Background: A personal health record (PHR) is an electronic record for tracking and managing health information in patients with a chronic illness such as Multiple sclerosis (MS). In this study, an...Show moreBackground: A personal health record (PHR) is an electronic record for tracking and managing health information in patients with a chronic illness such as Multiple sclerosis (MS). In this study, an MS-PHR was evaluated to improve the engagement of patients with MS in their own care. The main purpose of the study was to learn more about the MS-PHR’s usage and psychological effects. Consequently, the MS-PHR’s relation with self-efficacy and experienced quality of care was studied. Methods: This longitudinal research project used a mixed-method design consisting of quantitative and qualitative data. Participants of this study (N = 75), patients with MS of 18 years or older from the Alrijne hospital neurology department, could use the MS-PHR for two years and filled out multiple questionnaires each year. Descriptive analyses were performed to examine the MS-PHR usage and satisfaction. Linear mixed model were performed to examine the change of self-efficacy and experienced quality of care after using the MS-PHR for two years. Besides, a focus group interview was carried out (N = 7) for which the Framework-method was used to study the provided data. Results: The results showed a lower MS-PHR usage and satisfaction than expected. The use of the MS-PHR for two years did not result in higher self-efficacy (p = .667) or higher experienced quality of care (p = .252). Experienced quality of care was a significant predictor of self-efficacy (p = .015). The results of the focus group interview showed a low MS-PHR usage as well. Participants mentioned that the MS-PHR could contribute to self-efficacy via provided health information and to experienced quality of care via shared disease related information with the healthcare professional before consultation. Conclusion: This study showed that the MS-PHR usage was lower than expected. Besides, the MS-PHR did not result in higher self-efficacy or experienced quality of care. A possible explanation might be the multiple barriers that complicated the implementation process. Future research is needed to implement a better version of the MS-PHR, to optimize the implementation process, and to learn how the added value of the MS-PHR for patients with MS can be increased.Show less
