Magnetic Resonance Imaging in Multiple Sclerosis – Patients' Experiences, Information Interests and Responses to an Education Programme

<div><p><i>Background</i></p><p>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.</p><p><i>Methods</i></p><p>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.</p><p><i>Results</i></p><p>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.</p><p><i>Conclusion</i></p><p>This work strongly supports the further development of an evidence-based MRI education program for MS patients to enhance participation in health-care.</p></div

Additional file 1: of Comprehension of confidence intervals - development and piloting of patient information materials for people with multiple sclerosis: qualitative study and pilot randomised controlled trial

Coding tree. (DOC 30 kb

Personal goals concerning MRI education (n = 99) (multiple answers possible).

<p>Personal goals concerning MRI education (n = 99) (multiple answers possible).</p

Risk knowledge in relapsing multiple sclerosis (RIKNO 1.0) - Development of an outcome instrument for educational interventions

Background Adequate risk knowledge of patients is a prerequisite for shared decision making but few attempts have been made to develop assessment tools. Multiple Sclerosis (MS) is a chronic inflammatory disease of young adults with an increasing number of partially effective immunotherapies and therefore a paradigmatic disease to study patient involvement. Objective/methods Based on an item bank of MS risk knowledge items and patient feedback including perceived relevance we developed a risk knowledge questionnaire for relapsing remitting (RR) MS (RIKNO 1.0) which was a primary outcome measure in a patient education trial (192 early RRMS patients). Results Fourteen of the RIKNO 1.0 multiple-choice items were selected based on patient perceived relevance and item difficulty indices, and five on expert opinion. Mean item difficulty was 0.58, ranging from 0.14 to 0.79. Mean RIKNO 1.0 score increased after the educational intervention from 10.6 to 12.4 (p = 0.0003). Selected items were particularly difficult (e.g. those on absolute risk reductions of having a second relapse) and were answered correctly in only 30% of the patients, even after the intervention. Conclusion Despite its high difficulty, RIKNO 1.0 is a responsive instrument to assess risk knowledge in RRMS patients participating in educational interventions

Demographic data of survey on MRI experiences.

<p>Values are numbers (%) if not indicated differently.</p><p>* 12 or more years of school,</p><p>** Range 0–10 with higher values indicating good knowledge.</p><p>*** Objective MRI knowledge (range 0–17 with higher values indicating good knowledge).</p><p>Demographic data of survey on MRI experiences.</p

Interview and focus group findings.

<p>Interview and focus group findings.</p