TY - JOUR
T1 - Development of a benchmarking toolkit for adolescent and young adult rheumatology services (BeTAR)
AU - Cai, Ran A.
AU - Chaplin, Hema
AU - Livermore, Polly
AU - Lee, Martin
AU - Sen, Debajit
AU - Wedderburn, Lucy R.
AU - Wilkinson, Nick
AU - Jeffery, Rachel
AU - Kempa, Andrea
AU - Norton, Imogen
AU - Tattersall, Rachel
AU - Ioannou, Yiannis
AU - Eleftheriou, Despina
N1 - Funding Information:
This work was supported by the Barbara Ansell National Network for Adolescent Rheumatology in the UK, in partnership with the Centre for Adolescent Rheumatology at UCL UCLH and GOSH, both funded by Arthritis Research UK (ref 20164, 21593 and 21411). LRW and DE are partly funded by the NIHR Biomedical Research Centre at GOSH. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
Publisher Copyright:
© 2019 The Author(s).
PY - 2019/5/21
Y1 - 2019/5/21
N2 - 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.
AB - 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.
KW - Adolescent rheumatology
KW - Benchmarking
KW - Healthcare services
KW - Patient involvement
KW - Quality improvement
KW - Standards of care
KW - Toolkit
UR - http://www.scopus.com/inward/record.url?scp=85066471274&partnerID=8YFLogxK
U2 - 10.1186/s12969-019-0323-8
DO - 10.1186/s12969-019-0323-8
M3 - Article
C2 - 31113443
AN - SCOPUS:85066471274
VL - 17
JO - Pediatric Rheumatology
JF - Pediatric Rheumatology
SN - 1546-0096
IS - 1
M1 - 23
ER -