Access to personal medical records increases satisfaction among new cancer patients

Most cancer patients say they are eager to receive comprehensive information about their disease, but many physicians believe that providing it increases anxiety and may be deleterious for patients. To clarify the issue, Gwenaelle Gravis, MD, of the Paoli-Calmettes Institute in Marseille, France, and her colleagues compared two types of information delivery on cancer patients' anxiety, quality of life, and satisfaction: providing systematic full access to an organized medical record (OMR) versus "on request information."

The randomized study included 350 patients who were recently diagnosed with breast, colon cancer, or lymphoma, and who were treated with chemotherapy at the Paoli-Calmettes Institute's Regional Comprehensive Cancer Center. Patients who had the opportunity to accept an OMR could receive a briefcase (that the patient was advised to bring to each visit so that it could be updated) that included administrative information and reports on surgery, pathology, hospitalizations, nurse narratives, radiology, and biology as well as overall information concerning the patient's treatment. Patients also received a medical lexicon and a user guide, plus help from medical staff to understand the various documents. Most patients (98 percent) who had the opportunity to obtain an OMR chose to do so. Patients who received "on request information" were provided with information and medical records only at the physician's initiative or upon the patient's request.

After exclusions for various reasons, 295 patients were analyzed. Anxiety levels and quality of life scores were similar in both groups during the study; however patients with OMR access were 1.68 times more likely to be satisfied with information and were 1.86 times more likely to feel fully informed.

The investigators found that 70.4 percent of the patients who received an OMR said that in hindsight they would choose again to receive it, and 74.8 percent did not regret their choice. The majority of patients declared that the OMR had not been a source of anxiety for them, that they understood the information enclosed, and that they did not discover any unwanted information. Most patients also said that the OMR allowed them to understand their disease more thoroughly and that it helped them discuss their condition with their relatives and physicians.

"Information is crucial to make decisions regarding treatment options and, for the patient and his family, to better cope with the disease and its implications," said Dr. Gravis. "Having full access to his own medical record with the possibility to consult it only if desired increases the patient's trust in the physician and medical team," she added.