Abstract
BackgroundYoung people (YP; 12–24 years old) with rheumatic diseases face many challenges associated with chronic illness in addition to the physiological and psychosocial changes of adolescence. Timely access to developmentally appropriate multidisciplinary care is key to successfully managing rheumatic diseases, but gaps in the care of this vulnerable age group still exist. This study aimed to develop a benchmarking toolkit to enable comparative evaluation of YP rheumatology services in order to promote best practice and reduce variations in service delivery.MethodsA staged and consultative method was used across a broad group of stakeholders in the UK (YP, parents/other carers, and healthcare professionals, HCPs) to develop this toolkit, with reference to pre-existing standards of YP-friendly healthcare. Eighty-seven YP (median age 19 years, range 12–24 years) and 26 rheumatology HCPs with 1–34 years of experience caring for YP have participated.ResultsThirty quality criteria were identified, which were grouped into four main domains: assessment and treatment, information and involvement, accessibility and environment, and continuity of care. Two toolkit versions, one to be completed by HCPs and one to be completed by patients, were developed. These were further refined by relevant groups and face validity was confirmed.ConclusionsA toolkit has been developed to systematically evaluate and benchmark YP rheumatology services, which is key in setting standards of care, identifying targets for improvement and facilitating research. Engagement from YP, clinical teams, and commissioners with this tool should facilitate investigation of variability in levels of care and drive quality improvement.
Highlights
Young people (YP; 12–24 years old) with rheumatic diseases face many challenges associated with chronic illness in addition to the physiological and psychosocial changes of adolescence
48 distinct criteria pertaining to quality of healthcare services for YP in rheumatology services were extracted from these articles and were grouped into 6 themes: provision of information or education, preparation for transition to adulthood, staff expertise/support, YP involvement, service efficiency, and service accessibility
In summary, through a multistage process involving several Focus Group (FG), interviews, consensus meetings, and rating exercises, we developed a toolkit to benchmark and evaluate YP rheumatology services
Summary
Young people (YP; 12–24 years old) with rheumatic diseases face many challenges associated with chronic illness in addition to the physiological and psychosocial changes of adolescence. Advances in the field of paediatric and adolescent rheumatology over the past decade have decreased long-term morbidity and mortality rates [1] This has resulted in a greater number of children with rheumatic diseases surviving into adulthood and having to negotiate transitions into adult services. Unmet needs of YP with rheumatic diseases and gaps in care, at transfer to adult healthcare provision, are still reported worldwide [9,10,11] This is despite published guidelines for how to provide YP-friendly services [12,13,14,15,16,17,18] and the solid evidence base supporting the positive outcomes of planned and individualised developmentally appropriate care for YP [2, 6,7,8]
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