MRI Education May Benefit MSers
People with MS often feel anxious about MRIs and frequently lack basic knowledge of this diagnostic procedure. Is an education program that creates “expert patients” the answer?
Persons with multiple sclerosis (MS) often feel stressed while in the magnetic resonance imaging (MRI) scanner and then feel in the dark regarding MRI findings, according to a survey reported online November 21 in PLOS ONE (Brand et al., 2014). Results of this study support the need for an evidence-based MRI education program, say the study authors.
“[MRI] is a key diagnostic and monitoring tool in [MS] management,” wrote Judith Brand, Institute of Neuroimmunology and Clinical MS Research and Department of Neurology, UMC Hamburg Eppendorf in Germany, and colleagues. “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.”
The investigators conducted five qualitative interviews and a survey of 104 persons with MS to determine their experiences with MRI and their level of basic MRI knowledge. These data allowed the investigators to develop a 2-hour interactive training program, which they tested in 26 participants.
Knowledge gaps
Based on analysis of the interview data, participants often described feeling lost in the MRI scanner and lacking counseling regarding their MRI findings. Interviewees described substantial fear about MRI findings, even though the survey showed that most patients knew that lesions are not strongly correlated with disability or with prognosis.
On average, participants answered 10 of 17 knowledge questions correctly, but only about half knew about radiation exposure and about one-quarter knew about applicability of contrast agents. Despite only fair knowledge of MRI issues and some important knowledge gaps, 90% of survey participants stated that they were very interested in MRI education.
More than half of the participants thought that MRI education would help them communicate with their physician, but less than 7% thought it would reduce their anxiety about MRI results.
They especially wanted to know the clinical relevance of their lesions and the role of MRI in prognosis and diagnosis. However, interviews suggested that this education should not be provided too close to the diagnostic disclosure.
Educational intervention effective
The educational intervention consisted of a slide presentation and opportunities for discussion. The content included principles of MRI technique, risks and contraindications of MRI imaging, gadolinium use, typical MS lesions, diagnostic MRI criteria, CNS anatomy, and the use of MRI to measure treatment response and predict disability.
Participants greatly valued the education program, which was associated with a marked improvement in knowledge. They felt that the program enhanced their ability to interact with their physicians. Even after an educational session as short as 90 minutes, 69% of participants felt that they would thenceforth attempt to evaluate their own images.
“Eventually, participants tend to be skeptical towards results and interpretations of physicians, potentially causing distrust,” the study authors wrote. “This may indicate the need for further discussions about the challenging aspects of ‘expert patients.’ ”
Study limitations include low response rate, lack of data on education level, and use of a university outpatient cohort, which might be biased toward higher educated, more interested patients. The investigators did not compare views on MRI of men and women.
“Physicians need to be aware that a relevant amount of patients would even be happy to be able to read their own images to some extent,” the study authors concluded. “As patients’ needs might substantially differ within the diagnostic process and the later disease course, these differences need to be studied in further work. … Our data indicate that [educating persons with MS regarding MRI] might not only lead to more participation and empowerment, but also to a more rational use of health-care resources.”
Key open questions
- How does the process of giving information on and patient knowledge of MRI findings differ among healthcare settings and countries, and how can MRI education programs best be tailored to these different settings?
- What would a controlled trial reveal regarding the potential added value of an MRI education program to standard care, as well as possible adverse effects?
- What are the dangers, if any, of creating “expert patients”?
Disclosures and sources of funding
The German Ministry of Education and Research funded this study within the German MS competence network project “Decision coaching on immunotherapy in MS.” www.bmbf.de/en/. The study authors reported having no financial disclosures.
Comments
This interesting study polled German MS patients about their knowledge, comfort level, and educational preferences related to the use of MRI in MS. The investigators built upon these patient responses to design a patient-oriented educational program to demystify MRI and empower patients to become shared decision-makers in MRI ordering and interpretation. Some of the patient concerns in this analysis may be particular to the specifics of local healthcare systems—for example, the patients surveyed in this study typically left the MRI facility with a printed report of the final read from the radiologist and a CD of their images to bring back to their neurologist. In some other healthcare systems, the final MRI report from radiology is relayed to patients and interpreted in clinical context by their treating MS specialist. Nonetheless, this study begins to provide hard data about patient preferences and highlight opportunities for improving the patient experience of one of the most commonly ordered diagnostic tests in MS care.
Despite being one of those possibly dangerous 'expert patients' I still come home with that CD in hand after my scans are done, pop it into my computer and then puzzle over what I am seeing. Not only would I welcome a course like this, I have no doubt it would be useful to the patient community. We are independently looking at our images anyway, at least here in the US, and providing us with the tools to better understand what we are looking at can only make our conversations with our neurologists more beneficial to patient education.