Patient-centred Standards of Care for Adults with MyositisCitation formats

  • External authors:
  • Patrick Gordon
  • Heidi Lempp
  • Robert Cooper
  • Mark Roberts
  • Paula Jordan

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Patient-centred Standards of Care for Adults with Myositis. / Lilleker, James; Gordon, Patrick; Lamb, Janine; Lempp, Heidi; Cooper, Robert; Roberts, Mark; Jordan, Paula; Chinoy, Hector.

In: BMC Rheumatology, 2017.

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Author

Lilleker, James ; Gordon, Patrick ; Lamb, Janine ; Lempp, Heidi ; Cooper, Robert ; Roberts, Mark ; Jordan, Paula ; Chinoy, Hector. / Patient-centred Standards of Care for Adults with Myositis. In: BMC Rheumatology. 2017.

Bibtex

@article{c5617039f71444f68ad450712ba07b86,
title = "Patient-centred Standards of Care for Adults with Myositis",
abstract = "BackgroundThe 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.MethodsAfter 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.ResultsWe 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.ConclusionThese 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 = "Myositis, Idiopathic inflammatory myopathy, Delphi process, Standards of care, Patient-centred care, Quality improvement",
author = "James Lilleker and Patrick Gordon and Janine Lamb and Heidi Lempp and Robert Cooper and Mark Roberts and Paula Jordan and Hector Chinoy",
year = "2017",
doi = "10.1186/s41927-017-0002-7",
language = "English",
journal = "BMC Rheumatology",
issn = "2520-1026",
publisher = "Springer Nature",

}

RIS

TY - JOUR

T1 - Patient-centred Standards of Care for Adults with Myositis

AU - Lilleker, James

AU - Gordon, Patrick

AU - Lamb, Janine

AU - Lempp, Heidi

AU - Cooper, Robert

AU - Roberts, Mark

AU - Jordan, Paula

AU - Chinoy, Hector

PY - 2017

Y1 - 2017

N2 - BackgroundThe 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.MethodsAfter 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.ResultsWe 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.ConclusionThese 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.

AB - BackgroundThe 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.MethodsAfter 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.ResultsWe 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.ConclusionThese 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.

KW - Myositis

KW - Idiopathic inflammatory myopathy

KW - Delphi process

KW - Standards of care

KW - Patient-centred care

KW - Quality improvement

U2 - 10.1186/s41927-017-0002-7

DO - 10.1186/s41927-017-0002-7

M3 - Article

JO - BMC Rheumatology

JF - BMC Rheumatology

SN - 2520-1026

ER -