ADN as mediator.

Data charting process

We developed a data extraction tool within Covidence. Two reviewers independently extracted data, then discussed and resolved disagreements.

Data items

We extracted publication-identifying information (first author and author contact details, year, title, country), study aims, design, start/ end date, funding sources, conflicts of interest, target population, inclusion/ exclusion criteria, recruitment methods, number of participants and duration of study participation, population demographics (mean age, gender, diagnosis), intervention(s), parameters studied, technology used, summary statistics of intervention parameters outcomes at baseline and follow-up timepoints.

Critical appraisal of individual sources of evidence

In line with guidance for scoping¹³ reviews, we did not carry out a critical appraisal of individual sources.

Synthesis of results

We tabulated the characteristics of included studies (number, geographic distribution, populations, study designs). We then analysed the content and summarised the findings of included studies according to interventions (if any) and outcomes. We did not carry out a quality assessment of included studies, because the objective of this scoping review is to provide a map and overview of the research conducted to date.

Results

Selection of sources of evidence

The search was performed in October 2024 and generated 339 publications (Figure 1). Five duplicates were removed. Screening of titles and abstracts excluded 295 papers; of 39 full texts reviewed, 5 met the inclusion criteria (Table 1).

Figure 1.

PRISMA flowchart of process identification of publications included in this scoping review.

Table 1.

Summary of extracted data.

Study ID	Title	Lead author contact details	Country in which the study conducted	Aim of study	Study design	Start date	End date	Study funding sources	Possible conflicts of interest for study authors	Population description	Inclusion criteria	Exclusion criteria	Method of recruitment of participants	Total number of participants	Intervention	Outcome measures
Uday 2014¹⁴	Glycaemic Control and Microvascular Complications in Adolescents and Young Adults with Type 1 Diabetes: Outcome Following Transfer of Care to Adult Services	Suma Uday	UK	To establish the glycaemic control and rate of microvascular complications in adolescents and young adults with childhood onset type 1 diabetes mellitus (T1DM) before and after transfer from paediatric to adult care at a single centre	Cohort study	August 2009	2012	Nil mentioned	Nil mentioned	Type 1 diabetic	Patients with T1DM currently attending transition clinic and those transferred to adult services between August 2009 and 2012	Nil mentioned	Clinic patients	104	Transition clinic	Glycaemic control and clinic attendance Background retinopathy
Rueter 2021¹⁵	Benchmarking care outcomes for young adults with type 1 diabetes in Australia after transition to adult care	Phidias Rueter	Australia	To determine whether the model of care provided for young people with T1D attending WH improved the frequency of attendance, complications screening and acute care outcomes, as compared with other centres providing care for young adults with T1D across Australia across a diversity of clinical settings	Cohort study	01/01/2017	30/06/2018	Australasian Diabetes Data Network: JDRF Australia, the recipient of the Australian Research Council Special Research Initiative in Type 1 Juvenile Diabetes Research Initiative in Type 1 Juvenile Diabetes Australian National Diabetes Audit: Australian Department of Health	None	Type 1 diabetic patients aged 16–25	WH cohort: All attendees aged 16–25 with T1D of the transition clinic at WH with all visits recorded between 1st Jan 2017 and 30th June 2018 ADDN cohort: All registrants aged 16–25 attending adult hospitals with at least one visit recorded in the Australasian Diabetes Data Network (ADDN) between 1st Jan 2017–30th June 2018 ANDA cohort: All participants with T1D aged 16–25 attending adult centres over 4 consecutive weeks in June 2017 who contributed single visit data to the Australian National Diabetes Audit (ANDA) ‘spot survey’	Data were excluded for participants who were pregnant during the study period or within 6 months of diabetes diagnosis. Data from WH participants were excluded from ADDN and ANDA data extractions	Clinic patients	1604	Transition clinic with a dedicated full-time transition coordinator/ diabetes educator and a youth-friendly clinic environment with clinic hours tailored to young participants. 3 monthly appointments with annual complications screening for retinopathy, neuropathy and nephropathy. Rescheduling of missed appointments within 4 weeks and after-hours telephone support	Hba1c levels, rates of DKA admission/ attendances
Robertson 2018¹⁶	Transition from paediatric to adult ophthalmology services: what matters most to young people with visual impairment	AO Robertson	UK	To identify the transition-related needs of adolescents living with visual impairment	Qualitative research	March 2015	June 2015	Fight for Sight and the UCL Institute of Child Health Research Appeal Trust	None	Adolescents aged between 16 and 18.6 years with VA in the better eye worse than 6/18 (logMAR 0.48) and no other significant sensory, learning, or motor impairment	VI (visual acuity in the better eye Snellen worse than 6/18 or logMAR worse than 0.48). No other significant sensory, learning, or motor impairment. Aged between 16.0 and 18.6 years on date of recruitment (ie spanning the age group at which transition conventionally occurs in the UK National Health Service)		Mail	17		Numbers of participants who had transitioned. Thematic analysis of patients’ experience of transition (eg, age appropriate communication, physical clinical environment, emotional attachment to paediatric services)
Mikola 2022⁷	Transitioning patients with juvenile idiopathic arthritis to adult care: the Nordic experience	Katriina Mikola	Other: Denmark, Finland, Norway and Sweden	To examine the transition rates and disease activity after transition, as well as disease- and health-related outcomes	Cohort study	Not stated	Not stated	The Maire Lisko Foundation and the Finnish Pediatric Research Center. Open access funded by Helsinki University Library	None	All newly diagnosed consecutive JIA patients with disease onset from January 1, 1997 to June 30, 2000	All newly diagnosed consecutive JIA patients with disease onset from January 1, 1997 to June 30, 2000	There were no exclusion criteria, except those 26 patients who were still attending the paediatric unit.	Clinic patients	408		Percentages of JIA patients directly transferred / late transferred / never transferred to a transition clinic Percentage having disease activity at the study visit at 18 year follow up
Howsley 2018¹⁷	Psychosocial Factors Associated With Transition Readiness In Adolescents And Young Adults With Uveitis	Philippa Howsley	UK	To examine the relationships between psychosocial factors and transition readiness in AYA aged 10–25 years diagnosed with uveitis at a single centre	Cross sectional study	Not mentioned	Not mentioned	Nil mentioned	None	AYA aged 10–20 years with uveitis	AYA aged 10–25 years diagnosed with uveitis, attending a hospital eye clinic	-	Clinic patients	32		Psychosocial factors and transition readiness by self-report questionnaires

