Preliminary findings from the ALVA ePRO Platform pilot study: A novel approach to collecting quality of dying and death data among informal caregivers in palliative care.

Abstract

11128 Background: Quality of Dying and Death (QODD) is a pivotal outcome in end-of-life care, yet traditional data collection methods, such as phone calls, often suffer from low compliance and significant caregiver burden. The ALVA ePRO platform, a novel tool developed for collecting Patient-Reported Outcomes (PRO) via text messaging apps, aims to overcome these challenges by improving data collection efficiency and caregiver experience. This study evaluates the feasibility, compliance, and acceptability of ALVA ePRO among informal caregivers of terminal cancer patients in a Latin American palliative care setting. Methods: We conducted a pilot, single-arm study with 21 informal caregivers of terminal cancer patients. Participants received the QODD questionnaire through their preferred text messaging app. Caregivers who preferred traditional phone calls were allowed to use that method. Compliance was measured by the completion rate of the questionnaires, while acceptability was assessed through semi-structured interviews. Descriptive statistics were used for quantitative outcomes. Results: A total of 38 caregivers were invited to participate, and 21 caregivers signed the informed consent. Of the 21 participants, 20 completed the questionnaire, while 1 did not due to difficulty understanding the questions. Completion times ranged from 5 minutes to 23 hours and 34 minutes, highlighting considerable variability. Reasons for non-participation included technical issues, scheduling conflicts, and caregiver reluctance to attend the hospital. Preliminary interview data revealed that caregivers found the platform user-friendly and appreciated the flexibility it offered, though a few faced emotional challenges when recalling sensitive experiences. Conclusions: The ALVA ePRO platform demonstrates high acceptability and a strong completion rate, with significantly improved compliance compared to historical phone-based methods. It also significantly improved adherence and completion compared to our previous phone call approach using the same questionnaire. Interest in participation increased from 67.0% to 81.6%, and the completion rate from 92% to 95%. These findings suggest that text message-based data collection is an effective approach for collecting QODD data in palliative care, particularly in settings with logistical or emotional barriers to traditional methods. Future work will focus on refining the platform and exploring its scalability for larger cohorts and other palliative care contexts. Summary of key measures and completion time for the ALVA ePRO Platform pilot study. Measure Preliminary Result Enrollment (target: 20) 21 signed consent Completion rate 95% of enrolled participants Average Completion Time 174 minutes Median Completion Time 16 minutes Messaging app used Whatsapp (100%)