“I suddenly felt I’d aged”: A qualitative study of patient experiences of polymyalgia rheumatica (PMR)

Twohig, Helen; Mitchell, Caroline; Mallen, Christian; Adebajo, Adewale; Mathers, Nigel

doi:10.1016/j.pec.2014.12.013

Cited by 32 publications

(26 citation statements)

References 21 publications

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“…This finding is supported by work with patients with PMR who similarly reported that stiffness is not purely experienced in the morning [46] and a recent Delphi study in the development of a core domain set for PMR where patients expressed a preference for 'stiffness' rather than 'morning stiffness' [47]. Work in PMR has also questioned the adequacy of duration as part of stiffness assessment [46]. This was consistent with the patient dislike of duration expressed in this study, and is concerning when considering that stiffness duration items are most frequently implemented in the assessment of stiffness in research trials [12].…”

Section: Discussionsupporting

confidence: 63%

“…However, patient descriptions of stiffness not being exclusively experienced in the morning period challenge this biomedical interpretation in relation to patient-reported assessment of stiffness. This finding is supported by work with patients with PMR who similarly reported that stiffness is not purely experienced in the morning [46] and a recent Delphi study in the development of a core domain set for PMR where patients expressed a preference for 'stiffness' rather than 'morning stiffness' [47]. Work in PMR has also questioned the adequacy of duration as part of stiffness assessment [46].…”

Section: Discussionmentioning

confidence: 89%

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Development and testing of candidate items for inclusion in a new rheumatoid arthritis stiffness patient-reported outcome measure

et al. 2017

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Objective: To qualitatively develop and test a set of candidate items for a new RA stiffness patient-reported outcome measure (PROM) that capture the patient perspective. This is an essential first step in PROM development, prior to quantitative development, assessment and validation.Methods: Focus groups further examined the previously developed stiffness conceptual model and explored the patient perspective regarding stiffness assessment. Data were analysed using thematic analysis. An iterative process of item development was then performed by the expert study team of researchers, patients and clinicians, based on the two qualitative datasets and informed by measurement theory and guidelines. Finally, these candidate items were tested using formal cognitive interview methodology and subsequently refined.Results: Sixteen RA patients from the UK participated in focus groups. Data confirmed the conceptual model of the RA patient experience of stiffness and provided insight into stiffness assessment including suggestions regarding patient-relevant stiffness assessment categories such as impact, location, and timing. These data informed the development of 77 candidate stiffness PROM items, including multiple formats for some. Eleven RA patients participated in cognitive interviews. Minor changes were made to items to enhance understanding and 32 items were removed, resulting in 45 candidate PROM items. Conclusion:Rigorous qualitative methodology and considerable patient involvement has underpinned items for a new RA stiffness PROM with strong content validity. Crucially, patient involvement broadened assessment beyond 'early morning stiffness duration,' which may address existing PROM limitations. Items are now suitable for quantitative item reduction, structural development of the final PROM, and validation.

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Section: Discussionsupporting

confidence: 63%

Section: Discussionmentioning

confidence: 89%

Development and testing of candidate items for inclusion in a new rheumatoid arthritis stiffness patient-reported outcome measure

et al. 2017

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“…Further work, including a Delphi survey conducted by the OMERACT PMR Working Group, highlighted the need for a disease-specific outcome measure that would cover domains of life impact relevant to patients [5]. Applying international guidelines for patient-reported outcome measure (PROM) development [6], we carried out initial qualitative work with patients with PMR to better understand patient experience of the condition and establish a conceptual framework for a future PMR PROM [7]. Here, we report the next steps taken to derive a “long-list” of candidate items for a PMR-specific PROM and the assessment of face validity, feasibility and utility both in the participants of the original study and in a separate group of patients, using a validated method, the QQ-10 questionnaire [8].…”

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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“…Studies have highlighted the fact that treatment duration exceeds 3 years in more than 40% of patients (9) and in only about half of the population GCs are discontinued after 2 years of treatment (10). The myth of full resolution of symptoms with steroid treatment is challenged by patients' perspectives (11). The prevailing clinical opinion of rapid and complete steroid responsiveness is disputed by observational studies showing that complete response, assessed according to study-defined improvement in PMR visual assessment scale (VAS), improvement in morning stiffness and normalization of inflammatory markers, is only obtained in a minority (8%) by week one, less than 50% by week 3 and in a little more than half of the patients by week 4 (5,12).…”

Section: N the Need Of An Optimal Framework For The Development Of Efmentioning

confidence: 99%

Perspectives and unmet needs in polymyalgia rheumatica. Providing the fundamental framework for the development of new treatment regimes in polymyalgia rheumatica

Nielsen

Dasgupta

2018

Reumatismo

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SUMMARYPolymyalgia rheumatica is effectively treated with glucocorticoids. However, glucocorticoid treatment can cause numerous and potentially serious side effects. Therefore, lowest effective dose and shortest duration to control disease is aimed for and glucocorticoid-sparing treatments are needed. Nevertheless, development of treatment regimens in PMR has been hampered by the lack of reliable classification criteria and evidence-based outcome measures. In this editorial, we discuss the need for valid classification criteria in PMR, the strengths and limitations of the ACR/EULAR 2012 provisional classification criteria for PMR and the need of validation and possible refining of the criteria.

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“I suddenly felt I’d aged”: A qualitative study of patient experiences of polymyalgia rheumatica (PMR)

Cited by 32 publications

References 21 publications

Development and testing of candidate items for inclusion in a new rheumatoid arthritis stiffness patient-reported outcome measure

Development and testing of candidate items for inclusion in a new rheumatoid arthritis stiffness patient-reported outcome measure

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

Perspectives and unmet needs in polymyalgia rheumatica. Providing the fundamental framework for the development of new treatment regimes in polymyalgia rheumatica

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