Gravis, G., Protiere, C., Eisinger, F., Boher, J.M., Tarpin, C., Coso, D., . . . Viens, P. (2011). Full access to medical records does not modify anxiety in cancer patients: Results of a randomized study. Cancer, 117, 4796–4804.doi: 10.1002/cncr.26083
To assess the effect of providing systematic full access to the medical record on patients’ anxiety, quality of life, and satisfaction
Participants were randomly assigned to either requested access to the medical record or systematic full access groups. In the requested access group, information and the medical record were delivered to the patient at the physician’s or patient’s request. In the systematic access group, patients were given a briefcase that they were to bring to each visit. The briefcase was filled with administrative data as well as reports of surgery, pathology, laboratory, radiology, and hospitalizations and nursing narrative notes. Documents were provided to the patient as well as on CDs, including radiology images. Documents were updated at each visit, and in between visits materials were mailed to the patient. A coordinator provided updated information for the patient to put in the briefcase and explained the material to the patient in a standardized way. Medical and nursing staff also provided information and answered patient questions. Patients completed questionnaires for the study data collection at the beginning of the study and at the end of their first chemotherapy cycle.
Patients were undergoing the active treatment phase of care.
The study was a randomized controlled trial with repeated measures.
Mean anxiety score at baseline was 40.7 in all patients (scores of 20–80 generally indicate a higher level of anxiety). There were no differences at baseline between groups and no change over time in the systematic full access group. There was a significant reduction in anxiety at the end of treatment in the requested access group (p = 0.009), but no differences between study groups. There were no differences between groups in quality-of-life findings. A higher percentage of patients in the full access group were completely satisfied with treatment explanations than in the requested access group; however, the difference between groups was not significant. Full access was not a source of anxiety for 68.8% of patients, and 82.2% said they understood the information.
Provision of full information in an organized medical record provided to patients did not increase patient anxiety, was practical to implement, and may have a positive effect on patient satisfaction with information.
This study outlines a practical way to provide full medical record information to patients in a way that was acceptable to them. Findings show that provision of full information did not increase patient anxiety and was associated with a tendency for patients to have more satisfaction with information provision. This may be a useful approach to engage patients in their care. Most of these patients were fairly well-educated, so it is not clear whether these results can be generalized to less educated patients.