title: Web-based symptom screening in cystic fibrosis patients: A feasibility study.
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.
authors.affiliation: James J. Peters VA Medical Center, 130 West Kingsbridge Road, Bronx, NY 10468, USA.
authors.forename: Julie
authors.initials: J
authors.lastname: Balzano
authors.affiliation: The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, First Avenue at 16th Street, New York, NY 10003, USA.
authors.forename: Ashley
authors.initials: A
authors.lastname: Fresenius
authors.affiliation: The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, First Avenue at 16th Street, New York, NY 10003, USA.
authors.forename: Patricia
authors.initials: P
authors.lastname: Walker
authors.affiliation: The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, First Avenue at 16th Street, New York, NY 10003, USA.
authors.forename: Maria
authors.initials: M
authors.lastname: Berdella
authors.affiliation: MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA.
authors.forename: Russell K
authors.initials: RK
authors.lastname: Portenoy
authors.affiliation: MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA.
authors.forename: Marilyn
authors.initials: M
authors.lastname: Bookbinder
authors.affiliation: MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA.
authors.forename: Myra
authors.initials: M
authors.lastname: Glajchen
authors.affiliation: The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, First Avenue at 16th Street, New York, NY 10003, USA.
authors.forename: Amy
authors.initials: A
authors.lastname: Plachta
authors.affiliation: The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, First Avenue at 16th Street, New York, NY 10003, USA.
authors.forename: Elinor
authors.initials: E
authors.lastname: Langfelder-Schwind
authors.affiliation: MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA.
authors.forename: Jack
authors.initials: J
authors.lastname: Chen
authors.affiliation: MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA. Electronic address: LDhingra@mjhs.org.
authors.forename: Lara
authors.initials: L
authors.lastname: Dhingra
mesh_terms: D000328:Adult; D032722:Advance Care Planning / Q000458:organization & administration*; D017281:Cost of Illness; D003550:Cystic Fibrosis / Q000523:psychology / Q000628:therapy; D003936:Diagnosis, Computer-Assisted / Q000379:methods*; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008297:Male; D008403:Mass Screening / Q000379:methods*; D010166:Palliative Care / Q000379:methods / Q000523:psychology; D013315:Stress, Psychological / Q000175:diagnosis / Q000503:physiopathology; D063189:Symptom Assessment / Q000379:methods; D014481:United States
keywords: Advance care planning; Cystic fibrosis; Symptom burden; Symptom screening; Telehealth; Web-based monitoring