Improving Patient-Reported End-of-Life Data Capture: A Pilot Mixed-Methods Evaluation of an Electronic Patient...

To evaluate feasibility, death-anchored timeliness, and acceptability of a messaging-based electronic patient reported outcomes (ALVA) for after-death Quality of Dying and Death (QODD) collection from bereaved caregivers in Chile.

We conducted a single-arm, mixed-methods pilot study. After consent, caregivers completed the Spanish QODD via ALVA on common messaging apps (no installation). The primary end point was completion among registered participants; on-time was prespecified as 14-84 days after death. Proportions include 95% CIs.

Of 36 invited, 21 registered; pre-registration losses were dominated by hospital-based consent logistics (11/36). Among registered, QODD completion was 100% (21/21) and postquestionnaire interview completion was 95.2% (20/21; 95% CI, 77.4 to 99.2); all QODD completions occurred via chat. Median time to completion was 15 minutes (IQR, 10-22; range, 0:05-23:34); 50% finished ≤15 minutes, 75% ≤20 minutes, 85% ≤60 minutes, and 100% within 24 hours (three pause/resume sessions ≥12 hours). Among those with death-anchored timing data (n = 20), on-time completion was 65.0% (13/20; 95% CI, 43.3 to 81.9); median death to completion was 74 days (IQR, 50-85; range, 7-93). Participants' mean age was 49.1 years (standard deviation, 14.2), and relationships were predominantly children (70%) and spouses (15%).

ALVA achieved near-universal completion among registered caregivers (100% QODD; 95% including postinterview) with rapid, same-day questionnaire completion and feasible death-anchored timeliness, supporting scale-up and a comparative trial to optimize implementation and equity.