A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis

Abstract

Background Many patients with hand osteoarthritis (HOA) experience reduced health-related quality of life. This study sought to better understand the disease and treatment experience of individuals with HOA, explore any differences in experiences between erosive and non-erosive HOA sub-types, and evaluate content validity of the Michigan Hand Outcomes Questionnaire (MHQ) in HOA. Methods Thirty subjects from the United States (n = 15 erosive HOA; n = 15 non-erosive HOA) participated in semi-structured interviews: concept elicitation explored symptoms/impacts important to patients; cognitive interviews assessed understanding and relevance of the MHQ. A sub-sample participated in real-time data capture (RTDC) activities via a smartphone/tablet app over 7 days. Verbatim transcripts were coded using Atlas.ti software and thematically analyzed. Concept saturation and MHQ content validity were evaluated. Results Most participants reported experiencing pain, swelling and stiffness, symptoms that most commonly had a direct impact on physical functioning. Substantial impacts on activities of daily living, emotional functioning, sleep and work were also reported. RTDC findings corroborated concept elicitation findings. There were no notable differences between erosive and non-erosive HOA, except nodules were reported more frequently in erosive disease. Most participants used analgesic treatments, but effects were short-lived. Pain was the symptom most frequently reported as most bothersome and important to treat. Concept saturation was achieved. MHQ items and instructions were well understood and relevant to most participants; stiffness and swelling were reported as important symptoms not included in the MHQ. Conclusions This study characterizes key symptoms of HOA which are burdensome for patients and not well controlled by current therapies, highlighting an unmet treatment need. Although the study is limited by a small sample size that may not be representative of the broader erosive and non-erosive HOA population, concept saturation was achieved, and our findings suggest that disease experience is similar for patients with erosive and non-erosive HOA. Evaluation of stiffness and swelling items in conjunction with the MHQ may enhance relevance and improve measurement precision to assess important domains of HQRoL in an HOA population.

Experiences of people with hand osteoarthritis and perceptions of clinicians and carers on quality of life and treatment services: A qualitative synthesis

“…After reviewing 37 full-text citations, we identified 10 published reports from seven studies in people with HOA [18][19][20][21][22][23][24][25][26][27] and three studies in clinicians. [34][35][36] We didn't find any qualitative studies that explored carers' perceptions of HOA.…”

“…Four studies used ACR criteria for diagnosing HOA. [23][24][25][26][27] Others were based on the clinicians' diagnosis or asking specific questions about hand pain. [18][19][20][21][22] Data collection was through face-to-face semistructured interviews and focus groups.…”

“…One study added diary entries and field notes, 18 another used participant-generated photographs of daily activities to guide the interviews 19 and another conducted interviews via telephone. 27 Interviews were audio recorded and transcribed verbatim in six out of seven studies. [18][19][20][21]23,24,26,27 Focus group interviews 21 were both audio and video recorded in another report.…”

“…16,17 Many qualitative studies have explored the experiences of people living with HOA. [18][19][20][21][22][23][24][25][26][27] For an even better understanding of HOA, it is important to know the perspectives of clinicians, family members or carers of people with HOA. Carers are from the patients' immediate social environment (spouse or a family member) who could provide insight into patients' experiences of living with HOA and how they cope and self-manage.…”

Qualitative evidence synthesis using meta-ethnography to understand the experience of living with osteoarthritis pain

“…We excluded 8 full texts on the basis of relevance 6,14,29,41,59,107,123,157 and 13 where we were unable to extract a coherent research finding. 17,21,64,67,79,93,114,117,120,137,140,159,164 We included findings from 118 reports (105 unique samples) published between 1998 and 2021. 1–5,7,9–13,15,16,18,20,22–27,31 , 33,34,37,39,40,43-46,48,49 , 52–58,60,61,63,65,66,68–78 , 80-82,86-92,94-101 , 103–105,108–110,112,113,115,118,119 , 121,122,124-130,132-134,141-147 , 149–155,158,160–162,165–169 Table 2 presents the author, year of publication, country, condition, number of participants, and age.…”