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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

Journal of Neuroscience Nursing: June 2013 - Volume 45 - Issue 3 - p E3–E14
doi: 10.1097/JNN.0b013e31828a4161
Article: Online Only

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.

Thomas Kohlmann, PhD, is Professor at the Institute for Community Medicine, University of Greifswald, Greifswald, Germany.

Cheng Wang, MD PhD, is Deputy Director at the Bayer Healthcare Pharmaceuticals, Montville, NJ.

Jens Lipinski, MD, is Senior Market Access Manager at the Bayer Healthcare Pharmaceuticals, Leverkusen, Germany.

Nandini Hadker, MS, is Managing Director, Commercial Strategy & Reimbursement, United BioSource Corporation, Lexington, MA.

Elizabeth Caffrey, MS, is Senior Project Manager, Commercial Strategy & Reimbursement, United BioSource Corporation, Lexington, MA.

Questions or comments about this article may be directed to Michael Epstein, MS, at michael.epstein@unitedbiosource.com. He is a Director of the Commercial Strategy & Reimbursement, United BioSource Corporation, Lexington, MA.

Ravi Sadasivan, MS, is Project Manager of Commercial Strategy & Reimbursement at the United BioSource Corporation, Lexington, MA.

Kathleen Gondek, PhD MS BS AAS, is Vice President of Medical Science Liaisons and Medical Affairs at the Bayer Healthcare Pharmaceuticals, Wayne, NJ.

Disclosures: Thomas Kohlmann served as a paid consultant for his time and contribution to study design, implementation, and evaluation. Cheng Wang, Jens Lipinski, and Kathleen Gondek are full-time employees of Bayer. Nandini Hadker, Elizabeth Shaw Caffrey, Michael Epstein, and Ravi Sadasivan are full-time employees of United BioSource Corporation, which was a paid consultant to Bayer during the study and development of this manuscript.

The authors declare no conflicts of interest.

© 2013 American Association of Neuroscience Nurses