Division of Pulmonary Medicine, 3158University of Alberta, Edmonton, AB, Canada.
Provincial Research Data Services, 3146Alberta Health Services, Edmonton, AB, Canada.
Am J Hosp Palliat Care. 2023 Feb;40(2):153-163. doi: 10.1177/10499091221096416. Epub 2022 Apr 28.
Fibrotic interstitial lung diseases (F-ILDs) have a high symptom burden with progressive dyspnea as a primary feature. Breathlessness is underrecognized and undertreated primarily due to lack of consensus on how to best measure and manage it. Several nonpharmacologic and pharmacologic strategies are published in the literature, however there is a paucity of real-world data describing their systematic implementation. We describe the types of breathlessness interventions and timing of implementation in our multidisciplinary collaborative care (MDC) ILD clinic and the impact of our approach on dyspnea trajectory and acute care use in ILD. A retrospective, observational study of deceased ILD patients seen in our clinic (2012-2018) was conducted. Patients were grouped by baseline medical research council (MRC) grade and dyspnea interventions from clinic enrolment until death were examined. Healthcare usage in the last 6 months of life was collected through Alberta's administrative database. Eighty-one deceased ILD patients were identified. Self management advice was provided to 100% of patients. Pulmonary rehabilitation (PR) and home care (HC) referrals were made in 40% and 57% of patients, respectively. Eighty percent were treated with oxygen and 53% with opioids during the study. MDC-initiated referral to PR and HC, oxygen and opioid prescriptions were provided a median of 13, 9, 11, and 4 months prior to death, respectively. Stepwise implementation of interventions was observed more commonly in MRC 1-2 and concurrent implementation in MRC 4-5. Our clinic's approach allows early and systematic dyspnea management.
纤维化间质性肺疾病(F-ILDs)具有较高的症状负担,以进行性呼吸困难为主要特征。呼吸困难未得到充分认识和治疗,主要是因为缺乏最佳测量和管理方法的共识。文献中已经发表了几种非药物和药物治疗策略,但缺乏描述其系统实施的真实世界数据。我们描述了在我们的多学科协作(MDC)ILD 诊所中呼吸困难干预的类型和实施时机,以及我们的方法对ILD 患者呼吸困难轨迹和急性护理使用的影响。对我们诊所(2012-2018 年)就诊的已故ILD 患者进行了回顾性观察性研究。根据基线医疗研究委员会(MRC)评分和从就诊开始到死亡的呼吸困难干预将患者分组进行检查。通过艾伯塔省的行政数据库收集了生命最后 6 个月的医疗保健使用情况。确定了 81 名已故ILD 患者。为 100%的患者提供了自我管理建议。分别有 40%和 57%的患者接受了肺康复(PR)和家庭护理(HC)转诊。80%的患者在研究期间接受了氧气治疗,53%的患者接受了阿片类药物治疗。MDC 发起的 PR 和 HC、氧气和阿片类药物处方的中位时间分别为死亡前 13、9、11 和 4 个月。在 MRC 1-2 中更常见逐步实施干预措施,而在 MRC 4-5 中则同时实施。我们诊所的方法允许早期和系统的呼吸困难管理。