抗磷脂抗体患者生活经历的定性调查。

IF 1.9 4区 医学 Q3 RHEUMATOLOGY
Lupus Pub Date : 2024-09-01 Epub Date: 2024-07-24 DOI:10.1177/09612033241265545
Francesca S Cardwell, Alexandra O Kobza, Susan J Elliott, Paul S Gibson, Nancy Soliman, Leslie Skeith, Ann E Clarke, Megan Rw Barber
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引用次数: 0

摘要

目的:抗磷脂抗体(aPL)和抗磷脂综合征(APS)患者的发病率和死亡率都很高,但人们对患者的经历却知之甚少。这项研究调查了抗磷脂抗体/抗磷脂综合征诊断的患者经历、对日常生活的影响以及医疗保健和治疗:我们从加拿大一家多学科 APS 诊所招募了年龄≥18 岁、根据修订版札幌标准患有 APS 或 APL ≥1 次阳性且≥2 次的患者,让他们参加半结构式深度访谈。访谈以虚拟方式进行,并逐字记录,以便随后进行主题分析:21 名 aPLs/APS 患者参加了访谈,其中 95.2% 为女性,平均(标清)年龄为 45.6(15.0)岁。大多数患者(71.4%)患有 APS,71.4%的患者患有伴有系统性红斑狼疮的 aPLs/APS。研究结果围绕患者对 aPL/APS 诊断、对日常生活的影响以及医疗保健和治疗的体验展开。参与者描述了在确诊 aPL/APS 时所经历的医疗并发症/身体症状以及对医疗保健、生活方式和情绪的影响。除了 aPLs/APS 带来的身体和社会心理影响外,患者还报告了休闲活动的改变、就业轨迹的改变以及对人际关系的积极和消极影响。对计划生育的影响也是 aPL/APS 生活经历的一个重要组成部分;参与者分享了流产、其他妊娠并发症和与药物相关的挑战(如注射低分子量肝素)的经历。与会者还讨论了 aPL/APS 医疗保健和治疗所面临的挑战,特别是与生活方式、身体和用药带来的精神负担有关的挑战。虽然与会者描述了资源匮乏的问题,但在做出管理决策或寻求信息时,他们表示信任医疗服务提供者。对资源的建议包括:需要更多与药物治疗相关的信息、帮助了解管理行为背景的例子,以及为患有 aPL/APS 但没有患系统性红斑狼疮的患者提供更多信息:患者强调了 aPLs/APS 的各种表现形式,以及与管理相关的挑战是如何给他们带来巨大的身体和心理负担的。研究结果将为开发符合患者优先考虑事项的患者资源提供参考。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
A qualitative investigation of the experiences of patients living with antiphospholipid antibodies.

Objective: Substantial morbidity and mortality affect those with antiphospholipid antibodies (aPLs) and antiphospholipid syndrome (APS), yet patient experiences remain poorly understood. This research investigated patient experiences of aPL/APS diagnosis; effects on daily life; and healthcare and treatment.

Methods: Patients aged ≥18 years with APS per the Revised Sapporo criteria or with ≥1 positive aPL on ≥2 occasions were recruited from a Canadian multidisciplinary APS clinic to participate in semi-structured in-depth interviews. Interviews were conducted virtually and transcribed verbatim for subsequent thematic analysis.

Results: Twenty-one patients with aPLs/APS participated; 95.2% were female, mean (SD) age was 45.6 (15.0) years. Most (71.4%) had APS, and 71.4% had aPLs/APS with SLE. Results are presented around patient experiences of aPL/APS diagnosis, effects on daily life, and healthcare and treatment. Participants described medical complications/physical symptoms and the healthcare, lifestyle, and emotional impacts experienced around the time of aPLs/APS diagnosis. In addition to the physical and psychosocial impacts of living with aPLs/APS, patients reported modified leisure activities, altered employment trajectories, and positive and negative impacts on relationships. Impacts on family planning were also a critical component of the aPL/APS lived experience; participants shared experiences of miscarriage, other pregnancy complications, and medication-related challenges (e.g., with low-molecular-weight heparin injections). Challenging aspects of aPL/APS healthcare and treatment were also discussed, particularly related to the lifestyle, physical, and emotional burden of medication use. Although a lack of resources was described, participants expressed trust in healthcare providers when making management decisions or when seeking information. Suggestions for resources included the need for additional medication-related information, examples to help contextualize management behaviours, and additional information for those with aPLs/APS without SLE.

Conclusion: Patients highlighted how the diverse manifestations of aPLs/APS, accentuated by management-related challenges, impose considerable physical and psychosocial burdens. Results will inform the development of patient resources aligned with patient priorities.

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来源期刊
Lupus
Lupus 医学-风湿病学
CiteScore
4.20
自引率
11.50%
发文量
225
审稿时长
1 months
期刊介绍: The only fully peer reviewed international journal devoted exclusively to lupus (and related disease) research. Lupus includes the most promising new clinical and laboratory-based studies from leading specialists in all lupus-related disciplines. Invaluable reading, with extended coverage, lupus-related disciplines include: Rheumatology, Dermatology, Immunology, Obstetrics, Psychiatry and Cardiovascular Research…
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