Evaluation of a patient-held record for patients with cancer

The objective of this study was to evaluate a patient-held record (PHR) for patients with cancer. A randomized controlled trial (RCT) was conducted of a PHR to be used by patients newly diagnosed with lung or colorectal cancer (hospital), patients with cancer at any stage (community) and professionals involved in their care, together with surveys of health professionals to gauge views on PHR. Main outcome measures were patient satisfaction with information and communication, and patient and healthcare professionals' views of PHR. The only significant difference was 86% of control compared with 58% of intervention patients were very satisfied with information received at the end of treatment (odds ratio 4.4, 95% confidence interval 1.2-15.6, P < 0.05). Fifty-three per cent of intervention respondents found the PHR helpful (63% hospital vs. 38% community patients), and 69% felt that it would be useful to them in the future. Primary healthcare (PHC) professionals found the PHR of more benefit than those working in hospitals (P < 0.05). The PHR did not improve measures of patient satisfaction with information or communication. Despite its limited use by many health professionals, the PHR was well received by recently diagnosed patients, and those who did not receive negative responses to it from staff involved in their care. It was also positively valued by staff in PHC. An evaluation of a customized record provided at the time of diagnosis is warranted.