Most evidence about what works in transitional care comes from small studies in single clinical specialties. We tested the hypothesis that exposures to nine recommended features of transitional ...healthcare were associated with better outcomes for young people with long-term conditions during transition from child-centred to adult-oriented health services.
This is a longitudinal, observational cohort study in UK secondary care including 374 young people, aged 14-18.9 years at recruitment, with type 1 diabetes (n = 150), cerebral palsy (n = 106) or autism spectrum disorder with an associated mental health problem (n = 118). All were pre-transfer and without significant learning disability. We approached all young people attending five paediatric diabetes centres, all young people with autism spectrum disorder attending four mental health centres, and randomly selected young people from two population-based cerebral palsy registers. Participants received four home research visits, 1 year apart and 274 participants (73%) completed follow-up. Outcome measures were Warwick Edinburgh Mental Wellbeing Scale, Mind the Gap Scale (satisfaction with services), Rotterdam Transition Profile (Participation) and Autonomy in Appointments.
Exposure to recommended features was 61% for 'coordinated team', 53% for 'age-banded clinic', 48% for 'holistic life-skills training', 42% for 'promotion of health self-efficacy', 40% for 'meeting the adult team before transfer', 34% for 'appropriate parent involvement' and less than 30% for 'written transition plan', 'key worker' and 'transition manager for clinical team'. Three features were strongly associated with improved outcomes. (1) 'Appropriate parent involvement', example association with Wellbeing (b = 4.5, 95% CI 2.0-7.0, p = 0.001); (2) 'Promotion of health self-efficacy', example association with Satisfaction with Services (b = - 0.5, 95% CI - 0.9 to - 0.2, p = 0.006); (3) 'Meeting the adult team before transfer', example associations with Participation (arranging services and aids) (odds ratio 5.2, 95% CI 2.1-12.8, p < 0.001) and with Autonomy in Appointments (average 1.7 points higher, 95% CI 0.8-2.6, p < 0.001). There was slightly less recruitment of participants from areas with greater socioeconomic deprivation, though not with respect to family composition.
Three features of transitional care were associated with improved outcomes. Results are likely to be generalisable because participants had three very different conditions, attending services at many UK sites. Results are relevant for clinicians as well as for commissioners and managers of health services. The challenge of introducing these three features across child and adult healthcare services, and the effects of doing so, should be assessed.
Background The prevalence of Type 1 diabetes is increasing with more children and adolescents being diagnosed with this chronic condition. There has been an increasing focus in recent years on the ...transition through adolescence and supporting young people who have chronic health conditions, with the recognition that young people are at risk of dropping out of healthcare services following transfer from paediatric to adult services. To date, there have been limited evaluations of transition models. The purpose of this study is to evaluate one such model in diabetes, the ‘Transition Pathway’ via interviews with young people who have experienced it first‐hand. The results are discussed in terms of understanding the unique needs of adolescents with regard to psychosocial developmental theory, and what this means for healthcare providers of transition/adolescent services.
Methods Semi‐structured interviews were carried out with 11 young people, two of whom returned a year later for a second interview. Qualitative analysis of these interviews using a ‘Framework’ approach enabled the data to be sorted according to initial themes. Following this, further analysis enabled the identification of ‘super‐ordinate’ or overall themes.
Results Six initial themes emerged from the data. These concerned the transition pathway process, the experience and organization of transfer, organization of services, information and education, the healthcare consultation and the need for services to be inclusive of all young people's needs. From these initial themes, two overall/super‐ordinate themes were identified: the need for transition services to be developmentally appropriate and to be based around individual needs. The consultation experience was central to keeping young people engaged with adolescent healthcare services.
Conclusion Several key elements of adolescent/transition healthcare services have been proposed, one of which is training for professionals delivering the service. This study suggests that communication skills form a vital component of such training.
Managing the multiple demands of a chronic condition whilst negotiating the developmental tasks of adolescence and young adulthood is a process that is neither well described nor understood, ...particularly in relation to providing developmentally appropriate health care for young people. The importance of this issue is starting to be reflected within the literature, and although research into models of service delivery is emerging, a lack of user involvement in service development is apparent. This qualitative, user involvement study aimed to describe and understand the considered opinions of 19 young adults with diabetes who were receiving secondary care services about the provision of diabetes services for young people. The findings, gathered using semistructured interview and focus group methods, have potentially wide‐reaching implications across primary and secondary health care, and across agencies providing services to children and young people, in terms of facilitating a person's transition through adolescence and into young adult life. Participants suggested key issues to address when developing services for young people, including staff consistency, civility, clinic structures which help a person navigate the health care system, provision of age‐specific information, and support in relation to a range of health, emotional, social and developmental needs. Health care professionals can help young people to meet the expectations upon them as autonomous service users by modelling appropriate relationships, helping them to acquire skills and knowledge, and overcome barriers to them becoming active participants in their health care and achieving social participation in a fuller sense. It is somewhat arbitrary to delineate between adolescence and young adulthood in terms of age alone, but in this paper, ‘adolescence’ refers to the period between 11 and 15 years of age, and ‘young adulthood’ between 16 and 25 years of age. The phrase ‘young people’ will also be used to refer to people between 11 and 25 years.
PDF
