Development of a Benchmarking Toolkit for Adolescent and Young Adult Rheumatology Services (BeTAR)

Overview

Journal Pediatr Rheumatol Online J

Publisher Biomed Central

Specialty Pediatrics

Date 2019 May 23

PMID 31113443

Citations 3

Authors

Ran A Cai

Hema Chaplin

Polly Livermore

Martin Lee

Debajit Sen

Lucy R Wedderburn

Nick Wilkinson

Rachel Jeffery

Andrea Kempa

Imogen Norton

Rachel Tattersall

Yiannis Ioannou

Despina Eleftheriou

Affiliations

Soon will be listed here.

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.

Citing Articles

Developmentally appropriate transitional care during the Covid-19 pandemic for young people with juvenile-onset rheumatic and musculoskeletal diseases: the rationale for a position statement.

McDonagh J, Tattersall R, Clinch J, Swan J, Foster H, McCann L Pediatr Rheumatol Online J. 2021; 19(1):136.

PMID: 34433477 PMC: 8386148. DOI: 10.1186/s12969-021-00609-y.

Young Minds: Mental Health and Transitional Care in Adolescent and Young Adult Rheumatology.

Palman J, McDonagh J Open Access Rheumatol. 2020; 12:309-321.

PMID: 33324121 PMC: 7732171. DOI: 10.2147/OARRR.S228083.

Transitional Care in Rheumatology: a Review of the Literature from the Past 5 Years.

McDonagh J, Farre A Curr Rheumatol Rep. 2019; 21(10):57.

PMID: 31492991 PMC: 6731189. DOI: 10.1007/s11926-019-0855-4.

References

Christie D, Viner R . Adolescent development. BMJ. 2005; 330(7486):301-4. PMC: 548185. DOI: 10.1136/bmj.330.7486.301. View

McDonagh J . Growing up and moving on: transition from pediatric to adult care. Pediatr Transplant. 2005; 9(3):364-72. DOI: 10.1111/j.1399-3046.2004.00287.x. View

Hsieh H, Shannon S . Three approaches to qualitative content analysis. Qual Health Res. 2005; 15(9):1277-88. DOI: 10.1177/1049732305276687. View

Suhonen R, Valimaki M, Katajisto J, Leino-Kilpi H . Provision of individualised care improves hospital patient outcomes: an explanatory model using LISREL. Int J Nurs Stud. 2006; 44(2):197-207. DOI: 10.1016/j.ijnurstu.2005.11.030. View

Bate P, Robert G . Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Qual Saf Health Care. 2006; 15(5):307-10. PMC: 2565809. DOI: 10.1136/qshc.2005.016527. View

McDonagh J . Young people first, juvenile idiopathic arthritis second: transitional care in rheumatology. Arthritis Rheum. 2008; 59(8):1162-70. DOI: 10.1002/art.23928. View

Christodoulou C, Junghaenel D, DeWalt D, Rothrock N, Stone A . Cognitive interviewing in the evaluation of fatigue items: results from the patient-reported outcomes measurement information system (PROMIS). Qual Life Res. 2008; 17(10):1239-46. PMC: 2938781. DOI: 10.1007/s11136-008-9402-x. View

Flesch R . A new readability yardstick. J Appl Psychol. 1948; 32(3):221-33. DOI: 10.1037/h0057532. View

Somerville L, Jones R, Casey B . A time of change: behavioral and neural correlates of adolescent sensitivity to appetitive and aversive environmental cues. Brain Cogn. 2009; 72(1):124-33. PMC: 2814936. DOI: 10.1016/j.bandc.2009.07.003. View

10.

Davies K, Cleary G, Foster H, Hutchinson E, Baildam E . BSPAR Standards of Care for children and young people with juvenile idiopathic arthritis. Rheumatology (Oxford). 2010; 49(7):1406-8. DOI: 10.1093/rheumatology/kep460. View

11.

Lovell D, Passo M, Beukelman T, Bowyer S, Gottlieb B, Henrickson M . Measuring process of arthritis care: a proposed set of quality measures for the process of care in juvenile idiopathic arthritis. Arthritis Care Res (Hoboken). 2010; 63(1):10-6. PMC: 3016458. DOI: 10.1002/acr.20348. View

12.

Crowley R, Wolfe I, Lock K, McKee M . Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011; 96(6):548-53. DOI: 10.1136/adc.2010.202473. View

13.

Cooley W, Sagerman P . Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011; 128(1):182-200. DOI: 10.1542/peds.2011-0969. View

14.

Woo P, Petty R . Looking at paediatric rheumatology over the past 50 years. Rheumatology (Oxford). 2011; 50(9):1533-6. DOI: 10.1093/rheumatology/ker254. View

15.

Sonneveld H, Strating M, van Staa A, Nieboer A . Gaps in transitional care: what are the perceptions of adolescents, parents and providers?. Child Care Health Dev. 2012; 39(1):69-80. DOI: 10.1111/j.1365-2214.2011.01354.x. View

16.

Ambresin A, Bennett K, Patton G, Sanci L, Sawyer S . Assessment of youth-friendly health care: a systematic review of indicators drawn from young people's perspectives. J Adolesc Health. 2013; 52(6):670-81. DOI: 10.1016/j.jadohealth.2012.12.014. View

17.

Payne D . Meeting the needs of young people in hospital. Arch Dis Child. 2013; 98(12):930-2. DOI: 10.1136/archdischild-2013-304294. View

18.

Shaw K, Watanabe A, Rankin E, McDonagh J . Walking the talk. Implementation of transitional care guidance in a UK paediatric and a neighbouring adult facility. Child Care Health Dev. 2013; 40(5):663-70. DOI: 10.1111/cch.12110. View

19.

Palinkas L, Horwitz S, Green C, Wisdom J, Duan N, Hoagwood K . Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research. Adm Policy Ment Health. 2013; 42(5):533-44. PMC: 4012002. DOI: 10.1007/s10488-013-0528-y. View

20.

Robertson S, Pryde K, Evans K . Patient involvement in quality improvement: is it time we let children, young people and families take the lead?. Arch Dis Child Educ Pract Ed. 2013; 99(1):23-7. DOI: 10.1136/archdischild-2013-304327. View