Web-based symptom screening in cystic fibrosis patients: A feasibility study
Web-based symptom screening in cystic fibrosis patients: A feasibility study
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DOI：
10.1016/j.jcf.2015.11.001
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发表时间：
2016-01-01
影响因子：
5.2
通讯作者：
Dhingra, Lara
中科院分区：
文献类型：
--
作者：
Baizano, Julie;Fresenius, Ashley;Dhingra, Lara
背景：囊性纤维化（CF）造成高疾病负担。筛查可以识别出可能从症状或其他痛苦来源的干预中受益的患者。我们评估的可行性，一个基于网络的系统进行例行monitoring.Methods：成年CF患者参加了一项研究，姑息治疗服务交付完成了基于网络的评估，每30天全球的困扰，身体和心理症状困扰，并与CF临床医生讨论提前护理计划（ACP）的感知效益。可行性进行了评估的调查完成率，调查提醒，并错过了调查在9个月的滚动enrollingenrollmentperiod.Results：74名参与者（47.3%的妇女，94.4%白色），36.7%的共病糖尿病，和56.9%的FEV1%预测得分为40-69。在评估期间，患者共完成了566项调查中的456项（80.6%），每30天一次。65人（87.8%）在线完成了508项调查中的405项（79.7%），9人（12.2%）使用在线、电话和邮件相结合的方法完成了58项调查中的51项（88.0%）。许多调查是在没有提醒的情况下完成的（在线：405份中的261份[64.4%];综合方法：51份中的29份[56.9%]），166份（36.4%）调查需要1份或多份提醒。此外，23.0%（17）的患者注意到升高的全球困扰; 20.3%（15）赞同身体症状困扰，12.2%（9）有心理困扰，58.1%（43）报告说，讨论ACP将是benefit.Conclusions：重复的基于网络的筛查症状困扰和ACP偏好是可行的成人CF患者。今后的研究应评估该系统在采用提醒和非网络填写方法时的普遍性和工作人员资源。(C)2015年欧洲囊性纤维化协会。Elsevier B. V.出版，保留所有权利。
Background: Cystic fibrosis (CF) causes high illness burden. Screening may identify patients who could potentially benefit from interventions for symptoms or other sources of distress. We evaluated the feasibility of a web-based system for routine monitoring.Methods: Adult CF patients enrolled in a study of palliative care service delivery completed web-based assessments every 30 days on global distress, physical and psychological symptom distress, and the perceived benefits of discussing advance care planning (ACP) with CF clinicians. Feasibility was assessed by the rate of survey completion, survey reminders, and missed surveys during a 9-month rolling enrollment period.Results: Of 74 participants (47.3% women, 94.4% white), 36.7% had comorbid diabetes, and 56.9% had an FEV1% predicted score of 40-69. In total, patients completed 456 (80.6%) of 566surveys every 30 days over the assessment period. Sixty-five (87.8%) completed 405 (79.7%) of 508 surveys online and 9 (12.2%) completed 51 (88.0%) of 58 surveys using a combination of online, telephone, and mail-based methods. Many surveys were completed without reminders (online: 261 [64.4%] of 405; combined methods: 29 [56.9%] of 51), with 166 (36.4%) surveys requiring 1 or more reminders. Further, 23.0% (17) of patients noted elevated global distress; 20.3% (15) endorsed physical symptom distress, 12.2% (9) had psychological distress, and 58.1% (43) reported that discussing ACP would be beneficial.Conclusions: Repeated web-based screening for symptom distress and ACP preferences is feasible in adult CF patients. Future studies should assess the system's generalizability and staff resources when implementing reminders and non-web methods of completion. (C) 2015 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.