Fear of MS relapse, progression drives anxiety for patients: Study
Researchers say support, coping strategies can help
- Fear of relapse and progression is common in multiple sclerosis patients.
- This fear causes anxiety, depression, fatigue, and lower quality of life.
- Support, education, coping strategies, and screening can help patients manage their fears.
Fear of a sudden relapse or a gradual worsening of MS symptoms is common among people with multiple sclerosis (MS), according to a systematic review analyzing data from more than 3,000 people with MS.
Those fears are not only widespread but also closely tied to poorer mental health, greater fatigue, and reduced quality of life, the data showed.
“Fear of relapse and progression is common and significantly impacts the lives of people with MS,” the researchers wrote. “Future research should focus on evaluating and implementing tailored interventions — including psychological support, educational initiatives, and coping-based strategies — to help patients manage these fears.”
The study, “Fear of disease progression and relapse in multiple sclerosis: a systematic scoping review,” was published in Frontiers in Psychiatry by a team of researchers in Europe, the U.S., and Iran.
Uncertainty leads to fear
MS symptoms include fatigue, mobility and vision problems, cognitive difficulties, and pain that can fluctuate over time. In the progressive forms of the disease — primary progressive MS (PPMS) and secondary progressive MS (SPMS) — symptoms tend to steadily worsen.
Most people are diagnosed with relapsing-remitting MS (RRMS), a form marked by relapses, periods when existing symptoms suddenly worsen or new symptoms appear, followed by periods of remission, when symptoms ease or stabilize.
“Uncertainty about disease prognosis and the severity of future relapses often leads to significant fear of progression … [which] is related to distress, depression, generalized anxiety disorder, and reduced cognitive functioning and adversely impacts quality of life,” the researchers wrote.
Still, fear of disease progression has been studied far less in MS than in other chronic illnesses, such as cancer.
“A systematical investigation of existing evidence offers critical insights into the prevalence, associated factors, and impacts of this fear in individuals with MS,” which may help “inform future tailored interventions for over 2.8 million people living with MS worldwide,” the researchers wrote.
They reviewed all studies published up to October 2024 that examined fear of relapse or fear of disease progression in people diagnosed with MS.
A total of 13 studies, covering 3,058 people with MS, were included in the final analysis. The studies were published between 2017 and 2023 and conducted in countries across Europe, Latin America, and the Middle East. Most of the participants were women (76.9%), ranging in age from 33.18 to 51.5.
Pooled data from four studies using the full- or short-form of the Fear of Progression Questionnaire, which assesses worries about losing independence and coping with ongoing health changes, showed that fear of progression was widespread.
In one study that used the full form of the questionnaire, most MS patients (61.9%) reported at least a moderate level of fear, while nearly one in five (19.6%) reported fear severe enough to affect their daily lives. In the three remaining studies, “a significant proportion of patients expressed concerns about the progression of their disease,” the team wrote.
For 40% of patients, these fears involved needing help with everyday tasks. Participants also voiced concerns about losing hobbies or managing medication side effects.
Nine studies assessed fear of relapse via the Fear of Relapse Scale, which covers fears of disability following a relapse, fears of relapse-related psychological and physical effects, and limitations due to fear.
Pooled data demonstrated that fear of relapse was also common, but its impact varied by region.
Turkish-speaking participants tended to report milder levels of fear, while Iranian patients showed much greater concern, especially about worsening fatigue and the psychological impact of receiving difficult medical news. Spanish-speaking participants fell in between, most often worrying about a relapse’s psychological and physical consequences.
Younger patients, women more likely to fear progression
Overall, younger patients and women had significantly higher levels of fear of disease progression.
Psychological contributors also played a significant role. Interpreting normal bodily sensations as signs of relapse, experiencing greater fatigue, perceiving cognitive difficulties, and having a low tolerance for uncertainty were all significantly linked to an increased fear of relapse.
In contrast, stronger emotional regulation, higher self-efficacy (confidence in one’s ability to manage challenges), and greater social support were linked to lower fear.
Across nearly all studies, greater fear of relapse or progression was associated with worse depression, anxiety, stress, and poorer health-related quality of life. Fear of relapse in RRMS patients was the strongest predictor of reduced quality of life.
“These findings suggest that fear of relapse/progression is not an isolated concern but part of a broader psychological profile,” the team wrote, noting that fear can create a cycle that further worsens mental health. They also found that psychological resilience may slightly buffer some of the negative impacts of relapse fear on quality of life.
The team highlighted potential strategies to help reduce fear. Exercise — “a prime community-based intervention” — may help by lowering fatigue, improving bodily awareness, and promoting social contact, the researchers wrote. Educating patients about “benign bodily sensations” may ease unnecessary anxiety, while “integrating psychological services into MS care” could strengthen stress-management and resilience skills, they said.
Given the frequency and impact of these fears, the researchers called for “proactive clinical interventions,” concluding that clinicians should “routinely screen for fear using validated tools,” allowing for earlier psychological support and targeted treatment.
About the Author
