Assessing Patient Values and Preferences to Inform the 2023 American College of Rheumatology/American College of Chest Physicians Interstitial Lung Disease Guidelines

IF 3.7 2区 医学 Q1 RHEUMATOLOGY Arthritis Care & Research Pub Date : 2024-07-08 DOI:10.1002/acr.25346
Reza D. Mirza, Marcy B. Bolster, Sindhu R. Johnson, Aberdeen Allen Jr, Elana J. Bernstein, Jonathan H. Chung, Sonye K. Danoff, Catherine Falardeau, Gordon Guyatt, Ilya Ivlev, Dinesh Khanna, Kiana T. Nesbitt, Amy Turner, Stacey Uhl, Michael D. George
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Abstract

Objective

Patient engagement is critical to clinical practice guideline (CPG) development. This work presents our approach to ascertaining patients’ values and preferences to inform the American College of Rheumatology guidelines for screening, monitoring, and treatment of interstitial lung disease (ILD) in people with systemic autoimmune rheumatic diseases (SARDs).

Methods

We conducted a cross-sectional qualitative study of a purposefully sampled Patient Panel using a modified content analytic approach. The study team reviewed text transcripts from the Patient Panel discussion to identify themes and develop a clustered thematic schema.

Results

Twenty-one patients (75% women) participated, with a mean age of 53 years (range 33–73). Patients had one or more SARDs: systemic sclerosis (38%), Sjögren disease (38%), idiopathic inflammatory myopathy (33%), rheumatoid arthritis (24%), and mixed connective tissue disease (10%). We identified 10 themes in 4 thematic clusters: communication, screening and monitoring, treatment goals, and treatment adverse effects. Patients prioritized recognizing ILD symptoms, importance of ILD screening and close monitoring, goals of survival and improving quality of life, and willingness to accept treatment risks provided that there is close communication with providers. Patient representatives shared patients’ priorities and insight at the Voting Panel meeting, influencing multiple guideline recommendations.

Conclusion

Patient engagement fosters a holistic approach to CPG development, leading to recommendations aiming for the best clinical outcomes while prioritizing outcomes important for patients. The patient-identified themes played a critical role in ILD guideline development and provide core elements for shared decision-making as clinicians make management and therapeutic decisions with patients with SARD-associated ILD.

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评估患者的价值观和偏好,为 2023 年美国风湿病学会/美国胸科医师学会间质性肺病指南提供依据。
目的:患者的参与对于临床实践指南(CPG)的制定至关重要。本研究介绍了我们确定患者价值观和偏好的方法,以便为美国风湿病学会关于系统性自身免疫性风湿病(SARDs)患者间质性肺病(ILD)的筛查、监测和治疗指南提供信息:我们采用改良的内容分析法对有目的抽样的患者小组进行了横断面定性研究。研究小组审阅了患者小组讨论的文字记录,以确定主题并建立聚类主题模式:21 名患者(75% 为女性)参与了研究,平均年龄为 53 岁(33-73 岁不等)。患者患有一种或多种 SARDs:系统性硬化症(38%)、斯约格伦病(38%)、特发性炎症性肌病(33%)、类风湿性关节炎(24%)和混合性结缔组织病(10%)。我们确定了 4 个主题群中的 10 个主题:沟通、筛查和监测、治疗目标和治疗不良反应。患者优先考虑识别 ILD 症状、ILD 筛查和密切监测的重要性、生存和提高生活质量的目标以及接受治疗风险的意愿,前提是与医疗服务提供者保持密切沟通。患者代表在投票小组会议上分享了患者的优先事项和见解,对多项指南建议产生了影响:结论:患者的参与促进了制定 CPG 的整体方法,从而提出了旨在获得最佳临床效果的建议,同时优先考虑对患者重要的效果。患者确定的主题在 ILD 指南的制定过程中发挥了关键作用,并为临床医生对 SARD 相关 ILD 患者做出管理和治疗决策时的共同决策提供了核心要素。
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来源期刊
CiteScore
9.40
自引率
6.40%
发文量
368
审稿时长
3-6 weeks
期刊介绍: Arthritis Care & Research, an official journal of the American College of Rheumatology and the Association of Rheumatology Health Professionals (a division of the College), is a peer-reviewed publication that publishes original research, review articles, and editorials that promote excellence in the clinical practice of rheumatology. Relevant to the care of individuals with rheumatic diseases, major topics are evidence-based practice studies, clinical problems, practice guidelines, educational, social, and public health issues, health economics, health care policy, and future trends in rheumatology practice.
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