(192) Feasibility of monthly web-based screening for pain and symptoms in cystic fibrosis patients

Pain and symptom burden among adults with cystic fibrosis (CF) is high as patients in the U.S are living longer with this disease. However, few web-based monitoring systems to assess pain, other symptoms, and symptom distress exist for CF patients. We examined the feasibility of a web-based symptom monitoring system as part of a larger trial to evaluate a novel service delivery model for CF patients. This care model addresses needs for palliative interventions for CF patients throughout their disease using: repeated web-based screening; triage for early interventions, and early referral to a specialist palliative care team. Eligible adults at a CF Center with life expectancy ≥ 6 months were emailed a link to a 12-item survey assessing pain and symptom burden every 30 days. Additionally, patients completed questionnaires on symptom prevalence, distress, and other domains at baseline and quarterly. Feasibility was evaluated by survey completion rate (target was 80%). In total, 74 participants (52.7% women; 91.9% White, mean age=37.1 years) completed 679 of 810 (83.8%) web-based screenings over the 15-month assessment period. Forty-four (59.5%) had elevated scores triggering a triage evaluation and 27 (61.4%) completed evaluations by a social worker. Global distress (52.3%), severe pain-related distress (31.8%), and frequent psychological distress (27.3%) were the most common triggers requiring evaluation. At baseline, the most prevalent symptoms were cough (81.1%), fatigue (64.9%), difficulty sleeping (56.8%), and sinus discharge (51.4%). The most severely distressing symptoms at baseline were constipation (52.3%), feeling bloated (44.0%), pain (43.4%), dyspnea (32.4%), and fatigue (31.3%). Repeated web-based screening for pain and symptom burden is feasible in adult CF patients. The prevalence of symptom burden and other sources of distress is high, and justifies the development and testing of early palliative care models for this population. Supported by: Cystic Fibrosis Foundation Therapeutics, Inc. (PORTEN13A0).