A Visual Guide to Enhance Patient Understanding of Relapse Terminology

Background: MS patients and providers often have different perceptions and use different terminology to describe multiple sclerosis (MS) relapses, pseudo-relapses, and symptom changes. These discrepancies between patient and provider terminology can interfere with optimum shared decision-making and patient care.¹ Unfortunately, knowledge deficits among MS patients are considered moderately common.^{2, 3}

Patients who do not seek relapse treatment may suffer through a long relapse which impacts occupational and social functioning. In contrast, patients who inappropriately expect intravenous (IV) steroids for mild changes in their baseline MS symptoms expose themselves to risk of adverse effects such as osteoporosis, mood changes, and weight gain, and add financial burden on the healthcare system.  The heterogeneity of MS symptoms in patients exacerbates the difficulty of patient education to differentiate between trivial and concerning symptom changes.

Objectives: Inform and educate patients to increase their confidence in their ability to appropriately seek care, and improve quality of life. Additionally, improvement in cost-effective care is expected.

Methods: Our MS Center team identified the need for improved patient-education material on relapse recognition and when to seek care during discussions with our providers and infusion staff. Qualitative analysis of a sampling of patient questions yielded the realization that patients found a visual guide more understandable than a text-based guide. Accordingly, a novel patient-education guide was researched, designed and completed. This guide utilizes visual metaphor to illustrate differences between the usual symptom variation normally experienced by MS patients, and more concerning symptoms or patterns which should trigger an urgent visit.

Results: We will monitor patient satisfaction with use of the new visual guide. 

Conclusions: MS patients and providers may have different understanding of MS relapses, and thus, of when to seek care or when intravenous steroid treatment is appropriate. We posit that a patient-education guide utilizing visual examples in addition to text will help patient differentiate between normal symptom variation and more concerning symptoms, and improve patient satisfaction.  

References:

1. O’Connell, D. (2004). Is it an MS attack – or not? InsideMS, July-September 2004, p. 58-63.

2. Heesen, C., Kasper, J., Kopke, S, Richter, T., Segal, J, & Muhlhauser, I. (2007). Informed shared decision making in multiple sclerosis – inevitable or impossible? Journal of the Neurological Sciences (259), 109-117.

3. Heesen, C., Kolbeck, J., Gold, S.M., Schulz, H. Schulz, K. (2003). Delivering the diagnosis of MS – results of a survey among patients and neurologists. Acta Neurology Scandinavia (107). 363-368.