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治疗与自我管理方法的使用:溃疡性结肠炎患者的观点与决策

Use of Treatment and Self-Management Methods: Perspectives and Decisions of Patients With Ulcerative Colitis.

作者信息

DuBois Kelli E, Blake Christine E, Rudisill Caroline, Harrison Sayward E, Hébert James R

机构信息

Prevention Research Center, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA (KED).

Department of Health Promotion, Education, and Behavior, Arnold School of Public Health, University of South Carolina, Columbia, SC, USA (KED, CEB, CR).

出版信息

Am J Lifestyle Med. 2024 Apr 2:15598276241243300. doi: 10.1177/15598276241243300.

Abstract

Patients with Ulcerative Colitis (UC) seek a variety of methods to manage the physical and psychosocial burdens of illness on daily life. This study examines how individuals with UC: (1) utilize treatment and self-management methods and (2) make decisions regarding their use of these methods throughout the disease course. Adults living with UC ≥5 years and experienced ≥1 disease flare, participated in individual, semi-structured qualitative interviews. Transcripts were thematically analyzed using a constant comparative approach in NVivo12. Participants (N = 21) described their decisions to utilize medical, lifestyle, and complementary methods, which were shaped by sources of information, attitudes toward self-management, and personal motivations. The poor quality of life associated with the daily burden of living with UC emerged as a primary motive for exploration and utilization of treatment and management methods. Participants reported primarily utilizing treatment and management methods as reactive responses to flares instead of preventive measures. Results provide insight into patient decision-making and may inform individualized patient care, improve patient-provider communication, and guide interdisciplinary efforts to support self-management among patients with UC. Findings highlight a need for greater focus on promoting preventive self-management lifestyle behaviors to protect against disease activity and progressive impairment.

摘要

溃疡性结肠炎(UC)患者寻求各种方法来应对疾病给日常生活带来的身体和心理负担。本研究探讨了UC患者:(1)如何利用治疗和自我管理方法,以及(2)在整个病程中如何就这些方法的使用做出决策。患有UC≥5年且经历过≥1次疾病发作的成年人参与了个人半结构化定性访谈。使用NVivo12中的持续比较方法对访谈记录进行了主题分析。参与者(N = 21)描述了他们使用医疗、生活方式和补充方法的决策,这些决策受到信息来源、对自我管理的态度和个人动机的影响。与UC日常生活负担相关的生活质量差成为探索和使用治疗及管理方法的主要动机。参与者报告主要将治疗和管理方法作为对发作的反应,而非预防措施。研究结果为患者决策提供了见解,可能为个性化患者护理提供参考,改善医患沟通,并指导跨学科努力以支持UC患者的自我管理。研究结果强调需要更加注重促进预防性自我管理生活方式行为,以预防疾病活动和渐进性损害。

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