Toolkit to benchmark young person friendly services in rheumatology
Research type
Research Study
Full title
Developing a toolkit to benchmark young person friendly services for patients with autoimmune rheumatic disease
IRAS ID
187243
Contact name
Despina Eleftheriou
Contact email
Sponsor organisation
University College London
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Rheumatic diseases in children and young people can cause difficulties in everyday activities and negatively impacts educational, psychosocial, and physical development and wellbeing. Adolescents and young adults (AYA, 10-24 years old) account for around a fifth of the population, and represent a distinct developmental stage that is different to childhood and adulthood. Therefore the needs of AYA with rheumatic diseases are unique as they have to deal with a number of personal and developmental changes such as puberty. Moreover, AYA’s healthcare spans paediatric and adult healthcare services as they grow up and need to take responsibility for managing their own healthcare. This can be difficult without proper guidance and support services. As a consequence, developmentally appropriate clinical care and services that meet the specific needs of young people and their families are imperative in helping to minimize physical and psychosocial harm as patients with rheumatic disease transition from childhood to adulthood. However, research is often constrained to either paediatric or adult settings rather than taking a patient-centered perspective and the evidence base for AYA rheumatology is limited.
Lack of effective commissioning for young person friendly services is a barrier in itself to such services being developed. A validated tool that can objectively benchmark a service can greatly facilitate the commissioning process, thus ultimately incentivizing service development. In order to promote quality care and research, a validated process reflecting AYA perspectives through which quality of care can be benchmarked needs to be developed. Therefore the current project aims to develop a benchmarking tool that rheumatology departments (both in the paediatric and adult environments) caring for AYA can use to assess their service and demonstrate that high quality care delivery is being met. Facilitating the improvement of clinical care in AYA in rheumatology will ultimately facilitate research.
REC name
HSC REC B
REC reference
15/NI/0207
Date of REC Opinion
28 Sep 2015
REC opinion
Favourable Opinion