Characteristics of sources of evidence

The five included studies were published between 2014 and 2022 and were conducted in high-income countries, with three from the United Kingdom. Study designs included three cohort studies, one cross-sectional study, and one qualitative study. The number of participants ranged between 17 and 1604. All but one study was conducted in hospital settings, with three recruiting patients through clinics and two by postal mail.

The studies explored the transition process for children and young people with a range of long-term conditions. Two studies were focused on individuals with type 1 diabetes,^14,15 two were related to rheumatology patients,^7,16 and one on adolescents with visual impairment.¹⁷ The study populations were heterogeneous, with a wide age group of 10 to 25 years.

Transition programmes

Transition programmes varied significantly across studies. Some studies described the use of a structured transition clinic, dedicated coordinators, email support and involvement of a wider multidisciplinary team. In others, the transition process was not clearly outlined. There was also variability among participating centres within studies. In the Nordic study, there were geographical differences in the delivery of transition services and the transition rate.

Clinical and service outcomes

The impact of transition programmes on healthcare outcomes appears to be variable. Patient engagement metrics, such as screening rates and loss to follow-up, appear to be better for individuals in transition programmes. There appears to be limited evidence of improvement in clinical outcomes, such as disease activity and glycaemic control. In Mikola's cohort study, the prevalence of JIA-related uveitis was lowest in the ‘not transferred’ group; only 9% (n = 18) had a history of uveitis, compared to twenty-five percent (n = 41) of the directly transferred patients, and 30% (n = 15) of those who were referred later. It was suggested that the patients undergoing transition were more likely to have more active or advanced disease, but further work is needed to explore this association.

Psychosocial factors

Psychosocial factors were explored to assess correlation with readiness and experience with the transition process. Greater transition readiness was found to be associated with better psychosocial quality of life, physical quality of life and social support, and lower anxiety/ depression levels, highlighting the need for psychosocial needs to be managed alongside medical needs. Qualitative data revealed that age-appropriate communication and the clinic environment were associated with greater confidence in managing health care as an adult.

Discussion

Despite increasing recognition of the importance of transition programmes for young people, this review did not identify any publications describing a transition programme for young people moving from children's to adult eye care services. This signifies an unmet research need, especially given that many chronic conditions affect vision from childhood and can result in considerable visual morbidity going into adulthood.

The studies we identified presented transition programmes for young people with chronic systemic medical conditions with ophthalmic manifestations such as type 1 diabetes and JIA. Studies reported both clinical outcomes, such as disease control and rate of complications, as well as psychosocial needs and transition readiness. Three studies included an intervention, typically a specialist clinic with multi-disciplinary input. There was heterogeneity in the age of the population included, highlighting the wide classification of the timing of the transitionary period in children. This limits comparability between studies and presents a challenge for standardisation of the transition process. As transition readiness is likely to vary between individuals, there may be a need for formalised assessment protocols to ascertain the timing of transition.

The lack of ophthalmology-specific transition programmes suggests that other specialities, such as diabetes and endocrinology, are more advanced in developing and establishing these programmes. However, the core elements of transition programmes are not unique to particular specialities, as the main goal is to enable young people to understand their condition and its management, engage with healthcare providers, and take control of medication adherence and hospital visits.¹⁸ A transition programme for children and young people attending eye care services could therefore draw on existing models. This could include specialist transition clinics, with allocated coordinators and multidisciplinary staff.

