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-type...
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Format: | Article |
Language: | English |
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SpringerOpen
2021-02-01
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Series: | Journal of Patient-Reported Outcomes |
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Online Access: | https://doi.org/10.1186/s41687-021-00286-1 |
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author | Charlotte Panter Pamela Berry Deven Chauhan Sofia Fernandes Sally Gatsi Josephine Park Jane R. Wells Rob Arbuckle |
author_facet | Charlotte Panter Pamela Berry Deven Chauhan Sofia Fernandes Sally Gatsi Josephine Park Jane R. Wells Rob Arbuckle |
author_sort | Charlotte Panter |
collection | DOAJ |
description | 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. |
first_indexed | 2024-12-20T01:19:45Z |
format | Article |
id | doaj.art-4ea8ab4da96a494fafd0d9697a1ef74a |
institution | Directory Open Access Journal |
issn | 2509-8020 |
language | English |
last_indexed | 2024-12-20T01:19:45Z |
publishDate | 2021-02-01 |
publisher | SpringerOpen |
record_format | Article |
series | Journal of Patient-Reported Outcomes |
spelling | doaj.art-4ea8ab4da96a494fafd0d9697a1ef74a2022-12-21T19:58:28ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202021-02-015111710.1186/s41687-021-00286-1A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritisCharlotte Panter0Pamela Berry1Deven Chauhan2Sofia Fernandes3Sally Gatsi4Josephine Park5Jane R. Wells6Rob Arbuckle7Adelphi Values, Patient-Centered OutcomesGSKValue Evidence and OutcomesGSK, StevenageGSKGSKAdelphi Values, Patient-Centered OutcomesAdelphi Values, Patient-Centered OutcomesAbstract 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.https://doi.org/10.1186/s41687-021-00286-1Hand osteoarthritisMichigan Hand Outcomes QuestionnaireConcept elicitationQualitative interviewsReal-time data capturePatient-experience |
spellingShingle | Charlotte Panter Pamela Berry Deven Chauhan Sofia Fernandes Sally Gatsi Josephine Park Jane R. Wells Rob Arbuckle A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis Journal of Patient-Reported Outcomes Hand osteoarthritis Michigan Hand Outcomes Questionnaire Concept elicitation Qualitative interviews Real-time data capture Patient-experience |
title | A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis |
title_full | A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis |
title_fullStr | A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis |
title_full_unstemmed | A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis |
title_short | A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis |
title_sort | qualitative exploration of the patient experience of erosive and non erosive hand osteoarthritis |
topic | Hand osteoarthritis Michigan Hand Outcomes Questionnaire Concept elicitation Qualitative interviews Real-time data capture Patient-experience |
url | https://doi.org/10.1186/s41687-021-00286-1 |
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