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

Introduction Patient benefits of electronic medical record (EMR) access through fully integrated personal health records (PHR) may be substantial and foremost include enhanced information flow between patient and practitioner. An emergent technology, the actualized benefits to complex patient groups remain largely unknown. MyMDAnderson provides web-based access to M.D. Anderson Cancer Center's EMR, including clinic notes and MRI, pathology and surgical reports. Using patient-sensitive indices, this study sought to characterize PHR use and outcomes in glioma patients.

Methods Cross-sectional, patient-reported survey and PHR-derived user data from 186 patients were analyzed using descriptive and inferential statistics. Logistic regression assessed disparities between users and non-users. Dependence of PHR access on 3 treatment stages (newly diagnosed, active treatment, or post-treatment) was tested through analysis of variance. Path analysis evaluated relationships between PHR access and disease-related uncertainty, symptom experience, and mood.

Results Patients had a mean age 44.2 years (range 19 - 80), 77% with a high-grade tumor. The majority of patients (60%) had logged into MyMDAnderson at least once (range 0 – 126) in the past 6 months. Strongest predictors of PHR access included ≥ college-level education, high Karnofsky performance score, higher income, and Texas residency. Patients undergoing treatment were more active PHR users. High PHR use was associated with lower disease-related uncertainty and lower symptom severity. In the final model, mood (e.g., anxiety) was not directly related to PHR use, but mediated an association between symptom experience and uncertainty.

Conclusion While many reports presume better disease and symptom comprehension for patients with access to their EMR, this study is the first to establish the association between low symptom severity, low disease-related uncertainty and PHR use in glioma patients. Early examination with patient-sensitive, universal indices provides an important basis for critical evaluation and continuing discussion to better structure this benefit for neuro-oncology patients and allow cross-comparison to other patient groups.