Outcome Measures in Polymyalgia Rheumatica. A Systematic Review

Duarte, Cátia; Ferreira, Ricardo; McDermott, Michael; Kirwan, John R.; Silva, José António Pereira da

doi:10.3899/jrheum.150515

Cited by 14 publications

(17 citation statements)

References 47 publications

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“…We now need to establish 'how' to best measure these domains. A previous systematic review (Duarte et al, 2015) found a wide range of instruments had been used but was limited in its search strategy and inclusion criteria and did not assess the quality of the evidence found. Furthermore, no review of the evidence for measurement properties of instruments in PMR has been carried out.…”

Section: Introductionmentioning

confidence: 99%

Outcomes Measured in Polymyalgia Rheumatica and Measurement Properties of Instruments Considered for the OMERACT Core Outcome Set: A Systematic Review

et al. 2020

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Objective To systematically identify the outcome measures and instruments used in clinical studies of polymyalgia rheumatica (PMR) and to evaluate evidence about their measurement properties. Methods Searches based on the MeSH term ‘polymyalgia rheumatica’ were carried out in five databases. Two researchers were involved in screening, data extraction and risk of bias assessment. Once outcomes and instruments used were identified and categorised, key instruments were selected for further review through a consensus process. Studies on measurement properties of these instruments were appraised against the COSMIN-OMERACT (Outcome Measures in Rheumatology) checklist to determine the extent of evidence supporting their use in PMR. Results 46 studies were included. In decreasing order of frequency, the most common outcomes (and instruments) used were: markers of systemic inflammation (ESR/CRP), pain (visual analogue scale (VAS)), stiffness (duration in minutes) and physical function (elevation of upper limbs). Instruments selected for further evaluation were ESR, CRP, pain VAS, morning stiffness duration and Health Assessment Questionnaire. Five studies evaluated measurement properties of these instruments, but none met all of the COSMINOMERACT checklist criteria. Conclusion Measurement of outcomes in studies of PMR lacks consistency. The critical patient-centred domain of physical function is poorly assessed. None of the candidate instruments considered for inclusion in the core outcome set had high quality evidence, derived from populations with PMR, on their full range of measurement properties. Further studies are needed to determine whether these instruments are suitable for inclusion in a Core Outcome Measurement set for PMR.

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Section: Introductionmentioning

confidence: 99%

Outcomes Measured in Polymyalgia Rheumatica and Measurement Properties of Instruments Considered for the OMERACT Core Outcome Set: A Systematic Review

et al. 2020

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“…A recent systematic review of outcome measures used in PMR research studies [3] identified a wide variety of instruments in use, none of which were specifically developed to measure symptom burden in patients with PMR. Less than 10% of studies measured physical function, quality of life or fatigue, despite these being important to patients [4].…”

Section: Introductionmentioning

confidence: 99%

Assessment of the face validity, feasibility and utility of a patient-completed questionnaire for polymyalgia rheumatica: a postal survey using the QQ-10 questionnaire

Twohig¹,

Jones²,

McDermott³

et al. 2017

Pilot Feasibility Stud

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BackgroundThe development of a patient-reported outcome measure (PROM) for polymyalgia rheumatica (PMR), a condition that causes pain, stiffness and disability, is necessary as there is no current validated disease-specific measure. Initial literature synthesis and qualitative research established a conceptual framework for the condition along with a list of symptoms and effects of PMR that patients felt were important to them. These findings were used to derive the candidate items for a patient-completed questionnaire. We aim to establish the face validity of this initial “long form” of a PROM.MethodsPeople with a current or previous diagnosis of PMR were recruited both from the community and from rheumatology clinics. They were asked to complete the PMR questionnaire along with the QQ-10 questionnaire, which is a measure used to assess the face validity, feasibility and utility of patient healthcare questionnaires.ResultsA total of 28 participants with an age range of 59–85 years and a length of time since diagnosis from 4 months to 18 years completed the QQ-10. The overall mean “value” score was 79% (SD 12), and the mean “burden” score was 21% (SD 18). The free-text comments were analysed thematically and were found to focus on layout, content, where in the clinical pathway the questionnaire would be most beneficial, specific items missing and other areas for consideration.ConclusionsThe high mean value score and low burden score indicate that the questionnaire has good face validity and is acceptable to patients. The questionnaire now needs to undergo further psychometric evaluation and refinement to develop the final tool for use in clinical practice and research.

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“…This first set was completed by identification of missing items by reviewing the literature, resulting in addition of 6 further items required for calculation of the Charlson Comorbidity Index 31. Existing work on data collection in PMR and RA15–20 revealed another six parameters, namely ethnicity, fatigue, functional capacity, quality of life, morning stiffness and cumulative GC dose. No instruments relating to GCA were found in the EULAR Outcome Measures Library 32.…”

Section: Resultsmentioning

confidence: 99%

“…Search terms included ‘vasculitis’, ‘giant cell arteritis’, ‘polymyalgia rheumatica’ accompanied by ‘outcome measures’, ‘registry’, ‘core data set’, ‘reporting’ and ‘epidemiology’. Potentially relevant domains and items were identified by scanning-related work done in polymyalgia rheumatica (PMR)15–18 and RA 19 20. The compilation of items was also counterchecked with current guidelines on the management of GCA1 21 as well as EULAR, European Vasculitis Society (EUVAS) and European Union Committee of Experts on Rare Diseases (EUCERD) recommendations on data collection and patient registries 22–26.…”

Section: Methodsmentioning

confidence: 99%

2018 EULAR recommendations for a core data set to support observational research and clinical care in giant cell arteritis

Radner

Chatzidionysiou²,

Nikiphorou

et al. 2019

Ann Rheum Dis

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Giant cell arteritis (GCA) represents the most common form of primary systemic vasculitis and is frequently associated with comorbidities related to the disease itself or induced by the treatment. Systematically collected data on disease course, treatment and outcomes of GCA remain scarce. The aim of this EULAR Task Force was to identify a core set of items which can easily be collected by experienced clinicians, in order to facilitate collaborative research into the course and outcomes of GCA. A multidisciplinary EULAR task force group of 20 experts including rheumatologists, internists, epidemiologists and patient representatives was assembled. During a 1-day meeting, breakout groups discussed items from a previously compiled collection of parameters describing GCA status and disease course. Feedback from breakout groups was further discussed. Final consensus was achieved by means of several rounds of email discussions after the meeting. A three-round Delphi survey was conducted to determine a core set of parameters including the level of agreement. 117 parameters were regarded as relevant. Potential items were subdivided into the following categories: General, demographics, GCA-related signs and symptoms, other medical conditions and treatment. Possible instruments and assessment intervals were proposed for documentation of each item. To facilitate implementation of the recommendations in clinical care and clinical research, a minimum core set of 50 parameters was agreed. This proposed core set intends to ensure that relevant items from different GCA registries and databases can be compared for the dual purposes of facilitating clinical research and improving clinical care.

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Outcome Measures in Polymyalgia Rheumatica. A Systematic Review

Cited by 14 publications

References 47 publications

Outcomes Measured in Polymyalgia Rheumatica and Measurement Properties of Instruments Considered for the OMERACT Core Outcome Set: A Systematic Review

Outcomes Measured in Polymyalgia Rheumatica and Measurement Properties of Instruments Considered for the OMERACT Core Outcome Set: A Systematic Review

Assessment of the face validity, feasibility and utility of a patient-completed questionnaire for polymyalgia rheumatica: a postal survey using the QQ-10 questionnaire

2018 EULAR recommendations for a core data set to support observational research and clinical care in giant cell arteritis

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