Supporting In-Home Caregivers in Symptom Assessment of Frail Older Adults with Serious Illness: A Pilot Study.

Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting caregivers in symptom assessment (SA) may reduce suffering. Pilot an SA-Toolkit for caregivers to assess older adults' symptoms at home. Pilot study. English-speaking patients ≥65 years of age and their caregivers from a home-based geriatrics program in San Francisco. With multiple stakeholder input, we created a SA-Toolkit consisting of illustrations depicting symptoms, validated Faces Scale, and easy-to-use tracking system with phone numbers of family/friends/clinicians. At baseline and one week, we assessed change in patients' symptoms and caregivers' self-efficacy with SA (5-point scale) using Wilcoxon signed-rank tests. We assessed acceptability at one week. Eleven patient/caregiver dyads participated in the study. Patients were 84.7 years old (SD 5.7), 81.8% women, 27.3% non-white. From baseline to one week, mean number of symptoms decreased (3.7 [1.5] to 2.6 [1.8],  = 0.03). Specifically, patients with pain decreased from 63.6% to 36.4%, anxiety 54.6% to 18.2%, depression 45.5% to 27.3%, and loneliness 36.4% to 18.2%. Caregiver self-efficacy increased (4.6 [0.3] to 4.8 [0.3],  = 0.09). Patients found the symptom illustrations easy to use (8.7 on 10-point scale), but the Faces Scale less so (7.3/10) because it provided "too many choices." Caregivers liked the SA-Toolkit because it was easy to use; nearly all (10/11, 90%) would recommend it to others. The SA-Toolkit resulted in decreased symptom burden among patients and higher caregiver self-efficacy in SA. The SA-Toolkit is acceptable and may help reduce suffering in frail, older patients.