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Quality improvement in juvenile idiopathic arthritis: a mixed-methods implementation pilot of the CAPTURE-JIA dataset.
McErlane, Flora; Anderson, Chris; Lawson-Tovey, Saskia; Lee, Barbara; Lee, Chris; Lunt, Laura; McDonagh, Janet E; Smith, Andrew D; Smith, Nicola; Cleary, Gavin.
Afiliación
  • McErlane F; Paediatric Rheumatology, Great North Children's Hospital, Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK. f.mcerlane@nhs.net.
  • Anderson C; Institute of Population and Health Sciences, Medical School, Newcastle University, Newcastle upon Tyne, UK. f.mcerlane@nhs.net.
  • Lawson-Tovey S; Appligo Ltd.
  • Lee B; Centre for Genetics and Genomics Versus Arthritis, Centre for Musculoskeletal Research, The University of Manchester, Manchester, UK.
  • Lee C; National Institute of Health Research Manchester Biomedical Research Centre, Manchester Academic Health Science Centre, Manchester University NHS Foundation Trust, Manchester, UK.
  • Lunt L; Appligo Ltd.
  • McDonagh JE; Appligo Ltd.
  • Smith AD; National Institute of Health Research Manchester Biomedical Research Centre, Manchester Academic Health Science Centre, Manchester University NHS Foundation Trust, Manchester, UK.
  • Smith N; Versus Arthritis Centre for Epidemiology, Centre for Musculoskeletal Research, The University of Manchester, Manchester, UK.
  • Cleary G; National Institute of Health Research Manchester Biomedical Research Centre, Manchester Academic Health Science Centre, Manchester University NHS Foundation Trust, Manchester, UK.
Pediatr Rheumatol Online J ; 20(1): 43, 2022 Jun 18.
Article en En | MEDLINE | ID: mdl-35717328
BACKGROUND: A significant proportion of children and young people with juvenile idiopathic arthritis (JIA) do not achieve inactive disease during the first two years following diagnosis. Refinements to clinical care pathways have the potential to improve clinical outcomes but a lack of consistent and contemporaneous clinical data presently precludes standard setting and implementation of meaningful quality improvement programmes. This study was the first to pilot clinical data collection and analysis using the CAPTURE-JIA dataset, and to explore patient and clinician-reported feasibility and acceptability data. METHODS: A multiphase mixed-methods approach enabled prospective collection of quantitative data to examine the feasibility and efficacy of dataset collection and of qualitative data informing the context and processes of implementation. An initial paper pilot informed the design of a bespoke electronic data collection system (the Agileware system), with a subsequent electronic pilot informing the final CAPTURE-JIA data collection tool. RESULTS: Paper collection of patient data was feasible but time-consuming in the clinical setting. Phase 1 paper pilot data (121 patients) identified three themes: problematic data items (14/62 data items received >40% missing data), formatting of data collection forms and a clinician-highlighted need for digital data collection, informing Phase 2 electronic data collection tool development. Patients and families were universally supportive of the collection and analysis of anonymised patient data to inform clinical care. No apparent preference for paper / electronic data collection was reported by families. Phase 3 electronic pilot data (38 patients) appeared complete and the system reported to be easy to use. Analysis of the study dataset and a dummy longitudinal dataset confirmed that all eleven JIA national audit questions can be answered using the electronic system. CONCLUSIONS: Multicentre CAPTURE-JIA data collection is feasible and acceptable, with a bespoke data collection system highlighted as the most satisfactory solution. The study is informing ongoing work towards a streamlined and flexible national paediatric data collection system to drive quality improvement in clinical care.
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Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Artritis Juvenil Tipo de estudio: Clinical_trials / Diagnostic_studies / Guideline / Observational_studies / Prognostic_studies / Qualitative_research Límite: Adolescent / Child / Humans Idioma: En Revista: Pediatr Rheumatol Online J Año: 2022 Tipo del documento: Article

Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Artritis Juvenil Tipo de estudio: Clinical_trials / Diagnostic_studies / Guideline / Observational_studies / Prognostic_studies / Qualitative_research Límite: Adolescent / Child / Humans Idioma: En Revista: Pediatr Rheumatol Online J Año: 2022 Tipo del documento: Article