Abstract
Background Magnetic resonance imaging (MRI) is a key diagnostic and monitoring tool in multiple sclerosis (MS) management. However, many scientific uncertainties, especially concerning correlates to impairment and prognosis remain. Little is known about MS patients' experiences, knowledge, attitudes, and unmet information needs concerning MRI. Methods We performed qualitative interviews (n = 5) and a survey (n = 104) with MS patients regarding MRI patient information, and basic MRI knowledge. Based on these findings an interactive training program of 2 hours was developed and piloted in n = 26 patients. Results Interview analyses showed that patients often feel lost in the MRI scanner and left alone with MRI results and images while 90% of patients in the survey expressed a high interest in MRI education. Knowledge on MRI issues was fair with some important knowledge gaps. Major information interests were relevance of lesions as well as the prognostic and diagnostic value of MRI results. The education program was highly appreciated and resulted in a substantial knowledge increase. Patients reported that, based on the program, they felt more competent to engage in encounters with their physicians. Conclusion This work strongly supports the further development of an evidence-based MRI education program for MS patients to enhance participation in health-care.
Highlights
People with multiple sclerosis (MS) give information about magnetic resonance imaging (MRI) and about its relevance for diagnosis and prognosis highest priority [1]
MRI is of crucial relevance in diagnosing and managing MS
This study shows the vulnerable emotional situation especially of patients having their first MRI scan performed
Summary
People with multiple sclerosis (MS) give information about magnetic resonance imaging (MRI) and about its relevance for diagnosis and prognosis highest priority [1]. Based on MRI, MS can be diagnosed after a single clinical event [2] which means a very early confrontation of patients with a non curable possibly sub-clinical chronic disease. Metaanalytic work from n5223 patients in 31 placebo cohorts of MS treatment trials has for example shown that T2 lesion load and Gadolineum enhancement has no independent prognostic value for disability [7]. Methods: We performed qualitative interviews (n55) and a survey (n5104) with MS patients regarding MRI patient information, and basic MRI knowledge Based on these findings an interactive training program of 2 hours was developed and piloted in n526 patients. Conclusion: This work strongly supports the further development of an evidencebased MRI education program for MS patients to enhance participation in health-care
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