The user experiences and clinical outcomes of an online personal health record to support self-management of bipolar disorder:A pretest-posttest pilot study

Background: Self-management comprises knowledge, behavior, activities and resources providing people with bipolar disorder (BD) control over fluctuating mood and activity-patterns. The ` Self-management and Dialogue in Bipolar Disorder' project entailed the tailoring of an online personal health record (PHR) originally designed for the chronically ill to monitor condition and share information with their clinician to people with BD (PHRBD). The aim of this study was to evaluate the feasibility, utility and user-experiences of participants with BD, relatives, and healthcare professionals who worked with the PHR-BD.Methods: Post-test online closed-and open ended questionnaires were used to collect information on utility, and user-experiences with PHR-BD. A pre-posttest design to evaluate clinical effects on quality of life, empowerment, symptom reduction, changes in mood and activity, and illness burden and severity at baseline and at 12-months follow-up.Results: Sixty-six participants with BD logged in at baseline. At study endpoint thirty-nine participants with BD, eleven professionals and one family caregiver filled out the evaluations. No significant differences in the clinical outcomes from baseline were found. Qualitative evaluations showed a frequent utility of the mood chart modules, improved communication between clinician and participant with BD and, increased insight in influencing factors of mood fluctuations.Limitations: Small convenience sample, no controls.Conclusions: The option to alternate the interface from a prospective to a retrospective mood chart, and integration with the personal crisis plan was considered to be of added value in self-managing BD. The findings of this study will guide the future implementation of the PHR-BD.