CREATION OF A WEB-BASED MULTIPLE SCLEROSIS PATIENT-REPORTED OUTCOMES RESEARCH PROGRAM

Author(s)

Deering K1, Agarwal SS2, Rajagopalan K2, Harshaw Q1, Shillington AC11EPI-Q, Inc., Oak Brook, IL, USA, 2Biogen Idec, Wellesley, MA, USA

OBJECTIVES: To create and implement a secure web-based research program that collects and tracks validated patient-reported outcomes (PROs) for multiple sclerosis (MS) patients and their healthcare providers (HCP). METHODS: The My MS Health program can be accessed through a HIPAA secure website, www.mymshealth.org. A pilot study to evaluate the My MS Health program has been IRB-approved. Assessment of inclusion/exclusion criteria, enrollment, and informed consent with an electronic signature occurs through this secure website. Enrolled patients are prompted to complete a series of nine validated PRO surveys that measure MS specific symptom status, functional status, and quality-of-life, and results are immediately available. Patients may elect to give their HCP access to their real-time PRO results electronically. Aggregate data analysis can also be performed on the collected PRO data. RESULTS:  In this ongoing study, 927 patients were enrolled and 122 were eligible to participate in the program evaluation survey at three months. Scores were measured on 5-point Likert scales with a range of low agreement (1) to high agreement (5) and scores greater than or equal to 3 signify agreement. Overall, 93% felt the amount of time it took to answer the surveys was just right, and 91% felt the website was easy to use (4.5+1.05). In addition, 92% reported they would likely continue participating in the program (4.08+1.11) and 78% reported they would likely recommend My MS Health to others (3.85+1.48). CONCLUSIONS: Preliminary results indicate My MS Health is an efficient and user friendly technology platform that patients will continue to use. Future evaluations will assess the impact of using the program on patient and HCP communication.

Conference/Value in Health Info

2011-05, ISPOR 2011, Baltimore, MD, USA

Value in Health, Vol. 14, No. 3 (May 2011)

Code

PND35

Topic

Patient-Centered Research

Topic Subcategory

Stated Preference & Patient Satisfaction

Disease

Neurological Disorders

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