Journal of Neuroscience Nursing

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Journal of Neuroscience Nursing:
doi: 10.1097/JNN.0b013e31828a4161
Article: Online Only

The Impact of a Patient Support Program for Multiple Sclerosis on Patient Satisfaction and Subjective Health Status

Kohlmann, Thomas; Wang, Cheng; Lipinski, Jens; Hadker, Nandini; Caffrey, Elizabeth; Epstein, Michael; Sadasivan, Ravi; Gondek, Kathleen

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ABSTRACT: Background: Leading multiple sclerosis (MS) therapies have patient support programs (PSPs) aimed at improving patients’ lives. There is limited knowledge about what drives patient satisfaction with PSPs and little evidence about its impact on patient-reported health status or health-related quality of life. Objective: The aims of this study were to evaluate patient needs and the PSP’s role in meeting those needs; understand the drivers of PSP satisfaction and loyalty; and assess whether a MS PSP provides quantifiable, incremental benefit to patients, as measured by patient-reported health status, health state utility, and/or health-related quality of life. Methods: An Internet survey was conducted among 1,123 adult German MS patients currently enrolled in Bayer’s German BETAPLUS PSP. Health status, health state utility, and health-related quality of life were measured using the EQ-5D Visual Analog Scale, the EQ-5D Index, and Short Form-12 Health Survey, respectively. Results: MS patient needs vary by disease severity, duration of disease, and gender. Patients with greater self-reported needs and lower health status, health state utility, and health-related quality of life value and use the PSP more than other patients. Drivers of PSP satisfaction include use of patient hotline, nurse telephone calls, and mail education. Patients estimate that their health status would be 15 points lower if the PSP ceased to exist (translating to 0.15 on the time trade-off utility scale). This impact is significant, as it is nearly two times the minimally important difference. Conclusions: MS patients place inherent value on PSPs. From a patient’s viewpoint, PSPs provide real incremental benefit in patient-reported health status at all stages of MS.

© 2013 American Association of Neuroscience Nurses


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