Aims and background: In Italy more than 55% of cancer patients live for more than 5 years after diagnosis, sometimes with several cancer-related sequelae. For this reason rehabilitation must offer not only physical interventions but also psychological, clinical, social and nutritional support. The CAREMORE pilot study was designed to assess whether cancer registries could serve to collect information on rehabilitation services, to describe and quantify the services provided by the National Health Service, and to examine the allocation of rehabilitation services to cancer patients.
Methods and study design: This was a pilot population-based cohort study. A sample of 1200 patients was identified from the databases of the Varese, Genoa, Reggio Emilia, Sassari and Ragusa cancer registries, all diagnosed in 2002 and followed for 5 years. For 4 cancer sites a list of rehabilitation items to be collected was drafted by a joint community of researchers and voluntary associations, with variables regarding rehabilitation data and follow-up. Data were analyzed by groups of patients, vital status, sex, and age.
Results: This pilot study suggested it is useful to collect information on several rehabilitation services: disability benefits, home care, aids and other support; it was not possible to collect reliable information on nutritional and psychological rehabilitation. In all, 36% of the sample applied for disability benefits, but with important differences between cancer sites. Eleven percent of the sample obtained home care, with no substantial differences between cancer sites, and 16% received at least one aid, with percentages varying from 27% for rectal cancer to 8% for lymphoma patients.
Conclusions: The pilot study indicated that cancer registries could collect information on rehabilitation services. In the future it would be interesting to expand the roles of these registries to factors that influence quality of life, taking into account the possibility of collecting more information by actually interviewing patients.