A Visual Guide to Enhance Patient Understanding of Relapse

Background: 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. Unfortunately, knowledge deficits about relapse characteristics are not uncommon among people living with MS.

The heterogeneity of MS symptoms in patients exacerbates the difficulty of patient education to differentiate between trivial and concerning symptom changes. This is especially important when screening and monitoring of patients on DMTs with risk of progressive multifocal leukencephalopathy (PML).

Patients may have insufficient understanding of when it is appropriate to seek care for an MS relapse, and thus experience a long relapse which severely impacts function. In contrast, other patients may request intravenous (IV) steroids for mild changes in their baseline symptoms, and risk adverse effects such as osteoporosis, mood changes, or weight gain, and add financial burden on the healthcare system, without benefit to health.

There is need for a concise and readily understandable patient education guide on relapses.

Objectives: Our goals are to promote increased patient understanding of relapses and when to seek care, increase patient safety and quality of life, and improve cost efficiencies.

Methods: Our MS Center nurses identified the need for a concise patient-education tool on relapse recognition, and when to seek care. Qualitative analysis of a sampling of patient questions indicated that patients found a visual guide more understandable than a text-based guide. Accordingly, a novel patient-education guide was designed which utilizes visual metaphor and line illustrations to illustrate differences between the usual symptom variation normally experienced by MS patients, and concerning symptoms or severity which should trigger a call or urgent visit.

Our nurses will use this patient-education guide for three consecutive months in our outpatient clinic. Nurses will use the Teach-Back method to evaluate how helpful the Guide has been to patients.

Sample scripts: 

“Please tell me, in your own words, what having a relapse means to you.”
“How long would your symptoms last for you to call it a relapse?”

Results: This is a pilot program over the first quarter of 2017; results will be analyzed and ready for presentation at the May 24-27 CMSC Annual Meeting.

Conclusions: We expect that increased patient education will improve patient and provider satisfaction and patient quality of life. Additionally, improvement in patient safety and cost-effective care is expected.