Evaluation of Pain, Dyspnea, and Goals of Care Among Adults With Cystic Fibrosis: A Comprehensive Palliative Care Survey
Evaluation of Pain, Dyspnea, and Goals of Care Among Adults With Cystic Fibrosis: A Comprehensive Palliative Care Survey
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DOI：
10.1177/1049909116629135
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发表时间：
2017-05-01
影响因子：
1.9
通讯作者：
Balk, Robert A.
中科院分区：
文献类型：
--
作者：
Chen, Elaine;Killeen, Kathryn M.;Balk, Robert A.
背景：姑息治疗在囊性纤维化（CF）成人的护理中变得越来越重要。疼痛和呼吸困难等症状很常见，但严重程度可能被低估。描述患者对临终关怀 (EOLC) 偏好的信息很少。本研究的目的是描述患者对疼痛、呼吸困难和预先护理计划的看法。方法：我们开展了一项调查来评估成人 CF 患者的疼痛、呼吸困难和 EOLC。问题是根据现有工具编写和改编的。该调查针对单个成人 CF 护理中心的所有患者进行。描述性数据被编译为计数（比例）和中位数（第 25 个和第 75 个百分位）。曼惠特尼 U 检验用于确定经历疼痛和呼吸困难的个体之间的差异。使用 0.05 的 P 值来确定显着性。结果：返回 43 项调查中的 37 项。百分之二十四的人报告有慢性疼痛。与无疼痛的患者相比，气道清除时报告疼痛的患者的肺功能（预测用力呼气量 1 [FEV1] 42% vs 65%，P < .05）和体重指数（19.6 vs 22.3，P < .05）较低。那些报告休息时呼吸困难的患者的 FEV1 中位数较低（28% vs 61%，P < .05）。肺功能较低的患者更有可能考虑临终决定（73% vs 31%，P < .05）。结论：疼痛和呼吸困难在成人 CF 患者中很常见。很少有人制定了预先指示，但大多数人愿意讨论 EOLC 问题。这项单中心研究的结果可能无法代表整个人群，因此应进行多中心调查。
Background: Palliative care is increasingly important in the care of adults with cystic fibrosis (CF). Symptoms such as pain and dyspnea are prevalent, yet severity may be underestimated. Little information is available to describe patient preferences for end-of-life care (EOLC). The objective of this study was to describe patient perceptions about pain, dyspnea, and advance care planning.Methods: We developed a survey to assess pain, dyspnea, and EOLC in adults with CF. Questions were compiled and adapted from existing tools. The survey was administered to all patients in a single adult CF care center. Descriptive data were compiled as counts (proportions) and median (25th and 75th percentile). Mann Whitney U test was used to determine differences between individuals who experienced pain and dyspnea. A P value of .05 was utilized to determine significance.Results: Thirty-seven of 43 surveys were returned. Twenty-four percent reported chronic pain. Patients who reported pain with airway clearance had lower lung function (predicted forced expiratory volume in 1 [FEV1] 42% vs 65%, P < .05) and body mass index (19.6 vs 22.3, P < .05) than patients without pain. Those reporting dyspnea at rest had lower median FEV1 (28% vs 61%, P < .05). Patients with lower lung function are more likely to have considered end-of-life decisions (73% vs 31%, P < .05).Conclusion: Pain and dyspnea are common among adults with CF. Few had an advance directive in place, but most are open to discussing EOLC issues. Results of this single-center study may not represent the entire population, thus a multicenter investigation should be pursued.