Summary: During the first year after being diagnosed with multiple sclerosis, 60% of patients experience fatigue, 50% experience pain, 47% show symptoms of depression, and 39% report increased anxiety. Researchers say life-saving, non-pharmaceutical therapies should be provided to newly diagnosed MS patients to help reduce both pain and mental health symptoms.
Source: University of Washington
Two recently published studies by researchers at UW Medicine indicate that clinicians should offer non-pharmaceutical help for pain, fatigue, depression, or anxiety at the time of diagnosis for patients with multiple sclerosis, rather than expect.
The first study, published in the April 2022 edition of Multiple Sclerosis Journal, noted that clinically significant levels of pain, fatigue and depression, as well as anxiety, were commonly seen in newly diagnosed patients. The results also indicated that rapid screening was necessary if quality of life was to be maintained and optimized.
“The ride home was that we found these symptoms, pain, fatigue, depression and anxiety quite prevalent” at the time of diagnosis, said Kevin Alschuler, principal investigator of this National MS Society-funded research study. Alschuler directs the psychology department at UW Medicine’s Multiple Sclerosis Center.
The study found that 60% of patients suffered from fatigue; 50% experienced pain and 47% suffered from depression, of which 39% experienced anxiety in the first year after diagnosis.
“We want to fix this immediately, rather than 5 or 10 years later,” he said.
According to the National Multiple Sclerosis Society, more than one million people live with MS in the United States. A majority live in cooler climates, such as the Northwest. The disease, for which there is no known cure or exact cause, works by triggering the body’s immune system to attack the brain and spinal cord.
The resulting damage to myelin – the protective layer around nerve fibers – disrupts signals to and from the brain. The result is numbness, memory problems, pain, fatigue or even paralysis.
This study, together with a companion study published in the May print edition of the Journal of Neurology, followed the same cohort of patients — largely white and female — through the first year after their diagnosis. In total, the studies followed 230 patients.
Patients were recruited from the UW Medicine Multiple Sclerosis Center and the Swedish Neuroscience Institute MS Center between 2014 and 2018.
The second study focused on the quality of life of patients immediately after, at two months, three months, six months, nine months and then one year after diagnosis. The study results showed that, on average, quality of life was largely stable throughout the year, a finding that surprised the researchers.
“Newly diagnosed patients have to deal with the emotional impact of the diagnosis, as well as numerous tests and treatment decision-making,” noted Alschuler, who was the study’s lead author.
“The results showed that on average, if they arrived and were doing well at diagnosis, they tended to stay that way throughout the first year,” Alschuler said. “If they were in trouble, they also tended to stay that way.”
Both Alschuler and his colleague Dawn Ehde are interested in early non-pharmaceutical interventions for common symptoms of MS patients. Ehde is a clinical psychologist and Nancy and Buster Alvord Endowed Professorship in MS Research in the Department of Rehabilitation Medicine at the UW School of Medicine.
Many times patients had been dealing with the symptoms years before a formal diagnosis, both noted.
“Through symptom self-management, including cognitive behavioral therapy, we help patients develop coping skills, particularly in the areas of fatigue and pain,” said co-author Ehde. of the quality of life study published this month.
With Alschuler, she has published studies demonstrating the effectiveness of such interventions in people with MS for years. Ehde was also a lead author of the April study. who examined the trajectory of symptoms one year after an MS diagnosis.
“We teach them to use strategies like relaxation techniques or mindfulness meditation, as well as pace themselves to reduce fatigue and better manage stress,” she said. “Patients who learn these skills often find that not only is their pain and fatigue reduced, but they are able to do more of what is important to them despite their MS.
The next step for the team is to explore options for early interventions to help newly diagnosed patients. Along these lines, Alschuler worked with his colleague Ivan Molton, another clinical psychologist, to develop an intervention to help newly diagnosed patients deal with the uncertainty that is central to living with MS.
Their 2019 pilot study examined the impact of promoting uncertainty tolerance on improving quality of life and reducing anxiety. They followed that up with a larger clinical trial that recently completed data collection, Alschuler said. The results of this study are expected later this year.
About this multiple sclerosis research news
Author: Press office
Source: University of Washington
Contact: Press Office – University of Washington
Image: Image is in public domain
Original research: Access closed.
“Prevalence, co-occurrence, and trajectories of pain, fatigue, depression, and anxiety within one year of multiple sclerosis diagnosis” by Thomas R Valentine et al. Multiple Sclerosis Journal
Access closed.
“Quality of life of people newly diagnosed with multiple sclerosis or a clinically isolated syndrome” by Kevin N. Alschuler et al. Journal of Neurology
Summary
Prevalence, co-occurrence, and trajectories of pain, fatigue, depression, and anxiety within one year of multiple sclerosis diagnosis
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Background:
Pain, fatigue, depression, and anxiety are common in multiple sclerosis, but little is known about the presence, co-occurrence, and trajectories of these symptoms in the year following an MS diagnosis ( SEP).
Goals:
To determine, within one year of diagnosis: (1) rates of pain, fatigue, depression, and anxiety; (2) symptom co-occurrence rates; and (3) stability/change in symptom severity.
Methods :
Newly diagnosed adults with MS/clinically isolated syndrome (NOT = 230) completed self-report measures of pain, fatigue, depression, and anxiety at 1, 2, 3, 6, 9, and 12 months after MS diagnosis. Clinical significance was defined based on standardized thresholds. Descriptive statistics and Sankey diagrams characterize rates and trajectories.
Results:
Participants endorsed clinically significant symptoms at some point in the year following diagnosis at rates of 50.9% for pain, 62.6% for fatigue, 47.4% for depression, and 38.7 % for anxiety. The majority of patients had concurrent symptoms: 21.3% with two, 19.1% with three, and 17.4% with four. The proportions of patients with clinically significant symptoms were generally stable over time; however, rates of symptom development/recovery revealed fluctuations at the individual level.
Conclusion :
Pain, fatigue, depression and anxiety are common in newly diagnosed people. Prompt screening and evidence-based interventions are needed to optimize quality of life.
Summary
Quality of life of people newly diagnosed with multiple sclerosis or a clinically isolated syndrome
Background
Little is known about quality of life (QOL) at the time of diagnosis of multiple sclerosis (MS) or clinically isolated syndrome (CIS) and its course during the critical adaptation period immediately following a new diagnostic.
Goals
(1) describe the trajectory of quality of life during the first year after MS/IBS diagnosis and (2) examine associations of demographic and biopsychosocial factors with quality of life at baseline and as it progresses within the first year following the diagnosis of MS/IBS.
Methods
The attendees were NOT= 250 people newly diagnosed with MS or IBS. Participants completed self-report assessments of quality of life, demographics, and biopsychosocial factors at 1, 2, 3, 6, 9, and 12 months after diagnosis using validated measures.
Results
At 1 month post-diagnosis, QOL M= 75.2/100 with subsequent ratings revealing consistent ratings on average. Modeling revealed a small number of predictors of quality of life at baseline and/or changes in quality of life over time.
Conclusion
Quality of life during the first year after MS/CIS diagnosis was, on average, high and stable. A subset of modifiable factors across the biopsychosocial spectrum were associated with baseline level of quality of life and change in quality of life over time. The stability of quality of life suggests that patients can be assessed early after diagnosis for key variables that are predictive of current and future quality of life.
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