Quality of life and perceived burden of the primary caregiver of patients aged 70 and over with cancer 5 years after initial treatment

PURPOSE: Long-term effects of being the primary caregiver of an older patient with cancer are not known. This study aimed to assess health-related quality of life (HRQoL) in primary caregivers of patients aged 70 and older with cancer, 5 years after initial treatment. Secondly, to compare the HRQoL between former primary caregivers whose caregiving relationship had ceased (primary caregiver no longer directly assisting the patient because of patient death or removal to another city or admission to an institution) and current caregivers, and to determine the perceived burden of the primary caregivers. METHODS: Prospective observational study including primary caregivers of patients aged 70 and older with cancer. HRQoL and perceived burden were assessed using the SF-12 and Zarit Burden Interview (ZBI) at baseline and 5 years after initial treatment. RESULTS: Ninety-six caregivers were initially included; at 5 years, 46 caregivers completed the SF-12 and ZBI between June 15 and October 26, 2020. Primary caregiver’s HRQoL scores had significantly decreased over time for physical functioning (mean difference = −10, p=0.04), vitality (MD= −10.5, p=0.02), and role emotional (MD= −8.1, p=0.01) dimensions. The comparison at 5 years according to caregiving status showed no difference for all HRQoL dimensions. There was no decrease in perceived burden at 5 years. CONCLUSION: Some dimensions of HRQoL decreased at 5 years with a stable low perceived burden. TRIAL REGISTRATION: NCT04478903 SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00520-023-07594-w.