Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services

التفاصيل البيبلوغرافية
العنوان: Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services
المؤلفون: Mark S. Pearce, Helen McConachie, Hannah Merrick, Allan Colver, Tim Rapley, Rose Mary Watson, Jeremy R. Parr, Ann Le Couteur, Luke Vale, Mark Deverill
المصدر: BMC Public Health
بيانات النشر: Springer Nature
مصطلحات موضوعية: Gerontology, Adult, Male, Coping (psychology), medicine.medical_specialty, Longitudinal study, Transition to Adult Care, Adolescent, media_common.quotation_subject, Chronic illness, B700, Study Protocol, Surveys and Questionnaires, Epidemiology, medicine, Protocol, Diabetes Mellitus, Humans, Longitudinal Studies, Evaluation, Adult health, Health needs, media_common, Health Services Needs and Demand, Disability, business.industry, Public health, Cerebral Palsy, Public Health, Environmental and Occupational Health, Adolescence, B900, Negotiation, Child Development Disorders, Pervasive, Child, Preschool, Transition, Quality of Life, Female, Biostatistics, business
الوصف: Background: Young people with complex health needs have impairments that can limit their ability to carry out day-to-day activities. As well as coping with other developmental transitions, these young people must negotiate the transfer of their clinical care from child to adult services. The process of transition may not be smooth and both health and social outcomes may suffer. Increasingly, policy-makers have recognised the need to ensure a smoother transition between children's and adult services, with processes that are holistic, individualised, and person-centred; however, there is little outcome data to support proposed models of care. This study aims to identify the features of transitional care that are potentially effective and efficient for young people with complex health needs making their transition.\ud \ud Methods/Design: Longitudinal cohort study. 450 young people aged 14 years to 18 years 11 months (with autism spectrum disorder and an additional mental health problem, cerebral palsy or diabetes) will be followed through their transition from child to adult services and will contribute data at baseline, 12, 24 and 36 months. We will collect data on: health and wellbeing outcomes (participation, quality of life, satisfaction with services, generic health status (EQ-5D-Y) and condition specific measure of disease control or management); exposure to proposed beneficial features of services (such as having a key worker, appropriate involvement of parents); socio-economic characteristics of the sample; use of condition-related health and personal social services; preferences for the characteristics of transitional care. We will use regression techniques to explore how outcomes vary by exposure to service features and by characteristics of the young people. These data will populate a decision-analytic model comparing the costs and benefits of potential alternative ways of organising transition services. In order to better understand mechanisms and aid interpretation, we will undertake qualitative work with 15 young people, including interviews, non-participant observation and diary collection.\ud \ud Discussion: This study will evaluate the effect of service components of transitional care, rather than evaluation of specific models that may be unsustainable or not generalisable. It has been developed in response to numerous national and international calls for such evaluation.
وصف الملف: application/pdf
اللغة: English
تدمد: 1471-2458
DOI: 10.1186/1471-2458-13-675
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::eba9be4c2f8b425191aac22022fcf9e0Test
حقوق: OPEN
رقم الانضمام: edsair.doi.dedup.....eba9be4c2f8b425191aac22022fcf9e0
قاعدة البيانات: OpenAIRE
الوصف
تدمد:14712458
DOI:10.1186/1471-2458-13-675