Development of Module to Examine Training of the Hospice Primary Caregiver (S723)

Abstract

Methods. The model elements include: 1) monthly Web-based screening, 2) triage of patients who request a rapid response to address a source of distress, and 3) enhanced availability of palliative care throughout their disease. CF patients also provide baseline and quarterly outcome data. Eligible adults with life expectancy >6 months complete the Memorial Symptom Assessment Scale-CF, PROMIS Anxiety-Short Form (PASF), PROMIS Depression-Short Form (PDSF), and CF Questionnaire-Revised (CFQ-R). Results. Initial baseline data (n1⁄461; M age1⁄438.4 years; SD1⁄413.0; 52.5% women; 91.8% White) show that the most prevalent symptoms are cough (80.3%); fatigue (63.9%); difficulty sleeping (59.0%); sinus discharge (52.5%); and dyspnea (50.8%). Symptoms rated as ‘‘quite a bit’’ or ‘‘very’’ distressing include feeling irritable (61.5%); fatigue (48.7%); and cough (42.9%). PASF scores (T1⁄452.1; range1⁄437.1-80.1) and PDSF scores (T1⁄452.1; range1⁄438.2-78.2) suggest that 21.3% and 9.8% of patients report higher anxiety and depressive symptoms respectively, than the general adult population. On the CFQ-R, treatment burden (M1⁄453.5; SD1⁄425.3); vitality (M1⁄454.8; SD1⁄420.4); and health perceptions (M1⁄457.6; SD1⁄424.2) represent the poorest QOL domains. Conclusions. Initial data suggest high symptom burden in this sample. Implications for Research, Policy, or Practice. Our screening-and-early-intervention model has the potential to improve symptom distress for the CF population.