Young People with Complex Health Needs: Baseline Data from a Longitudinal Study of Transition from Child to Adult Healthcare Services

Friday, May 16, 2014
Atrium Ballroom (Marriott Marquis Atlanta)
A. S. Le Couteur1, H. Merrick2, H. McConachie3, K. D. Mann4, J. Parr5, A. Colver4 and .. Transition Team*6, (1)Institute of Health and Society, Newcastle University, Newcastle upon Tyne, United Kingdom, (2)Institute of Health and Society, Newcastle University, Newcastle Upon Tyne, United Kingdom, (3)Institute of Health and Society, Newcastle University, Newcastle, United Kingdom, (4)Institute of Health and Society, Newcastle University, Newcastle, England, (5)Newcastle University, Newcastle Upon Tyne, United Kingdom, (6)Institute of Health and Society, Newcastle Univeristy, Newcastle, United Kingdom

Many young people (YP) with complex health needs (CHN) have poor health and social outcomes following transition from child to adult health services. The influence of transitional care on the wellbeing of young people with CHN and the need to ensure smoother transition processes is recognised in much recent health policy. However, there are limited satisfaction and health outcome data to support proposed models of care.


This 3-year longitudinal study aims to identify the features of transitional care that are acceptable, and potentially effective and efficient for YP with CHN making their health service transition. Here we present the baseline data showing how the experiences of services, participation, and feelings of wellbeing compare between YP with autism spectrum disorder (ASD) with additional mental health problems, YP with cerebral palsy (CP) and YP with diabetes. The literature suggest that transition services in diabetes are better developed than those for YP with CP or ASD; therefore it is hypothesized YP with diabetes will report better experiences with services and greater participation.

Methods:  355 YP aged 14 years to 18 years 11 months have been recruited to this longitudinal study. YP have completed questionnaires on wellbeing (Warwick-Edinburgh Mental Wellbeing Scale), participation (Rotterdam Transition Profile), and satisfaction with services (Mind the Gap).


No differences across groups in the YP’s satisfaction with services were found. However, parents of YP with CP or ASD reported significantly lower satisfaction with service process issues than parents of YP with diabetes. When parent scores were matched and compared to that of their YP, parents reported significantly lower satisfaction with provider characteristics and process issues. YP with diabetes reported greater levels of independence in participation than those with CP or ASD in the majority of domains, including household responsibilities (p=0.001), social activities (p<0.001) and decisions about healthcare needs (p<0.001). YP with ASD reported significantly lower wellbeing scores than those with CP or diabetes (p<0.001).


The YP in all groups reported similar experiences of services but significantly greater satisfaction with the process of care and the provider’s interpersonal style than their parents. Regarding participation, the YP with diabetes have made greater progress in their planning for adult healthcare and independent skills, compared with YP with CP or ASD .  The study will continue to track relationships between YP’s experience of transitional health care and influences on their wellbeing and participation over the next three years.

This abstract presents independent research funded by the National Institute for Health Research NIHR) under the Programme Grants for Applied Research programme: RP-PG-0610-10112. The views expressed in this poster are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

*Transition Team: A, Bilson., S, Bruce., T, Cheetham.,  Z, Huma., C, Maiden., J, Milne., J, Owens., J, Parkes., M, Pearce., N, Thalange.

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See more of: Services