成年囊性纤维化患者未满足的疼痛和症状管理需求的患病率。
Prevalence of unmet pain and symptom management needs in adults with cystic fibrosis.
作者信息
Dubin Ethan, Lowers Jane, Dellon Elisabeth P, Hempstead Sarah, Faro Albert, Tallarico Erin, Fitzpatrick Anne, Hunt William R, Kavalieratos Dio
机构信息
Rollins School of Public Health, Emory University, Atlanta, GA, United States; Division of Palliative Medicine, Department of Family and Preventive Medicine, Emory University, Atlanta, GA, United States.
Division of Palliative Medicine, Department of Family and Preventive Medicine, Emory University, Atlanta, GA, United States.
出版信息
J Cyst Fibros. 2023 Mar;22(2):352-355. doi: 10.1016/j.jcf.2022.08.006. Epub 2022 Aug 14.
BACKGROUND
Although people living with CF (PLwCF) commonly report pain and other symptoms, little is known regarding their experiences of living with and accessing treatment for burdensome symptoms.
METHODS
PLwCF completed online questionnaires assessing symptom prevalence and distress and were also asked about experiences accessing pain and symptom treatment, using both closed-ended and free-text entries.
RESULTS
Pain was the most prevalent symptom experienced among the 55 participants (76%) and the symptom that most commonly caused distress (64%). PLwCF not on CFTR modulator therapy were likelier to endorse pain as distressing (p = 0.007). Respondents expressed that their pain was commonly underrecognized and undermanaged, they desired a multi-modal approach to treatment, and noted concerns about disease progression affecting their symptom management options.
CONCLUSIONS
Our study suggests that PLwCF often have unmet symptom management needs that may impair quality of life.
背景
尽管囊性纤维化患者（PLwCF）普遍报告存在疼痛和其他症状，但对于他们在忍受和接受繁重症状治疗方面的经历却知之甚少。
方法
PLwCF完成了在线问卷，评估症状的普遍性和困扰程度，并通过封闭式和自由文本条目询问他们在获取疼痛和症状治疗方面的经历。
结果
在55名参与者中，疼痛是最普遍出现的症状（76%），也是最常导致困扰的症状（64%）。未接受CFTR调节剂治疗的PLwCF更有可能认为疼痛令人困扰（p = 0.007）。受访者表示，他们的疼痛通常未得到充分认识和管理，他们希望采用多模式治疗方法，并指出担心疾病进展会影响他们的症状管理选择。
结论
我们的研究表明，PLwCF常常有未得到满足的症状管理需求，这可能会损害生活质量。
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