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. 2017 Nov 28:1:4.
doi: 10.1186/s41927-017-0002-7. eCollection 2017.

Patient-centred standards of care for adults with myositis

James B Lilleker  1   2 , Patrick Gordon  3 , Janine A Lamb  4 , Heidi Lempp  5 , Robert G Cooper  4   6 , Mark E Roberts  1 , Paula Jordan  7 , Hector Chinoy  2   8 ; UK Myositis Network (UKMYONET); Myositis UK
Collaborators, Affiliations

Patient-centred standards of care for adults with myositis

James B Lilleker et al. BMC Rheumatol. .

Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

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

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Conflict of interest statement

We invited members of the charity group Myositis UK to complete a service evaluation questionnaire and in some cases also participate in the Delphi panel and focus group to produce plain-language versions of the standards of care. We used the Health Research Authority (HRA) decision tools (http://www.hra-decisiontools.org.uk/) to determine that our project was not research and that research ethics approval was not required. Participants were not randomised to different groups, no changes to treatment or any other standard clinical care procedures were made or recommended, and the findings were not generalisable (i.e. outcomes are only of interest to the specific clinical area considered). Specific consent for participation was therefore not obtained.Not applicable.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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