ArticleBMC health services research2015
Characteristics of young people with long term conditions close to transfer to adult health services.
Article in BMC health services research, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
9 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2023Pooled it
- 'Mind the Gap'-A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability.Journal of intellectual disability research : JIDR · 2025Article
- Patient and parent perspectives on an academic rheumatology transition clinic.Health care transitions · 2025Article
- Demographic, clinical, and service-use characteristics related to the clinician's recommendation to transition from child to adult mental health services.Social psychiatry and psychiatric epidemiology · 2022Article
- A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions.BMC medicine · 2018Observational
- A longitudinal, observational study examining the relationships of patient satisfaction with services and mental well-being to their clinical course in young people with Type 1 diabetes mellitus during transition from child to adult health services.Diabetic medicine : a journal of the British Diabetic Association · 2018Article
- Are the health needs of young people with cerebral palsy met during transition from child to adult health care?Child: care, health and development · 2018Article
- Current characteristics, challenges and coping strategies of young people with cystic fibrosis as they transition to adulthood.Clinical medicine (London, England) · 2017Article
- Bridging the gap: metabolic and endocrine care of patients during transition.Endocrine connections · 2016Review
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Authors and funding
8 authors.
Funding
Abstract
backgroundFor many young people with long term conditions (LTC), transferring from paediatric to adult health services can be difficult and outcomes are often reported to be poor. We report the characteristics and representativeness of three groups of young people with LTCs as they approach transfer to adult services: those with autism spectrum disorder with additional mental health problems (ASD); cerebral palsy (CP); or diabetes.
methodsYoung people aged 14 years-18 years 11 months with ASD, or those with diabetes were identified from children's services and those with CP from population databases. Questionnaires, completed by the young person and a parent, included the 'Mind the Gap' Scale, the Rotterdam Transition Profile, and the Warwick and Edinburgh Mental Wellbeing Scale.
resultsThree hundred seventy four young people joined the study; 118 with ASD, 106 with CP, and 150 with diabetes. Participants had a significant (p < 0.001) but not substantial difference in socio-economic status (less deprived) compared to those who declined to take part or did not respond. Condition-specific severity of participants was similar to that of population data. Satisfaction with services was good as the 'gap' scores (the difference between their ideal and current care) reported by parents and young people were small. Parents' satisfaction was significantly lower than their children's (p < 0.001). On every domain of the Rotterdam Transition Profile, except for education and employment, significant differences were found between the three groups. A larger proportion of young people with diabetes were in a more independent phase of participation than those with ASD or CP. The wellbeing scores of those with diabetes (median = 53, IQR: 47-58) and CP (median = 53, IQR: 48-60) were similar, and significantly higher than for those with ASD (median = 47, IQR: 41-52; p < 0.001).
conclusionsHaving established that our sample of young people with one of three LTCs recruited close to transfer to adult services was representative, we have described aspects of their satisfaction with services, participation and wellbeing, noting similarities and differences by LTC. This information about levels of current functioning is important for subsequent evaluation of the impact of service features on the health and wellbeing of young people with LTCs following transfer from child services to adult services.
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