The CF-CARES primary palliative care model: A CF-specific structured assessment of symptoms, distress, and coping
The CF-CARES primary palliative care model: A CF-specific structured assessment of symptoms, distress, and coping
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DOI：
10.1016/j.jcf.2017.02.011
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发表时间：
2018-01-01
影响因子：
5.2
通讯作者：
Moskowitz, Samuel M.
中科院分区：
文献类型：
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作者：
Friedman, Deborah;Linnemann, Rachel W.;Moskowitz, Samuel M.
背景：当前的姑息治疗工具无法解决与囊性纤维化最相关的令人痛苦的慢性症状。方法：对 41 名患有囊性纤维化的青少年和成人进行了基于初级姑息治疗框架的针对囊性纤维化的结构化评估。进行了描述性和相关性分析。结果：患者报告了许多身体和心理症状（平均每名患者 10 种），其中心理症状被认为更令人痛苦。焦虑 (34%) 和抑郁 (44%) 很普遍，并且与身体症状和 CF 自我管理困难造成的痛苦相关，但与疾病严重程度无关。结论：患有 CF 的个体，无论疾病严重程度如何，都面临着管理症状负担的挑战。经常报告的症状并不总是与痛苦相关，这表明个体化评估的重要性。 CF-CARES（应对、目标评估和缓解不断发展的 CF 症状）初级姑息治疗评估模型为经历慢性症状的患者提供了一个框架，以与临床医生一起探索干预方案。 (C) 2017 年欧洲囊性纤维化协会。由 Elsevier B.V. 出版。保留所有权利。
Background: Current palliative care tools do not address distressing chronic symptoms that are most relevant to cystic fibrosis.Methods: A CF-specific structured assessment based on a primary palliative care framework was administered to 41 adolescents and adults with CF. Descriptive and correlational analyses were conducted.Results: Patients reported numerous physical and psychological symptoms (mean of 10 per patient), with psychological symptoms rated as more distressing. Anxiety (34%) and depression (44%) were prevalent and correlated with distress attributable to physical symptoms and difficulty with CF self-management, but did not correlate with disease severity.Conclusions: Individuals with CF, regardless of disease severity, face challenges managing symptom burden. Frequently reported symptoms are not consistently associated with distress, suggesting the importance of individualized evaluation. The CF-CARES (Coping, goal Assessment, and Relief from Evolving CF Symptoms) primary palliative care assessment model provides a framework for patients experiencing chronic symptoms to explore interventional options with their clinicians. (C) 2017 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.