Development of a benchmarking toolkit for adolescent and young adult rheumatology services (BeTAR)

Pediatric Rheumatology

Hema Chaplin¹  Martin Lee²  Yiannis Ioannou³  Rachel Tattersall⁴  Nick Wilkinson⁵  Ran A. Cai⁶  Debajit Sen⁷  Polly Livermore⁸  Despina Eleftheriou⁹  Lucy R. Wedderburn⁹  Imogen Norton^1,10  Andrea Kempa^1,10  Rachel Jeffery^1,10 

[1] 0000 0001 2322 6764, grid.13097.3c, Health Psychology Section, Psychology Department, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK;0000 0004 0444 2244, grid.420004.2, Rheumatology Department, Newcastle Upon Tyne Hospitals, Newcastle, UK;0000 0004 0612 2754, grid.439749.4, Rheumatology, University College London Hospitals, London, UK;0000 0004 0641 6031, grid.416126.6, Rheumatology Department, Royal Hallamshire Hospital, Sheffield, UK and Sheffield Children’s Hospital, Sheffield, UK;0000 0004 5345 7223, grid.483570.d, Paediatric Rheumatology Department, Evelina London Children’s Hospital, Guys and St Thomas’ NHS Foundation Trust, London, UK;0000000121901201, grid.83440.3b, Arthritis Research UK Centre for Adolescent Rheumatology, University College London, London, UK;0000000121901201, grid.83440.3b, Arthritis Research UK Centre for Adolescent Rheumatology, University College London, London, UK;0000 0004 0612 2754, grid.439749.4, Rheumatology, University College London Hospitals, London, UK;0000000121901201, grid.83440.3b, Arthritis Research UK Centre for Adolescent Rheumatology, University College London, London, UK;0000 0004 5902 9895, grid.424537.3, Paediatric Rheumatology Department, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK;0000000121901201, grid.83440.3b, UCL GOS Institute of Child Health, University College London, London, UK;0000000121901201, grid.83440.3b, Arthritis Research UK Centre for Adolescent Rheumatology, University College London, London, UK;0000000121901201, grid.83440.3b, UCL GOS Institute of Child Health, University College London, London, UK;0000 0001 2116 3923, grid.451056.3, NIHR Biomedical Research Centre, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK;grid.500651.7, Rheumatology, Northampton General Hospital NHS Trust, Northampton, UK;

关键词: Adolescent rheumatology;    Standards of care;    Benchmarking;    Quality improvement;    Healthcare services;    Patient involvement;    Toolkit;   

DOI  :  10.1186/s12969-019-0323-8

来源: publisher

【 摘 要 】

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.

【 授权许可】

CC BY