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Objectives PMR causes pain, stiffness and disability in older adults. Measuring the impact of the condition from the patient's perspective is vital to high-quality research and patient-centred care, yet there are no validated patient-reported outcome measures (PROMs) for PMR. We set out to develop and psychometrically evaluate a PMR-specific PROM. Methods Two cross-sectional postal surveys of people with a confirmed diagnosis of PMR were used to provide data for field testing and psychometric evaluation. A total of 256 participants completed the draft PROM. Distribution of item responses was examined, and exploratory factor analysis and Rasch analysis were used to inform item reduction, formation of dimension structure and scoring system development. Some 179 participants completed the PROM at two time points, along with comparator questionnaires and anchor questions. Test–retest reliability, construct validity and responsiveness were evaluated. Results Results from the field-testing study led to the formation of the PMR-Impact Scale (PMR-IS), comprising four domains (symptoms, function, psychological and emotional well-being, and steroid side effects). Construct validity and test–retest reliability met accepted quality criteria for each domain. There was insufficient evidence from this study to determine its ability to detect flares/deterioration, but the PMR-IS was responsive to improvements in the condition. Conclusion The PMR-IS offers researchers a new way to assess patient-reported outcomes in clinical studies of PMR. It has been developed robustly, with patient input at every stage. It has good construct validity and test–retest reliability. Further work is needed to fully establish its responsiveness and interpretability parameters, and to assess its real-world clinical utility. [ABSTRACT FROM AUTHOR]

Objectives To explore patient experiences of living with, and receiving treatment for, PMR. Methods Semi-structured qualitative interviews, with 22 patients with PMR recruited from general practices in South Yorkshire. Thematic analysis using a constant comparative method, ran concurrently with the interviews and was used to derive a conceptual framework. Results 5 Key themes emerged highlighting the importance of: (1) pain, stiffness and weakness, (2) disability, (3) treatment and disease course, (4) experience of care, (5) psychological impact of PMR. Patients emphasised the profound disability experienced that was often associated with fear and vulnerability, highlighting how this was often not recognised by health care professionals. Patients’ experiences also challenge medical convention, particularly around the concept of ‘weakness’ as a symptom, the use of morning stiffness as a measure of disease activity and the myth of full resolution of symptoms with steroid treatment. Treatment decisions were complex, with patients balancing glucocorticoid side effects against persistent symptoms. Conclusions Patients often described their experience of PMR in terms of disability rather than focussing on localised symptoms. The associated psychological impact was significant. Practice implications Recognising this is key to achieving shared understanding, reaching the correct diagnosis promptly, and formulating a patient-centred management plan. [ABSTRACT FROM AUTHOR]