Experiencing Painful Osteoarthritis: What Have We Learned From Listening?

Gillian A Hawker

Disclosures

Curr Opin Rheumatol. 2009;21(5):507-512. 

In This Article

What have We Learned from Listening?

Focus groups and interviews in people with early to late osteoarthritis have revolutionized our understanding of the osteoarthritis pain experience. To inform choice of measures for a longitudinal cohort study, French et al.[13] conducted focus groups in 42 adults with painful hip/knee osteoarthritis (mean age 74.9 years). The authors reported that participants' pain experience could be characterized across five themes: pain characteristics (intensity, quality, location, frequency, duration and variability of osteoarthritis pain); factors affecting pain (e.g. activities and weather change); modifications made to cope with pain (e.g. use of medications and modifications to the way they carried out activities); pain impact (change in activities, mobility and mood because of osteoarthritis pain); and pain severity perceptions (e.g. social comparisons with others and discussions with family and friends regarding their pain).

Subsequently, two additional qualitative studies confirmed the multidimensionality of the osteoarthritis pain experience. Gooberman-Hill et al.[14] conducted focus groups in 28 participants in the UK Somerset and Avon Survey of Health cohort, aged 57–89 years, whereas investigators from the UK, Australia, the US and Canada conducted focus groups in 91 knee osteoarthritis and 52 hip osteoarthritis participants aged 47–92 years.[15••] Both studies included individuals with varying levels of self-reported hip or knee pain severity with the goal to better understand the osteoarthritis pain experience. The second study additionally focused on understanding how hip/knee symptoms changed over time and, using a standardized questionnaire (a modified version of Ruta's Patient-Generated Index, PGI[16]), assessed the osteoarthritis pain priorities and concerns of participants and the varying weights and values that they attach to the concerns.

Both studies found that people with painful hip/knee osteoarthritis had difficultly separating their pain from functioning. Gooberman-Hill et al.[14] additionally reported that participants' osteoarthritis pain descriptions were highly variable and influenced by pain elsewhere in the body; they used multiple strategies to cope with their pain, including adaptation and avoidance.

Many different terms were used to describe osteoarthritis pain, such as ache, sharp, hurt, sore, burning, and throbbing.[15••] And participants described two distinct kinds of osteoarthritis pain: a dull, aching, throbbing pain that was punctuated with shorter episodes of a more intense or sharp pain. In general, over time, participants more often used terms such as 'sharp' or 'intense' rather than terms such as 'ache' to describe their osteoarthritis pain. On the basis of modified PGI responses, the most distressing features of osteoarthritis pain, excluding the effect on functioning, were the intensity or severity of the pain, the quality or characteristics of the pain (e.g. burning, stabbing, aching) and the impact of the pain on their quality of sleep and mood (frustration because of the inability to do things that were valued and worry for the future), and, when present, the unpredictability of the pain. Specifically, the inability to anticipate pain exacerbations resulted in substantial curtailing of participation in valued activities.

The pain experience was different for hip versus knee osteoarthritis participants.[15••] Unpredictability was almost entirely associated with knee osteoarthritis and often related to the knee giving way or locking. In comparison, hip osteoarthritis pain tended to become more predictable over time. Hip osteoarthritis participants more often used 'intense' descriptors, such as ice pick, pickaxe, spike, or paralyzing, to describe their pain or compared their pain to that associated with other experiences, such as childbirth, broken bones, and surgery, than did knee osteoarthritis participants.

Stamm et al.[17] have similarly shed light on the hand osteoarthritis pain experience. They conducted focus groups in 56 individuals (91% female volunteers) with hand osteoarthritis recruited from five European countries to assess the adequacy of existing hand osteoarthritis measures. Similar to hip/knee osteoarthritis focus group participants, participants with hand osteoarthritis provided detailed descriptions of their pain, including the specific pain sensations (e.g. 'cutting like a knife'), pain intensity (e.g. tenderness versus 'killing pain'), and relation of the pain to activity. Participants described having made substantial modifications to cope with their pain, including wearing gloves, modifying their environment (e.g. one participant described buying lighter weight pots and pans), pacing their activities, and avoidance of painful activities if possible. As for hip and knee osteoarthritis, the hand osteoarthritis pain experience was described as having substantial psychological consequences (e.g. anxiety, fear, frustration, and anger) and negative affects on sleep and fatigue. The authors compared the themes that emerged from their focus groups with the domains of six existing osteoarthritis hand measures; in general, these measures assessed pain in the hand joints and activity-related pain but failed to adequately assess the more qualitative aspects of the hand osteoarthritis pain experience, such as pain qualities and fluctuations in intensity.

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