Symptom Burden and Unmet Existential Needs in Adults With Cystic Fibrosis
Symptom Burden and Unmet Existential Needs in Adults With Cystic Fibrosis
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DOI：
10.1177/0193945919852585
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发表时间：
2019-10-01
影响因子：
1.8
通讯作者：
Kavalieratos, Dio
中科院分区：
文献类型：
--
作者：
Trandel, Elizabeth T.;Pilewski, Joseph M.;Kavalieratos, Dio
虽然囊性纤维化（CF）患者经历了许多症状和生活质量受损，但对生存窘迫知之甚少。这个多变量逻辑回归分析评估了164名成年CF患者的症状负担和五种存在需要之间的关系。11%的参与者报告没有症状负担，61%轻度负担，28%中度/重度负担。最普遍的生存需求是对CF恶化的恐惧（50%）和对未来的不确定性（39%）。中度/重度症状负担的参与者比没有或轻度负担的参与者更有可能报告需要所有五种需求的支持。对于每增加6个百分点的负担，有一个增加的几率报告需要支持学习控制的感觉，对死亡和垂死的感觉，对CF恶化的恐惧，对未来的不确定性，以及对他人的担忧。应根据这些普遍存在的未满足的生存需求，开发和提供CF特定的姑息治疗支持。
Although patients with cystic fibrosis (CF) experience many symptoms and impaired quality of life, little is known about existential distress. This multivariable logistic regression evaluated the relationship between symptom burden and five existential needs representing existential distress in 164 adults with CF. Eleven percent of participants reported no symptom burden, 61% mild burden, and 28% moderate/severe burden. The most prevalent existential needs were fears about CF worsening (50%) and uncertainty about the future (39%). Participants with moderate/severe symptom burden were likelier to report needing support with all five needs than participants with no or mild burden. For each six-point increase in burden, there was an increased odds of reporting need for support with learning to feel in control, feelings about death and dying, fears about CF worsening, uncertainty about the future, and concerns about worries of others. CF-specific palliative care support based on these prevalent unmet existential needs should be developed and provided.