Personal health records, symptoms, uncertainty, and mood in brain tumor patients.

Background: The advantages of patient access to the electronic medical record (EMR) through integrated personal health records (PHR) may be substantial, and foremost is the enhanced information flow between patient and practitioner. Because this is an emerging technology, the actualized benefits to complex patient groups remain largely unknown. MD Anderson Cancer Center provides web-based PHR portal access to the EMR including clinic notes, MRI results, and pathology reports. This study sought to evaluate PHR use by glioma patients.

Methods: Cross-sectional survey and PHR-derived user data from 186 patients were analyzed using descriptive and inferential statistics. Logistic regression assessed disparities between users and nonusers. Dependence of PHR access on treatment stage was tested through linear regression. Path analysis evaluated PHR access, disease-related uncertainty, symptom experience, and mood.

Results: Patients averaged 44.2 years (range 19y-80y), 77% had a high-grade tumor, and 60% had accessed PHR at least one time (range 0-126). Strongest predictors of access included education level (college level or higher), low performance status, middle income, and in-state residency. Patients undergoing treatment were more active users. PHR access was associated with lower disease-related uncertainty and lower symptom severity. Mood was not directly related to PHR use but mediated an association between symptom severity and uncertainty.

Conclusions: While many reports presume better disease and symptom understanding for patients with EMR access, this study is the first to correlate PHR use to lower patient uncertainty levels. Early examination of PHR provides an important basis for critical evaluation and optimization to better structure this benefit for brain tumor patients.