Quality of Life and Needs in Informal Caregivers of Elderly (ICE): Results From a Prospective Multicentric Open-label French Study

Abstract Background. Better knowledge on caregivers is required to address their needs with dedicated support. The results from the ICE study explored the health-related quality of life (HRQoL) in caregivers of elderly with chronic disabilities, after social intervention or not.Methods. Caregivers of patients (≥60 years) with cancer, neurodegenerative disease, stroke, or age-related macular degeneration were randomized 1:1 in the supportive intervention group (support from social workers and information booklet) or in the control group (information booklet only), and completed questionnaires (short form-36 questionnaire (SF-36), Hospital Anxiety Depression Scale (HADS), and Zarit Burden Interview (ZBI) quarterly (6-monthly for ZBI) during two years. Caregiver characteristics, and caregiver HRQoL assessment through SF-36, HADS, ZBI scores at baseline, at 12 months (M12) and 24 months (M24) on an individual and an aggregate level, were described using paired-t test comparisons, and minimal important difference. Longitudinal assessments of caregiver HRQoL over the two first years were reported.Results. From 2015 to 2019, 179 caregivers supported patients with cancer (n=92, 52%), Alzheimer (n=46, 26%), Parkinson (n=20, 11%) were randomized. No evidence differences in SF-36 PCS and MCS summary scores mean change over time, neither in HADS anxiety and burden ZBI scores were shown. However, HADS depression mean changes showed a clinically significant increase of 1.4 (4.0) at M12, and 1.7 (4.1) at M24 in control group. Conclusion. Appropriate support need to be proposed to improve the global caregiver HRQoL, and reduce depression at 1 and 2 years.Trial registration number: This study was registered retrospectively with ClinicalTrials.gov NCT02626377 on 9th December 2015.