Understanding the psychosocial determinants of effective disease management in rheumatoid arthritis to prevent persistently active disease: a qualitative study

IF 5.1 2区 医学 Q1 RHEUMATOLOGY
Nkasi Stoll, Mrinalini Dey, Sam Norton, Maryam Adas, Ailsa Bosworth, Maya H Buch, Andrew Cope, Heidi Lempp, James Galloway, Elena Nikiphorou
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Abstract

Background According to epidemiological studies, psychosocial factors are known to be associated with disease activity, physical activity, pain, functioning, treatment help-seeking, treatment waiting times and mortality in people with rheumatoid arthritis (RA). Limited qualitative inquiry into the psychosocial factors that add to RA disease burden and potential synergistic interactions with biological parameters makes it difficult to understand patients’ perspectives from the existing literature. Aim This study aimed to gather in-depth patient perspectives on psychosocial determinants that drive persistently active disease in RA, to help guide optimal patient care. Methods Patient research partners collaborated on the research design and materials. Semistructured interviews and focus groups were conducted online (in 2021) with patients purposively sampled from diverse ethnicities, primary languages, employment status and occupations. Data were analysed using inductive thematic analysis. Results 45 patients participated across 28 semistructured interviews and three focus groups. Six main themes on psychosocial determinants that may impact RA management were identified: (1) healthcare systems experiences, (2) patient education and health literacy, (3) employment and working conditions, (4) social and familial support, (5) socioeconomic (dis)advantages, and (6) life experiences and well-being practices. Conclusion This study emphasises the importance of clinicians working closely with patients and taking a holistic approach to care that incorporates psychosocial factors into assessments, treatment plans and resources. There is an unmet need to understand the relationships between interconnected biopsychosocial factors, and how these may impact on RA management. All data relevant to the study are included in the article or uploaded as supplemental information.
了解类风湿关节炎患者进行有效疾病管理以防止疾病持续活动的社会心理决定因素:一项定性研究
背景 根据流行病学研究,社会心理因素与类风湿关节炎(RA)患者的疾病活动、体力活动、疼痛、功能、寻求治疗帮助、治疗等待时间和死亡率有关。由于对加重类风湿关节炎疾病负担的社会心理因素以及与生物参数之间潜在的协同作用的定性研究有限,因此很难从现有文献中了解患者的观点。目的 本研究旨在收集患者对导致RA疾病持续活跃的社会心理决定因素的深入看法,以帮助指导最佳的患者护理。方法 患者研究伙伴合作设计研究方案和材料。有目的性地从不同种族、主要语言、就业状况和职业的患者中抽取样本,在线(2021 年)进行了半结构式访谈和焦点小组讨论。数据采用归纳式主题分析法进行分析。结果 45 名患者参加了 28 个半结构式访谈和 3 个焦点小组。确定了可能影响 RA 管理的六大社会心理决定因素主题:(1)医疗保健系统经验,(2)患者教育和健康知识,(3)就业和工作条件,(4)社会和家庭支持,(5)社会经济(不)优势,以及(6)生活经验和幸福实践。结论 本研究强调了临床医生与患者密切合作,采取整体护理方法,将社会心理因素纳入评估、治疗计划和资源的重要性。了解相互关联的生物-心理-社会因素之间的关系,以及这些因素如何影响 RA 的管理,是一项尚未得到满足的需求。与该研究相关的所有数据均包含在文章中或作为补充信息上传。
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来源期刊
RMD Open
RMD Open RHEUMATOLOGY-
CiteScore
7.30
自引率
6.50%
发文量
205
审稿时长
14 weeks
期刊介绍: RMD Open publishes high quality peer-reviewed original research covering the full spectrum of musculoskeletal disorders, rheumatism and connective tissue diseases, including osteoporosis, spine and rehabilitation. Clinical and epidemiological research, basic and translational medicine, interesting clinical cases, and smaller studies that add to the literature are all considered.
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