Objective: To describe the effect of terminal cancer on the patient’s family, finances and daily life.
Methods: A cluster sample of 2000 adults (⩾18 years old) who had died from cancer, and who were representative of Italy, was studied. 1900 caregivers were identified and 68% responded to a post-bereavement survey. Caregivers included the patient’s child (46%), his/her spouse (31%), other relatives or friends (20%) or a health professional (3%). The median age of a caregiver was 54 years and 69% were females. During the last 3 months of the patient’s life, 44% of caregivers reported difficulties in their regular employment.
Results: Of the 68% of families who had to pay for some of the care, 37% had to pay for drugs, 36% for nursing and assistance and 22% for physicians. Paying for care was more frequent in the south of Italy (OR 2.5; 95% CI 1.0 to 6.3) and when the patient was a housewife (OR for unit increase 2.7; 95% CI 1.6 to 6.1). To cover the costs of patient care, 26% of families used all or most of their savings. Economic difficulties were greater in the south of Italy (OR 3; 95% CI 1.8 to 5.1), for female caregivers (OR 1.4; 95% CI 1.0 to 1.9) and for disadvantaged patients. The duration of time the patient was completely dependent strongly determined the effect caregiving had on their regular employment and on the family’s financial situation.
Conclusions: Although in Italy families are responsible for a small percentage of the overall costs of patient care, the effect of cancer on savings and daily life can be substantial. Strong geographical and gender differences emerged from this study.
- LHD, local health districts
- ISDOC, Italian Survey of Dying of Cancer
- SES, socioeconomic status
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Funding: This work was supported by a grant from the Italian Minister of Health (Progetti di Ricerca Finalizzata 2001–3).
ISDOC Working Group: Massimo Costantini, Monica Beccaro, Maria Pia Sormani, Paolo Bruzzi (Unit of Clinical Epidemiology, National Cancer Institute, Genova); Franco Merlo (Unit of Environmental Epidemiology, National Cancer Institute, Genova); Gabriella Morasso, Silvia Di Leo (Psychology Service, National Cancer Institute, Genova); Paolo Giorgi Rossi, Piero Borgia (Agency for Public Health, Lazio Region, Rome); Maurizio Montella, Maria Grimaldi (Department of Epidemiology, National Cancer Institute, G Pascale Foundation, Naples); Eugenio Paci, Nicoletta Susini, Riccardo Cecioni, Guido Miccinesi (Clinical Epidemiology, Centre for the Study and Prevention of Cancer, Florence); Renato Pisanti (Labos Foundation, Rome).
Competing interests: None.
Ethical approval: The Ethics Committee of the National Cancer Institute of Genoa approved the national survey. Only one LHD requested approval of the protocol from the local ethics committee. According to the Italian law on use and processing of sensitive data, a notification of the study and its procedures was sent to the Italian Data Protection Authority.