Patient-held records in cancer and palliative care: a randomized, prospective trial

Objectives: To evaluate prospectively the introduction of a patient-held record (PHR) in the management of patients with advanced cancer and palliative care needs. Design: a) A prospective, parallel group, randomized controlled trial. b) A postal survey of the opinions of health professionals whose patients had a PHR. Setting: Out-patient oncology centres in Glasgow and Edinburgh, hospice home-care services across the central belt in Scotland. Participants: A total of 244 patients with advanced cancer recruited either from oncology outpatient clinics or hospice home-care services. The baseline interview was completed by 231 patients and 117 were randomized to receive the PHR. Between 4 and 6 months later, 80 patients with the PHR and 97 without were interviewed. Of the 83 health professionals caring for patients known to have received the PHR 63 replied to a postal questionnaire. Main outcome measures: Subjective views of patient satisfaction with communication and perception of communication between patient and health care professionals as determined by structured interview at baseline and after 4-6 months. Results: We could identify no improvement in the provision of information to patients, or patients' satisfaction with information provided by outpatient doctors, GPs, practice and community nurses and hospice or palliative home care staff. Overall, patients' perception of communication between all staff involved in their care with and without PHRs was excellent in 24% and 21%, respectively, or very good in 56% and 58% (P=0.89). The PHR made no difference to information passing between health professionals, or to the degree of family involvement. Most of those who had a record found it of some use and benefit. Conclusion: This study provides no evidence on which to base the widespread promotion of PHRs, although local projects with committed clinicians and patients may well prove popular and effective.