“It struck me that they didn't understand pain”: The specialist pain clinic experience of patients with chronic musculoskeletal pain

Abstract

To explore the experiences of diagnosis and management among patients who attended a specialist musculoskeletal pain clinic and the factors influencing their interpretation of these experiences. A postal questionnaire was sent to potential participants 6-20 months after their first clinic attendance. Data were collected on pain presence, severity, and location; health-related quality of life; psychological distress; and care-seeking behavior. Questionnaire data were used to inform combined purposive and theoretical sampling. In-depth interviews were conducted that probed participants' understanding of their chronic musculoskeletal pain and its management in a specialist musculoskeletal pain clinic. Fifteen patients were interviewed. Four main themes were identified: spoiled identity (pain limited patients' activities so extensively that it affected their sense of self); diminishing faith in medicine (patients were disappointed with aspects of their care-seeking experience); making sense of pain (patients made sense of their pain by locating their pain within the context of their lives); and learning to live with the pain (an issue for all patients was whether or not their pain would stop or whether they had to learn to live with it). Developing, implementing, and evaluating approaches to address patients' spoiled identities might allow us to improve patient-centered outcomes in chronic musculoskeletal pain.