Understanding the pain experience in hip and knee osteoarthritis--an OARSI/OMERACT initiative.

Objective: To examine the pain experience of people with hip or knee osteoarthritis (OA), particularly changes over time and most distressing features.

Method: Focus groups in individuals aged 40+ years with painful hip or knee OA obtained detailed descriptions of OA pain from early to late disease. A modified Patient Generated Index (PGI) was used to assess the features of OA pain that participants found most distressing. Content analysis was performed to examine response patterns; descriptive statistics were used to summarize PGI responses.

Results: Mean age of the 143 participants (52 hip OA; 91 knee OA) was 69.5 years (47-92 years); 60.8% were female and 93.7% Caucasian. Participants described two distinct types of pain - a dull, aching pain, which became more constant over time, punctuated increasingly with short episodes of a more intense, often unpredictable, emotionally draining pain. The latter, but not the former, resulted in significant avoidance of social and recreational activities. From PGI responses, distressing pain features were: the pain itself (particularly intense and unpredictable pain) and the pain's impact on mobility, mood and sleep.

Conclusions: Two distinct pain types were identified. Intermittent intense pain, particularly when unpredictable, had the greatest impact on quality of life.