To explore patient experiences of living with, and receiving treatment for, PMR.
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.
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.
Recognising this is key to achieving shared understanding, reaching the correct diagnosis promptly, and formulating a patient-centred management plan.
Patients often described their experience of PMR in terms of disability rather than focussing on localised symptoms. The associated psychological impact was significant.