Study Highlights Need for Better Engagement Between MS Patients and Healthcare Providers

Multiple sclerosis (MS) relapses can be challenging for some patients, and better engagement is needed between patients and their healthcare providers, a study focused on patient experiences has found.

The study, titled “Relapse prevalence, symptoms, and health care engagement: patient insights from the Multiple Sclerosis in America 2017 survey,” offers insight into the relapse prevalence, symptoms, and engagement with healthcare professionals from patients with MS who responded to the Multiple Sclerosis in America (MSIA) 2017 survey. It was published in the journal Multiple Sclerosis and Related Disorders.

The perspectives of patients have become increasingly important in research because they help to identify important factors from their own personal health experiences, which are often missed in more restrictive clinical studies.

To gain further insight into MS patient perspectives, researchers assessed data from the MSIA 2017 survey, which gathered information about disease symptoms, relapse frequency, and patients’ healthcare-seeking behavior.

The survey involved 5,311 MS patients (mean age of 51.2 years; 84.3% female; 89.3% Caucasian) across the United States.

A total of 72.2% of the patients were diagnosed with relapsing-remitting MS (RRMS), 12.1% with secondary progressive MS (SPMS), and 9.3% with primary progressive MS (PPMS), while 6.5% did not know or could not recall the type of MS diagnosed. Of the patients not reporting a diagnosis of PPMS ( 4,819 patients), 74.8% were being treated with disease-modifying therapies.

Results showed that in the two years preceding the survey, 73.1% of the patients experienced at least one relapse. Overall, the relapse frequency per year was: 44.1% patients had less than one relapse, 35.5% had one to two relapses, and 20.2% had  more than two relapses.

In patients reporting relapses, 62.5% cited an average relapse duration of  less than one month, 10.9% cited one to two months, and 13.6% cited more than  two months. And 12.9% were unsure or didn’t recall.

The main symptoms experienced during relapse were fatigue (77.4%), numbness/tingling (70%), and balance or walking issues (68.8%).

With respect to seeking help from healthcare professionals during a relapse, 46.9% of patients reported doing so always/often, 27.3% reported doing it sometimes, 18.5% rarely, and 7.3% reported never.

The most common reasons patients mentioned for not seeking professional medical care were that the relapse was not severe enough (57.9% of the patients), the healthcare provider was unhelpful or did not tell the patient to contact them (30.9%), the treatment was either not effective or not well-tolerated (25.6%), or the patients preferred to deal with it alone (24.4%).

A higher percentage of patients with one relapse consulted a medical provider during relapse, while patients with five or more relapses were the ones with the lowest engagement with a healthcare professional. The survey also revealed that patients who engaged more with healthcare professionals during relapses were better informed about issues related to relapses and MS in general than those who sought out medical help less frequently.

After relapse, follow-up with healthcare providers was found to be variable, with 35% of patients being followed up within one month, 50.3% with a follow-up at the next medical visit, and 14.7% reporting no follow-up. A timely follow-up was found to be associated with greater patient satisfaction with the MS care provider and the treatment plan, the researchers noted.

Based on the results of the survey, the team reported that “MS relapse remains particularly challenging for certain patients.” Furthermore, “approximately 25% of patients reported rarely or never engaging their HCP [healthcare provider] during relapse,” they wrote, an issue “that warrants further exploration.”

According to the team, to improve “patient-HCP MS care partnership and patient outcomes, clear parameters driving engagement during relapse and during follow-up after relapse should be identified and prioritized.” They also believe that “the voice of the patient should serve as a critical component and driver of research.”