Patient Perspective Workshop: Moving Towards OMERACT Guidelines for Choosing or Developing Instruments to Measure Patient-Reported Outcomes

Kirwan, John R.; Fries, James F.; Hewlett, Sarah; Osborne, Richard H.; Newman, Stanton; Ciciriello, Sabina; Laar, Mart A F J van de; Dures, Emma; Minnock, Patricia; Heiberg, Turid; Sanderson, Tessa; Flurey, Caroline; Leong, Amy L.; Montie, Pamela; Richards, P. Scott

doi:10.3899/jrheum.110391

Cited by 35 publications

(29 citation statements)

References 26 publications

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“…This begins at the conceptualisation phase, moves through discovery and validation, and culminates in the reporting of research findings. Patients have played substantial roles in the formulation of research goals, providing ongoing input to the research process, data analysis and interpretation (including review of transcripts from qualitative research), and presenting study data as abstracts, oral presentations and manuscripts 2 4 16 27. The highest level of evidence to determine the ‘truth’ of a measure, especially one that is patient reported, would require the continuous involvement of patients at all levels of measure development and testing, recognising patients' voices as a requisite gold standard.…”

mentioning

confidence: 99%

The importance of patient participation in measuring rheumatoid arthritis flares

2012

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confidence: 99%

The importance of patient participation in measuring rheumatoid arthritis flares

2012

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“…None of the extant measures had been developed following the currently recommended qualitative methodology outlined by OMERACT and other groups for domain identification and prioritization (8–11). …”

Section: Introductionmentioning

confidence: 99%

Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study

Park

Mecoli²,

Alexanderson³

et al. 2017

J Rheumatol

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Objective. To define a set of core patient-reported domains and respective instruments for use in idiopathic inflammatory myopathies (IIM). Previously, we reported a systematic literature review on patient reported outcomes (PROs) in IIM followed by conducting international focus groups to elicit patient perspectives of myositis symptoms and impacts. Methods. Based on qualitative content analysis of focus groups, an initial list of 26 candidate domains was constructed. We subsequently conducted an international modified Delphi survey to identify the importance of each of the 26 domains. Participants were asked to rate each domain on a scale of 0–10 (0 = not important, 10 = very important). Results. In this first round of Delphi survey, 643 patients participated from the USA (n=543), Sweden (n=49) and South Korea (n=51). Of the 26 domains, 19 (73%) were rated of high importance (≥ 7/10). The top 5 rated domains were muscle symptoms, fatigue, interactions with healthcare, medication side effects, and pain. During OMERACT 2016, we discussed the goal for ultimate reduction in the number of domains, and the importance of considering representation of healthcare providers from other specialties, caregivers, representatives of pharmaceutical industries, and regulatory authorities in the next rounds of Delphi to represent broader perspectives on the IIM. Conclusions. Further prioritization and a reduction in the number of domains will be needed for the next Delphi. At the next biennial OMERACT meeting, we aim to present and seek voting on a Myositis Preliminary PRO Core Set to enable ultimate measure selection and development.

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“…Increasingly, initiatives are being set up in different sectors of health care to drive forward the development and the use of PRO measures (PROMs). Such initiatives to date have been in different fields of medicine including oncology, surgery and rheumatology, with a focus mostly on disease-specific tools [1]-[3]. Furthermore, established standardized instruments such as the Short Form 36 (SF-36), EQ-5D or WHOQOL-BREF [4] assess general health status or quality of life.…”

Section: Introductionmentioning

confidence: 99%

A brief patient-reported outcome instrument for primary care: German translation and validation of the Measure Yourself Medical Outcome Profile (MYMOP)

Hermann

Herrmann

Joos

2014

Health Qual Life Outcomes

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BackgroundMeasure Yourself Medical Outcome Profile (MYMOP) is a patient-generated outcome instrument capable of measuring effects from a wide range of health care interventions. This paper reports the translation of this instrument into German (MYMOP-D) and the assessment of validity and sensitivity to change for the MYMOP-D. The instrument was piloted in a German primary care context.MethodsThe translation process was conducted according to international guidelines. Recruited patients of both general practitioners and non-medical Complementary and Alternative Medicine (CAM) practitioners (“Heilpraktiker”) in the German state of Baden-Wuerttemberg completed a questionnaire comprised of the MYMOP-D and the EQ-5D. Responses were analysed to assess construct validity. For assessing the instrument’s sensitivity to change, patients received the MYMOP-D again after four weeks at which point they were also asked for their subjective views on change of symptoms. Correlation between MYMOP-D and EQ-5D and sensitivity to change as gradient in score change and as standardized response mean (SRM) were calculated.Results476 patients from general practices and 91 patients of CAM practitioners were included. Construct validity of the MYMOP-D was given with a correlation of r = .47 with the EQ-5D. Sensitivity to change for subjective change of symptoms could only be analysed for improvement or no change of symptoms, as only 12 patients reported deterioration of symptoms. Results showed the expected smooth gradient with 2.2, 1.3, and 0.5 points of change for large, little improvement and no change, respectively. SRM for MYMOP-D Profile Score was 0.88.ConclusionsThe MYMOP-D shows excellent construct validity. It is able to detect changes when symptoms in patients improve or remain unchanged. Deterioration of symptoms could not be evaluated due to too few data. With its brevity and simplicity, it might be an important tool for enhancing patient-centred care in the German health care context.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-014-0112-5) contains supplementary material, which is available to authorized users.

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Patient Perspective Workshop: Moving Towards OMERACT Guidelines for Choosing or Developing Instruments to Measure Patient-Reported Outcomes

Cited by 35 publications

References 26 publications

The importance of patient participation in measuring rheumatoid arthritis flares

The importance of patient participation in measuring rheumatoid arthritis flares

Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study

A brief patient-reported outcome instrument for primary care: German translation and validation of the Measure Yourself Medical Outcome Profile (MYMOP)

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