Future research should focus on the development of ophthalmology-specific programmes, with particular evaluation of their impact on service delivery, patient and staff experience and clinical outcomes.¹⁹ There should also be an emphasis on meeting individual psychosocial needs to optimise transition readiness and improve their self-efficacy and knowledge. A greater consensus is required to standardise the transition process, including optimal timing and core components of transition care.

As this is a scoping review, no quality assessment or evaluation of the risk of bias in the literature was performed. Additionally, only a small number of studies were identified, all in high-income settings with varying outcomes, which may limit the generalisability of the findings. However, this review has provided useful insight by identifying gaps in the current literature to guide further research and clinical reports.

Conclusion

Transition programmes play a key role in providing development-appropriate care for young people with chronic ocular conditions and have the potential to improve long-term outcomes. However, ophthalmology-specific evidence to inform best practice is lacking. Further research is needed to support the implementation and evaluation of transition programmes with chronic eye conditions.

Footnotes

ORCID iDs

Ameeta Kumar

Annegret H Dahlmann-Noor

Ethical considerations

Not applicable.

Consent to participate

Not applicable.

Consent for publication

Not applicable.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study did not receive specific funding. ADN is supported by the NIHR Moorfields Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

Nardone

Martinelli

de Sire

, et al. Time to grow up: readiness associated with improved clinical outcomes in pediatric inflammatory bowel disease patients undergoing transition. Therap Adv Gastroenterol 2024; 17. DOI: https://doi.org/10.1177/17562848241241234.

Campbell

Biggs

Aldiss

, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev 2016: CD009794.

Wakimizu

Sasaki

Yoshimoto

, et al. Multidisciplinary Approach for Adult Patients With Childhood-Onset Chronic Disease Focusing on Promoting Pediatric to Adult Healthcare Transition Interventions: An Updated Systematic Review. Front Pediatr 14 June 2022; 10. Epub ahead of print. DOI: https://doi.org/10.3389/fped.2022.919865.

Schmidt

Markwart

Bomba

, et al. Differential effect of a patient-education transition intervention in adolescents with IBD vs. diabetes. Eur J Pediatr 2018; 177: 497–505.

Steinbeck

Shrewsbury

Harvey

, et al. A pilot randomized controlled trial of a post-discharge program to support emerging adults with type 1 diabetes mellitus transition from pediatric to adult care. Pediatr Diabetes 2015; 16: 634–639.

Hilderson

Moons

Van der Elst

, et al. The clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: results of the DON’T RETARD project. Rheumatology 2016; 55: 133–142.

Mikola

Rebane

Arnstad

, et al. Transitioning patients with juvenile idiopathic arthritis to adult care: the Nordic experience. Pediatric Rheumatology 2022; 20: 84.

McDonagh

Farre

. Are we there yet? An update on transitional care in rheumatology. Arthritis Res Ther 2018; 20: 5.

Vernon-Roberts

Chan

Christensen

, et al. Transitional care of adolescents with inflammatory bowel disease to adult services varies widely across Australia and New Zealand. JGH Open 2024; 8: e13032.

10.

The National Confidential Enquiry into Patient Outcome and Death. The Inbetweeners. London, www.hqip.org.uk/national-programmes. (2023, accessed 24 August 2024).

11.

Peters

MDJ

Marnie

Tricco

, et al. Updated methodological guidance for the conduct of scoping reviews. JBI Evid Synth 2020; 18: 2119–2126.

12.

Kumar

Balendra

Desta

, et al. Transition programmes for children moving from paediatric to adult services in eye and vision health: A scoping review. Open Science Foundation. https://osf.io/93xcb/ (2024, accessed 17 February 2025)

13.

Tricco

Lillie

Zarin

, et al. PRISMA Extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med 2018; 169: 467–473.

14.

Uday

Campbell

Yong

, et al. Glycaemic control and microvascular complications in adolescents and young adults with type 1 diabetes: outcome following transfer of care to adult services. Horm Res Paediatr 2014; 82: 1–507.

15.

Rueter

Farrell

Phelan

, et al. Benchmarking care outcomes for young adults with type 1 diabetes in Australia after transition to adult care. Endocrinol Diabetes Metab 2021; 4: e00295.

16.

Howsley

Dunkley

Calvert

, et al. Psychosocial factors associated with transition readiness in adolescents and young adults with uveitis. Rheumatology 2018; 57: 24.

17.

Robertson

Tadić

Rahi

. Transition from paediatric to adult ophthalmology services: what matters most to young people with visual impairment. Eye 2018; 32: 406–414.

18.

Nagra

McGinnity

Davis

, et al. Implementing transition: ready steady go. Arch Dis Child Educ Pract Ed 2015; 100: 313–320.

19.

Evaluating Improvement, www.institute.nhs.uk/improvementguides (accessed 17 February 2025).