Patient-centred standards of care for adults with myositis

BMC Rheumatology

Paula Jordan¹  Mark E. Roberts²  Robert G. Cooper³  James B. Lilleker⁴  Janine A. Lamb⁵  Patrick Gordon⁷  Heidi Lempp⁸  Hector Chinoy⁹ 

[1] Medicine, King’Academic Rheumatology, Faculty of Life Sciences &Centre for Integrated Genomic Medical Research, School of Health Sciences, Faculty of Biology Medicine and Health, The University of Manchester, Manchester, UK;Greater Manchester Neuroscience Centre, Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Salford, UK;King’MRC-ARUK Institute for Ageing and Chronic Disease, University of Liverpool, Liverpool, UK;NIHR Manchester Biomedical Research Centre, Central Manchester University Hospitals NHS Foundation Trust, The University of Manchester, Manchester, UK;s College Hospital NHS Foundation Trust, London, UK;s College London, London, UK

关键词: Myositis;    Idiopathic inflammatory myopathy;    Delphi process;    Standards of care;    Patient-centred care;    Quality improvement;   

DOI  :  10.1186/s41927-017-0002-7

学科分类：内科医学

来源: BioMed Central

【 摘 要 】

The idiopathic inflammatory myopathies (IIM, myositis) are a heterogeneous group of chronic autoimmune disorders causing considerable physical and mental health impact. There is a lack of formalised guidance defining best practice for the management of myositis, contributing to inconsistent care provision and some patients feeling isolated and unsupported. To address these issues, we evaluated the clinical services available to adults with myositis in the UK. We then created patient-centred standards of care using a structured process involving patients, their relatives and caregivers, physicians and allied healthcare professionals. After an initial focus group, the clinical services available to patients with myositis were evaluated using a patient-completed questionnaire. Draft standards of care were created, each addressing deficits in care provision identified by patients. In response to feedback, including a two-stage modified Delphi exercise, these draft standards were iteratively improved until consensus was reached. Accompanying plain language versions of the standards of care and an audit tool were also created. We identified issues regarding diagnostic pathways, access to specialist services, advice and support regarding employment, medication-related adverse events and the treatment of extra-muscular manifestations. Fifteen standards of care were drafted. After modification, agreement was reached on eleven final standards of care. These patient-centred standards of care for adults with myositis provide a benchmark for the evaluation of local practice. Their implementation will promote consistent good practice across care providers and empower patients when seeking access to local services.

【 授权许可】

CC BY