Julie Balzano1, Ashley Fresenius2, Patricia Walker2, Maria Berdella2, Russell K Portenoy3, Marilyn Bookbinder3, Myra Glajchen3, Amy Plachta2, Elinor Langfelder-Schwind2, Jack Chen3, Lara Dhingra4. 1. James J. Peters VA Medical Center, 130 West Kingsbridge Road, Bronx, NY 10468, USA. 2. The Cystic Fibrosis Center, Department of Pulmonary Medicine, Mount Sinai Beth Israel, First Avenue at 16th Street, New York, NY 10003, USA. 3. MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA. 4. MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA. Electronic address: LDhingra@mjhs.org.
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.
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 CFpatients 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 CFpatients. Future studies should assess the system's generalizability and staff resources when implementing reminders and non-web methods of completion.
Authors: Mara R Hobler; Ruth A Engelberg; J Randall Curtis; Kathleen J Ramos; Miriam I Zander; Shacole S Howard; Christopher H Goss; Moira L Aitken Journal: J Palliat Med Date: 2018-01-03 Impact factor: 2.947
Authors: Jennifer Cronly; Alistair J Duff; Kristin A Riekert; Ivan J Perry; Anthony P Fitzgerald; Aine Horgan; Elaine Lehane; Barbara Howe; Muireann Ni Chroinin; Eileen Savage Journal: BMJ Open Date: 2018-01-21 Impact factor: 2.692
Authors: Dio Kavalieratos; Anna M Georgiopoulos; Lara Dhingra; Melissa J Basile; Elliot Rabinowitz; Sarah E Hempstead; Albert Faro; Elisabeth P Dellon Journal: J Palliat Med Date: 2020-09-16 Impact factor: 2.947