Prevalence of unmet palliative care needs in adults with cystic fibrosis.
Prevalence of unmet palliative care needs in adults with cystic fibrosis.
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DOI：
10.1016/j.jcf.2019.11.010
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发表时间：
2020-05
期刊：
影响因子：
--
通讯作者：
Kavalieratos D
中科院分区：
文献类型：
--
作者：
Trandel ET;Pilewski JM;Dellon EP;Jeong K;Yabes JG;Moreines LT;Arnold RM;Hoydich ZP;Kavalieratos D
许多患有囊性纤维化（CF）的成年人的身体和情绪负担损害了生活质量（QoL）。姑息治疗（PC）可改善其他严重疾病患者的生活质量，但CF患者可满足的全部姑息治疗需求尚不清楚。我们调查了164名CF患者，使用支持性护理需求调查-34 （SCNS-34）评估五个领域未满足的PC需求，使用埃德蒙顿症状评估系统（ESAS）评估症状负担，使用囊性纤维化问卷-修改（CFQ-R）评估CF特异性生活质量。我们评估了SCNS-34结构域评分与应答者特征（包括症状负担和FEV1）之间的关系。中位年龄为29岁；56%的受访者为男性。预计中位FEV1为57%。78%的受访者报告PC需求未满足≥1个；身体和日常生活需求（72%）和心理需求（66%）最为普遍。症状负担与SCNS-34各域得分均相关，且与生理域（r=0.79）和心理域（r=0.72）得分密切相关。FEV1与物理域评分呈中度负相关（r= - 0.41）。SCNS-34结构域得分与CFQ-R结构域得分之间45个负相关中有44个显著。患者报告的焦虑和抑郁症状分别与5个和4个SCNS-34域的高分显著相关。CF的成人有大量未满足的PC需求。患者报告的症状负担与报告未满足的PC需求的关系比FEV1更强。使用SCNS-34等工具对未满足的PC需求进行常规筛查，可能使CF护理团队能够优化初级和专业PC的提供。
Physical and emotional burdens impair quality of life (QoL) in many adults with cystic fibrosis (CF). Palliative care (PC) improves QoL in other serious illnesses, yet the full array of palliative needs amenable to PC are unknown in CF. We surveyed 164 adults with CF using the Supportive Care Needs Survey-34 (SCNS-34) to assess unmet PC needs across five domains, the Edmonton Symptom Assessment System (ESAS) to assess symptom burden, and the Cystic Fibrosis Questionnaire—Revised (CFQ-R) to assess CF-specific QoL. We assessed associations between SCNS-34 domain scores and respondent characteristics, including symptom burden and FEV1. Median age was 29 years; 56% of respondents were male. Median FEV1 was 57% predicted. 78% of respondents reported ≥1 unmet PC need; physical & daily living (72%) and psychological (66%) needs were most prevalent. Symptom burden was correlated with all SCNS-34 domains scores, and strongly correlated with the physical (r=0.79) and psychological (r=0.72) domain scores. FEV1 was moderately inversely correlated with the physical domain score (r=−0.41). Forty-four of the 45 inverse correlations between SCNS-34 domain scores and CFQ-R domain scores were significant. Patient-reported anxiety and depressive symptoms were significantly associated with higher scores in five and four SCNS-34 domains, respectively. Adults with CF have substantial unmet PC needs. Patient-reported symptom burden is more strongly associated with reporting unmet PC needs than FEV1. Routine screening of unmet PC needs, using tools such as the SCNS-34, may enable CF care teams to optimize the provision of primary and specialist PC.
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