Background/Purpose: Hand OA (HOA) is associated with substantial pain, joint stiffness, functional impairment and disability, and cosmetic concerns. Data regarding patients’ perspective on living with these consequences is limited. We aimed to explore the experiences of HOA patients of different phenotypes and explored their perspectives in the symptom, function and aesthetics domains.  

Methods: Unrelated patients ≥ 45 years of age with clinical and radiographic idiopathic HOA (distal interphalangeal (DIP) and/or carpalmetacarpal (CMC) joints) from our registry were recruited and consented for a 45-minute, face-to-face semi-structured interview by a trained medical anthropologist to assess symptom, function and aesthetics domains. Interviews were audiotaped and interviewer notes and tapes were reviewed using a content analysis approach.

Results:  14 (11 women and 3 men) patients were interviewed. 10 of 14 were ≥ 60 years with a median age of 70 years. 5 had erosive disease, of whom 3 also had CMC involvement, 3 had CMC only disease, 6 had non erosive HOA, of whom 4 had CMC disease as well.

Most participants (13 of 14) had dull, aching pain (median score=6 out of 10 with 0=none and 10=maximum possible) and stiffness. Many described different adaptations to address pain, discussed their fears of future disease progression and their reluctance to medication for HOA, and accepted pain as part of the aging process.  The participants claimed the worst part of having HOA was decreased functionality and potential loss of independence (median score=5). They discussed how HOA limited daily activities, hobbies, and work, leading to frustration. Those with HOA in multiple joint areas reported the most limitations; those with DIP joint involvement reported worse function vs. those with CMC only disease. Whether it was erosive or non-erosive did not make much difference.

Participants rated how much the appearance of their hands affected them (median score=2). Most related HOA to aging  However, of those bothered by their appearance (all female), they reported being very troubled.

Important issues of concern to the patients also emerged and were discussed openly – coping strategies, self-reliance and personal strength, lessons learned, and worry and fears for the future, given this chronic illness. They also commonly articulated their desire to receive more counseling and information, including non-medical healing approaches, from their rheumatologists.

Conclusion: Patients with more joint area involvement suffered the most functional loss. IP involvement led to more severe functional limitations compared to CMC OA but erosive disease did not compound functional disability. Patients experienced frustration over functionality loss and potential loss of future independence since many either experienced or anticipated living alone. Other areas of concern not traditionally assessed or considered by physicians, including coping, lessons learned from the disease, fears for the future, and desire for non-drug approaches were identified. Understanding the impact of HOA on patient perception may identify new opportunities for targeted intervention outside of traditional methods.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-perspective-of-the-main-health-concerns-and-needs-of-living-with-hand-osteoarthritis/