Kalluri Meena, Younus Sarah, Archibald Nathan, Richman-Eisenstat Janice, Pooler Charlotte
Division of Pulmonary Medicine, Department of Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada
Multidisciplinary Collaborative ILD Clinic, Kaye Edmonton Clinic, Alberta Health Services, Edmonton, Alberta, Canada.
BMJ Support Palliat Care. 2021 Apr 8. doi: 10.1136/bmjspcare-2020-002831.
Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support.
To explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic.
A qualitative study was conducted with participants recruited from the MDC-ILD Clinic. Participants received an early integrated palliative approach; most attended ILD pulmonary rehabilitation and some received home care support. Semistructured interviews were conducted. Patient participants completed Measure Yourself Medical Outcome Profile (MYMOP) for symptom assessment and Chronic Obstructive Pulmonary Disease Self-Efficacy Scale to assess self-management efficacy.
Thirteen patients and eight self-declared caregiver participants were interviewed. IPF severity ranged from mild to advanced disease. Participants integrated and personalised self-management strategies. They were intentional and confident, focused on living well and engaged in anticipatory planning. Twelve participants completed the MYMOP. Five reported dyspnoea. Four reported fatigue as an additional or only symptom. One reported cough. Five declared no dyspnoea, cough or fatigue. Participants reported 80% self-efficacy in symptom management.
The approach to symptom self-management and education was beneficial to patients with IPF and caregiver participants. Participants personalised the strategies, focusing on living, and planned both in the moment and for the future. They were confident and expressed dignity and meaning in their lives.
特发性肺纤维化（IPF）是一种进行性、无法治愈的纤维化肺病，患者和照护者报告称其症状负担很重。症状往往管理不善，在缺乏自我管理支持的情况下，患者和照护者难以缓解痛苦。
探讨接受多学科协作间质性肺病（MDC-ILD）诊所制定并提供的自我管理教育和行动计划的IPF患者及其照护者对症状的认知、症状管理策略和自我效能感。
对从MDC-ILD诊所招募的参与者进行了一项定性研究。参与者接受了早期综合姑息治疗方法；大多数人参加了ILD肺康复，一些人接受了家庭护理支持。进行了半结构式访谈。患者参与者完成了自我测量医学结果概况（MYMOP）以进行症状评估，并完成了慢性阻塞性肺疾病自我效能量表以评估自我管理效能。
采访了13名患者和8名自称的照护者参与者。IPF严重程度从轻度到重度不等。参与者整合并个性化了自我管理策略。他们有意识且自信，专注于过上美好生活并进行前瞻性规划。12名参与者完成了MYMOP。5人报告有呼吸困难。4人报告疲劳是另外的症状或唯一症状。1人报告有咳嗽。5人宣称没有呼吸困难、咳嗽或疲劳。参与者报告在症状管理方面有80%的自我效能感。
症状自我管理和教育方法对IPF患者及其照护者参与者有益。参与者将策略个性化，专注于生活，并为当下和未来制定计划。他们充满信心，在生活中展现出尊严和意义。
