Cai, Ran A. ORCID: https://orcid.org/0000-0001-9278-8066, Chaplin, Hema, Livermore, Polly, Lee, Martin, Sen, Debajit, Wedderburn, Lucy R., Wilkinson, Nick, Jeffery, Rachel, Kempa, Andrea, Norton, Imogen, Tattersall, Rachel, Ioannou, Yiannis and Eleftheriou, Despina (2019) Development of a benchmarking toolkit for adolescent and young adult rheumatology services (BeTAR). Pediatric Rheumatology, 17 (1):23. ISSN 1546-0096 (Online) (doi:10.1186/s12969-019-0323-8)

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Abstract

Background:
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. 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.

Methods:
A 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.

Results:
Thirty 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.

Conclusions:
A 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.

Item Type:	Article
Additional Information:	Open Access. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Uncontrolled Keywords:	adolescent rheumatology, standards of care, benchmarking, quality improvement, healthcare services, patient involvement, toolkit
Subjects:	B Philosophy. Psychology. Religion > BF Psychology
Faculty / School / Research Centre / Research Group:	Faculty of Education, Health & Human Sciences Faculty of Education, Health & Human Sciences > School of Human Sciences (HUM)
Last Modified:	30 Apr 2020 15:07
URI:	http://gala.gre.ac.uk/id/eprint/26487

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