Abstract
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.
Highlights
The 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
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]
The QQ-10 is a measure developed to collect standardised information on important aspects of a questionnaire’s qualities from the patient’s perspective and is used to assess the face validity, feasibility and utility of patient healthcare questionnaires. This part of the iterative PROM development process is important to ensure that the instrument is acceptable and contains the content that is relevant to patients with PMR, and completion burden of the final questionnaire is minimised improving follow-up and questionnaire completion rates in clinical trials [9]
Summary
The 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. The QQ-10 is a measure developed to collect standardised information on important aspects of a questionnaire’s qualities from the patient’s perspective and is used to assess the face validity, feasibility and utility of patient healthcare questionnaires This part of the iterative PROM development process is important to ensure that the instrument is acceptable and contains the content that is relevant to patients with PMR, and completion burden of the final questionnaire is minimised improving follow-up and questionnaire completion rates in clinical trials [9]. These data are vital for development of a PROM that is valid for either research studies or clinical practice
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