After 2 relapses, patients start to overestimate their future risk: Study

But those with only 1 relapse tend to underestimate this risk, small study says

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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People with neuromyelitis optica spectrum disorder (NMOSD) who have experienced only one relapse tend to underestimate their risk of future relapses, but patients who’ve had multiple relapses tend to overestimate this risk, a small study has found.

The findings underscore the importance of clear communication with healthcare providers so that patients can accurately understand their risk, researchers said.

That’s according to a study, “Characteristics of recurrence risk perception and coping strategies in patients with neuromyelitis optica spectrum disorder: A qualitative study,” which was published in Multiple Sclerosis and Related Disorders.

NMOSD is characterized by relapses or flares where symptoms suddenly worsen, often leading to long-lasting disability. A team of researchers in China conducted interviews with 15 people diagnosed with NMOSD to better understand their attitudes toward relapses and relapse prevention.

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Negative impact of relapses on physical, emotional, and social wellness

The interviewed patients emphasized the negative impact that relapses can have, causing not only physical problems but also emotional and social struggles like anxiety, and complicating relationships with family and friends.

“After several relapses, I can’t see clearly, and then when I can’t walk, it’s really inconvenient,” one patient said. “For example, when I want to defecate and urinate, my family has to use a bedpan to help me.”

A second patient said, “I can’t walk for too long, so I have to choose not to attend most gatherings,” while another remarked, “When I can’t walk or turn over, I feel so dejected and helpless.”

Some patients reported they usually experience early warning signs when a relapse is imminent.

“I may experience symptoms such as numbness in the hands and feet, headaches, or vision loss. When I experience these I know it could be a relapse as I’ve experienced those symptoms before,” one patient said.

For others, relapses can occur suddenly or with unexpected symptoms that aren’t immediately recognizable as NMOSD. For example, one patient recounted a relapse that began as an earache, saying, “I thought it was an ear problem, so I went to the ear department. Who could have known it was a relapse?”

When I can’t walk or turn over, I feel so dejected and helpless.

Some patients can identify triggers that could set relapse in motion

Some patients said they had identified triggers that could set a relapse in motion. In particular, several patients recounted not taking their medications as directed and then experiencing a relapse soon after,  which the researchers said highlights the importance of appropriate treatment for people with NMOSD.

However, several patients blamed relapses on things like cleaning or being tired from traveling. These activities are unlikely to serve as true NMOSD triggers, the researchers wrote, so this finding suggests some patients have misconceptions about relapse triggers.

The interviews also revealed an unexpected pattern in the patients’ perception about their risk of future relapses. Patients who had experienced only one NMOSD relapse tended to report feeling their risk of additional relapses was quite low, whereas patients who’d had multiple relapses tended to say they were at high risk for future relapses. In other words, patients went from underestimating their relapse risk to overestimating it as they experienced more relapses.

“Respondents who experienced recurrent episodes, tended to shift from their previous underestimation to overestimating,” the researchers wrote.

This finding highlights the importance of healthcare providers clearly communicating about relapse risk to their patients, the team noted, since underestimating risk can make patients less likely to get appropriate care, but overestimating risk can lead to undo stress and anxiety.

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Patients eager to discuss treatment, relapse management with their doctors

“Patients are eager to communicate with their healthcare providers regarding treatment planning and relapse management,” the researchers wrote.

The patients themselves also emphasized the importance of clear communication. Several expressed frustration about not getting clear information from their healthcare team.

“I don’t know anything, so I’ll ask the doctor. I really want to listen to the doctor’s advice, and learn how to be more attentive and cautious so I do not easily relapse. However, I asked them and they said there was nothing to notice,” one patient said.

The researchers stressed this study was based on interviews with a small group of patients at one center, so these findings may not be applicable to the wider NMOSD population, and more work will be needed to verify the results.