Barry A Singer,1 Shannon Keith,2 Amy Howerter,3 Helen Doll,3 Timothy Pham,4 Rina Mehta4
1The MS Center for Innovations in Care, Missouri, Baptist Medical Center, St. Louis, MO, USA; 2Clinical Outcomes Assessment,Clinical Outcomes Solutions, Chicago, IL, USA; 3Quantitative Science,Clinical Outcomes Solutions, Tucson, AZ, USA; 4US HEOR, Bristol Myers Squibb, Princeton, NJ, USACorrespondence: Shannon KeithClinical Outcome Assessments, Clinical Outcomes Solutions, 53 W Jackson Blvd, Suite 1150, Chicago, IL, 60604, USA Tel +1 312 465 2443Email shannon.keith@clinoutsolutions.comBackground: Clinicians treating multiple sclerosis (MS) should consider patient preferences when making treatment decisions. An online mixed-methods approach to elicit patient-centered concepts, group concept mapping (GCM), was used to generate statements reflecting the patient experience in relapsing-remitting MS and identify the most important patient-centered outcomes from patient and clinician perspectives.Patients and Methods: Twenty patients and 12 MS specialists in the United States provided statements describing what an ideal treatment would do to improve symptoms and daily functioning. Statements were sorted by participants into meaningful domains and rated on importance on an 11-point scale.Results: Sixty-four unique statements supporting 6 domains of clustered concepts were generated. Patient and clinician ratings of importance were highly correlated (r=0.82); however, patients rated the domains of Activities of Daily Living, Prevent & Cure, and Address Symptoms as highest in importance, whereas clinicians rated Prevent & Cure, Safe & Effective, and Activities of Daily Living as highest in importance. Statements rated above the domain mean by both patients and clinicians included “Improve cognitive function” and “Improve motor function” in the Activities of Daily Living domain and “Help with memory issues” and “Help preserve cognition” in the Address Symptoms domain. The statement “Improve short term memory” was 1 of 3 statements rated above the domain mean by patients but below the domain mean by clinicians.Conclusion: High levels of agreement of concept importance were found between patients and MS specialists, although certain domains and statements were rated more highly by one group. Overall, concepts such as cognitive function, physical and emotional functioning, and activities of daily living were perceived as having great importance for treatment outcomes versus symptom-focused outcomes like gait or tingling sensations. This comprehensive concept model for the MS patient experience can be used for further development of patient-centered outcome measures in MS treatment.
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