Web-based symptom screening in cystic fibrosis patients: A feasibility study
Julie Balzano, Ashley Fresenius, Patricia Walker, Maria Berdella, Russell K Portenoy, Marilyn Bookbinder, Myra Glajchen, Amy Plachta, Elinor Langfelder-Schwind, Jack Chen, Lara Dhingra, Julie Balzano, Ashley Fresenius, Patricia Walker, Maria Berdella, Russell K Portenoy, Marilyn Bookbinder, Myra Glajchen, Amy Plachta, Elinor Langfelder-Schwind, Jack Chen, Lara Dhingra
Abstract
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 566 surveys 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.
Keywords: Advance care planning; Cystic fibrosis; Symptom burden; Symptom screening; Telehealth; Web-based monitoring.
Copyright © 2015 European Cystic Fibrosis Society. All rights reserved.
Source: PubMed