Web-based symptom screening in cystic fibrosis patients: A feasibility study

• Published in: Journal of cystic fibrosis Vol. 15; no. 1; pp. 102 - 108
• Main Authors: Balzano, Julie, Fresenius, Ashley, Walker, Patricia, Berdella, Maria, Portenoy, Russell K, Bookbinder, Marilyn, Glajchen, Myra, Plachta, Amy, Langfelder-Schwind, Elinor, Chen, Jack, Dhingra, Lara
• Format: Journal Article
• Language: English
• Published: Netherlands Elsevier B.V 01.01.2016
• Subjects: Adult; Advance care planning; Advance Care Planning - organization & administration; Cost of Illness; Cystic fibrosis; Cystic Fibrosis - psychology; Cystic Fibrosis - therapy; Diagnosis, Computer-Assisted - methods; Feasibility Studies; Female; Humans; Male; Mass Screening - methods; Palliative Care - methods; Palliative Care - psychology; Pulmonary/Respiratory; Stress, Psychological - diagnosis; Stress, Psychological - physiopathology; Symptom Assessment - methods; Symptom burden; Symptom screening; Telehealth; United States; Web-based monitoring; Cystic fibrosis; Advance care planning; Telehealth; Symptom screening; Symptom burden; Web-based monitoring
• ISSN: 1569-1993; 1873-5010
• DOI: 10.1016/j.jcf.2015.11.001

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 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.