Abstract
Background
Several studies have highlighted the difficulties faced by caregivers of patients with brain tumors. We created the educational workshops called AGAPE. Their aim is to explain precisely the medical aspects of brain tumors, describe resources available, and allow a moment of exchange between caregivers.
Purpose
To evaluate outcomes of AGAPE.
Methods
This was an observational uncontrolled pilot study. Feasibility was evaluated by the caregivers’ attendance of the 2 theoretical scheduled sessions and their satisfaction. Additional outcomes were the percentage of caregivers in favour of AGAPE sustainability and the impact on their quality of life according to CarGOQoL questionnaires (Caregiver Oncology Quality of Life) between baseline before the first workshop and after the last one.
Results
From February 2015 to March 2019, 12 three-month sessions were organized allowing 87 caregivers to participate. 84% of caregivers attended at least 2 theoretical sessions, the level of satisfaction was very high, and all caregivers were in favor of AGAPE sustainability. 36 caregivers submitted completed questionnaires at baseline and after the last workshop attended, separated by more than 2 months. The first workshop took place mostly during or after the adjuvant treatment of their loved ones. Two-thirds of their loved ones had a progressive disease after the first workshop and 21 died. Caregivers’ quality of life was stable between the first and last attended workshop.
Conclusion
Our study showed that AGAPE helped to maintain caregiver’s quality of life despite patient’s disease progression and its feasibility. Moreover, AGAPE may easily be run in other hospitals.