Objective: To review studies of patients' and carers' experience of prostate cancer care.
Design: Narrative literature review.
Methods: Search strategies were developed for the following databases: MEDLINE (1966-2006), EMBASE (1980-2006), CINAHL (1982-2006) and PsycINFO (1987-2006). A search of SIGLE (System for Information on Grey Literature in Europe) was also undertaken. Experience was defined as patients' and carers' reports of how care was organized and delivered to meet their needs. A narrative summary of the included papers was undertaken.
Results: A total of 90 relevant studies were identified. Most studies reported on experiences of screening, diagnosis, the treatment decision, treatment and post-initial treatment. Few studies reported on experiences of the stages of referral, testing, and further treatment and palliative care, and no studies reported on monitoring or terminal care.
Conclusions: Although some phases of care have not been investigated in detail, there is evidence that: (i) many patients have a low level of knowledge of prostate cancer; (ii) patients with prostate cancer and their carers need information throughout the care pathway to enable them to understand the diagnosis, treatment options, self-care and support available; and (iii) increasing patient knowledge and understanding of prostate cancer (e.g. through interventions) are often associated with a more active role in decision making (e.g. screening, treatment decision).