1 Department of Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania.
2 Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease at the University of Pittsburgh Medical Center, University of Pittsburgh, Pittsburgh, Pennsylvania.
J Palliat Med. 2019 May;22(5):538-544. doi: 10.1089/jpm.2018.0400. Epub 2019 Jan 7.
Idiopathic pulmonary fibrosis (IPF) is a progressive and fatal lung disease with an unpredictable course and a median survival of three to four years. This timeline challenges providers to approach diagnosis, oxygen therapy, rehabilitation, transplantation, and end-of-life discussions in limited encounters. There is currently no widely accepted guideline for determining when IPF patients should be referred to palliative care (PC). We sought to describe the patient and clinical factors associated with PC referral, as well as its impact on mortality and location of death. We also aimed to examine temporal trends in PC referral in this population. Patient data were retrospectively extracted from the health system repository of our specialty referral center for all new IPF patients evaluated between 2000 and 2016 ( = 828). Exclusion criteria included transplant recipients and patients who did not have IPF. One hundred twelve (13.5%) IPF patients received formal PC referral. Recipients were older at diagnosis (72 years vs. 69 years, < 0.001), had higher frequency of Charlson Comorbidity Index ≥1 (55% vs. 42%, = 0.011), resided closer to our institution (16 miles vs. 54 miles, < 0.001), and had a higher number of total outpatient visits (7 vs. 4, < 0.001). PC was associated with less in-hospital death (44% vs. 60%, = 0.006) and more in-home and hospice death (56% vs. 40%, = 0.006). IPF patients referred to PC were older with more severe comorbidities, resided closer to our specialty referral center, and had more outpatient follow-up. This was associated with more in-home and hospice deaths. The patient-provider relationship and frequency of follow-up visits likely play important roles in the introduction of end-of-life discussions.
特发性肺纤维化（IPF）是一种进行性和致命性肺部疾病，具有不可预测的病程和中位生存期为三至四年。这段时间的限制使得医疗服务提供者在有限的时间内处理诊断、氧气治疗、康复、移植和临终讨论。目前还没有广泛接受的指南来确定何时应将 IPF 患者转介至姑息治疗（PC）。我们旨在描述与 PC 转介相关的患者和临床因素，以及其对死亡率和死亡地点的影响。我们还旨在研究该人群中 PC 转介的时间趋势。患者数据是从我们的专业转诊中心的医疗系统资料库中回顾性提取的，这些数据来自于 2000 年至 2016 年期间评估的所有新的 IPF 患者（n=828）。排除标准包括接受移植的患者和没有 IPF 的患者。112 例（13.5%）IPF 患者接受了正式的 PC 转介。接受者的诊断年龄较大（72 岁比 69 岁， < 0.001），Charlson 合并症指数≥1 的频率更高（55%比 42%， = 0.011），居住在离我们机构更近的地方（16 英里比 54 英里， < 0.001），并且门诊就诊次数更多（7 次比 4 次， < 0.001）。PC 与院内死亡减少相关（44%比 60%， = 0.006），而在家中死亡和在临终关怀机构死亡更多（56%比 40%， = 0.006）。转介至 PC 的 IPF 患者年龄较大，合并症更严重，居住在离我们的专业转诊中心更近的地方，并且有更多的门诊随访。这与更多的在家中死亡和在临终关怀机构死亡相关。患者与提供者的关系以及随访频率可能在引入临终讨论中发挥重要作用。
