Evaluation of a patient-held record for patients with cancer

Abstract

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.

Patient-held medical records for patients with chronic disease: a systematic review

“…Overall there are no differences for the majority of the 26 measures used in this study. In Lecouturier et al ,14 only one out of eight comparative measures was different—that of patient satisfaction with information received at the end of treatment which favoured the control treatment (p=0.02). In the study by van Wersch et al ,17 fewer PHR users compared with the control group felt they needed more information about their disease and treatment (p≤0.05).…”

Patient-Held Maternal and/or Child Health Records: Meeting the Information Needs of Patients and Healthcare Providers?

“…The six positive outcomes were qualitative assessments of patient benefit [78–83]. One of the two studies with negative results reports less satisfied patients, and the other reports a potential imbalance of power relationship [81, 82]. The seven studies including neutral results, were just that, the results were inconclusive [82–88].…”

Feasibility of a standardised quality of life questionnaire in a weekly diary format for inoperable lung cancer patients

“…It is thus possible that some participants may not have shared their diary because of a lack of opportunity to do so rather than a lack of willingness. This problem has been identified by other researchers (Lecouturier et al, 2002).…”

“…This reason has featured in previous work looking at the utilisation of a patient-held record for lung cancer patients whereby 36% of patients did not offer their record to professionals and gave no particular reason for this action (Lecouturier et al, 2002). Some patients in this study stated that they forgot to bring their diary, which is understandable as many patients find attending oncology outpatient clinics a stressful event especially when they are receiving treatment or results on their progress.…”

“…This is not unusual when implementing a new tool into routine practice (Lecouturier et al, 2002) and a similar study that implemented electronic recording of symptoms at chemotherapy clinics found that the most common barrier to adherence was that staff failed to remind patients to use the system (Basch et al, 2007). Although both community and hospital staff were aware that this study was ongoing and that patients had diaries which they were encouraged to share with them, it was not stipulated that they should ask patients for their diary.…”