Characteristics of young people with long term conditions close to transfer to adult health services

Merrick, Hannah, McConachie, Helen, Le Couteur, Ann, Mann, Kay, Parr, Jeremy R, Pearce, Mark S, Colver, Allan, Transition Collaborative Group and Owens, Julie-Anne 2015, Characteristics of young people with long term conditions close to transfer to adult health services, BMC health services research, vol. 15, pp. 1-11, doi: 10.1186/s12913-015-1095-6.

Attached Files
Name Description MIMEType Size Downloads

Title Characteristics of young people with long term conditions close to transfer to adult health services
Author(s) Merrick, Hannah
McConachie, Helen
Le Couteur, Ann
Mann, Kay
Parr, Jeremy R
Pearce, Mark S
Colver, Allan
Transition Collaborative Group
Owens, Julie-AnneORCID iD for Owens, Julie-Anne
Journal name BMC health services research
Volume number 15
Article ID 435
Start page 1
End page 11
Total pages 11
Publisher BioMed Central
Place of publication London, Eng.
Publication date 2015-09-30
ISSN 1472-6963
Keyword(s) Adolescent
Autism Spectrum Disorder
Cerebral Palsy
Diabetes Mellitus
Educational Status
Health Services
Health Status
Long-Term Care
Mental Disorders
Mental Health
Patient Satisfaction
Surveys and Questionnaires
Transition to Adult Care
Young people
Complex health needs
Long term conditions
Satisfaction with services
Transition Collaborative Group
Summary BACKGROUND: For 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. METHODS: Young 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. RESULTS: Three 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). CONCLUSIONS: Having 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.
Language eng
DOI 10.1186/s12913-015-1095-6
Field of Research 1117 Public Health And Health Services
0807 Library And Information Studies
HERDC Research category C1.1 Refereed article in a scholarly journal
Copyright notice ©2015, Merrick et al.
Persistent URL

Document type: Journal Article
Collections: Office of the Deputy Vice-Chancellor Research
Open Access Checking
Connect to link resolver
Unless expressly stated otherwise, the copyright for items in DRO is owned by the author, with all rights reserved.

Version Filter Type
Citation counts: TR Web of Science Citation Count  Cited 0 times in TR Web of Science
Scopus Citation Count Cited 8 times in Scopus
Google Scholar Search Google Scholar
Access Statistics: 23 Abstract Views, 2 File Downloads  -  Detailed Statistics
Created: Fri, 08 Mar 2019, 08:14:09 EST

Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact