The acceptability of patients with cancer holding their own shared-care record

Abstract

A study was conducted to assess the acceptability of patients with cancer holding a shared care record. A total of 43 patients with advanced cancer and an estimated life expectancy of more than 3 months were recruited from out-patients attending Michael Sobell House Hospice, Oxford, and from three group practices. Personal interviews and questionnaires were completed by patients and their relatives on two occasions. Professional carers were interviewed by telephone and completed a questionnaire on one occasion. The main outcome measure was: reported attitude to, and utilisation of, the record over a period of 12 weeks. The majority of patients used the record throughout the study. At the second interview, 12 of the 30 surviving patients (41%) were seeing their G.P., and 16 (53%) a community nurse, at least weekly. They had also undertaken a median of five out-patient visits to specialists. Approximately half the patients (50%, 95% CI 31–69%), relatives (48%, 95% CI 33–63%), and professionals (58%, 95% CI28–85%) reported that the record helped them a great deal. The diary and medication pages were the most useful features of the record. Our findings suggest that patient held shared-care records are acceptable and helpful for those with advanced cancer in the community.