Study objective: to describe type and quality of care in different settings of care received in the last three months of life by Italian cancer patients.
Setting and participants: random sampling of 2,000 Italian patients died for cancer from a nationally representative random sample of 30 Health Districts (HD).
Study design: interview survey of the non-professional caregiver.
Methods: For each patient died, the caregiver has been identified and contacted with a letter. In this letter we describe the aims of evaluation and we ask for the availability to be interviewed. If the caregiver gives us her/his consent to participate, the interview is realised in a place chosen by the caregiver.
Evaluation: a semi-structured interview. Trained interviewers conduct structured interviews using an adapted version of the schedule (VOICES) used by Addington-Hall in a similar survey in UK. The Italian version of the VOICES includes four sections concerning the problems of the patient and the assistance received in different settings: home, nursing home, hospital and hospice. A fifth section contains questions about: social and economic impact of cancer, the psychological distress experienced by the patient, problems with information from, and communication with professionals, preferred place of death, the support received by family after patient death.
Results: This study was started in all the 30 planned HD. Up till 15 October 2003, it was concluded in 21 HD. We plane to complete the study by the end of November. In these districts, 91.1% of the caregivers were identified, and the interview was completed for 72% of the identified caregivers. Overall, we plane to obtain, from at least 1,300 interviews, a valid and reliable picture of terminal cancer patients needs at a national level.