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Specific factors place newly diagnosed patients with multiple sclerosis (MS) at risk for worse mental and physical health-related quality of life (HRQoL) over the course of their disease, new research suggests.
In a study of almost 5000 participants with MS, results showed that being older or having worse physical impairment or fatigue at diagnosis was significantly associated with poor physical HRQoL, while having an income of less than $50,000 and no post-secondary education were linked to worse mental QoL.
Although some of these risk factors were known previously, the current findings tie them, when present at diagnosis, to poorer outcomes decades down the road, raloxifene hcl nmr investigators note.
The study, which is one of only a few to examine long-term outcomes on the basis of conditions present at diagnosis, grouped patients according to quality-of-life trajectories.
Dr Julia O’Mahony
“Teasing apart that there are different trajectories and that people have different pathways and what those pathways look like is extremely important to patients ― as well as knowing what they can do to improve their outcomes or their chances being on a good trajectory,” lead author Julia O’Mahony, PhD, a postdoctoral fellow at the University of Manitoba, Winnipeg, Canada, told Medscape Medical News.
The findings were published online August 10 in Neurology.
Researchers analyzed data on 4888 participants (81% women) who enrolled in the North American Research Committee on Multiple Sclerosis registry within 3 years of their MS diagnosis. The self-report registry was established in 1996 to collect demographic and clinical information from patients with MS.
Each participant was assessed at least three times and completed an average of 12 HRQoL questionnaires from 1 to 27 years after diagnosis.
Investigators used a novel technique called group-based trajectory modeling to identify clusters of individuals who had similar patterns of physical and mental HRQoL trajectories in the decades after their diagnosis.
Of the five physical HRQoL trajectories identified,
26.4% of participants reported consistently low and stable physical HRQoL;
29.2% reported moderately low and stable physical HRQoL;
13.4% reported moderate to low physical HRQoL within the first 10 years after diagnosis, followed by normal physical HRQoL thereafter;
17.1% experienced an early decline in physical HRQoL within the first 8 years after diagnosis and then an increase to moderate/normal HRQoL thereafter; and
13.9% reported persistently normal physical HRQoL for the first 20 years after diagnosis and then a decline.
Older age at diagnosis and worse physical impairments and fatigue were associated with increased odds of reporting the lowest physical HRQoL compared with all other trajectories.
For participants with the lowest HRQoL, the average age at MS diagnosis was 46 years, vs an average age of 38 years for those who reported the highest HRQoL.
Members of the group with the lowest quality of life had moderate to severe fatigue and moderate disability, including problems with their gait and mobility or needing a cane early on. Those in the group with the best quality of life had minimal fatigue and normal functioning or mild disability.
Mental Health Outcomes
The researchers also identified four mental HRQoL trajectories. Among the participants,
18.6% had long-term low mental HRQoL;
32.9% reported moderately low and stable mental HRQoL;
22.2% had moderately low mental HRQoL within the first 10 years after diagnosis, followed by reports of normal mental HRQoL thereafter; and
26.4% reported long-term normal mental HRQoL.
Patients with an annual income of $50,000 or less and no post-secondary education at time of MS diagnosis were more likely to report the lowest mental HRQoL.
Interestingly, while older age at diagnosis was predictive of worse physical HRQoL, it was associated with better mental HRQoL.
“Sometimes people might actually have other physical impairments because they are older, but they might have more life experience and know that life sometimes throws us curve balls and might be better equipped with stable jobs, housing, relationships, and family life ― and might be able to better cope with the diagnosis,” O’Mahony said.
Overall, 8% of participants fell into the worst physical and mental QoL groups, and 8% were in the best groups. The remaining 84% of patients fell somewhere along the spectrum, with physical and mental health usually not in alignment.
“Identifying that people who have great physical quality of life might actually have poor mental quality of life was what we were trying to highlight there so that people, clinicians in particular, know to screen [patients] for both mental and physical quality of life ― and that they may not actually mirror one another,” O’Mahony said.
Commenting for Medscape Medical News, Pavan Bhargava, MD, associate professor of neurology at Johns Hopkins University, Baltimore, Maryland, noted that while the study’s methodology was interesting, the risk factors identified were already known.
“While interesting, it is not clear that these findings will impact clinical treatment or management of MS since they do not really provide new data and the factors identified here are largely not readily modifiable,” said Bhargava, who was not involved with the research.
“We as clinicians cannot change age of disease onset, extent of physical impairments, or factors such as educational attainment or income,” he added.
While O’Mahony agrees with Bhargava that the factors that were isolated in the study are not new, she disagrees that the findings are of little clinical value.
“We uniquely showed that these factors, as ascertained solely at diagnosis, can predict long-term quality-of-life outcomes, over as long as 20 years,” O’Mahony noted.
“This is a novel observation that gives physicians the ability to identify people at high risk for poor outcomes at the beginning of their care pathway, and aim for early interventions to change those trajectories,” she said.
The study was funded by the Consortium of Multiple Sclerosis Centers (CMSC). O’Mahony has received research funding from the Multiple Sclerosis Society of Canada, the Multiple Sclerosis Scientific Foundation, and the CMSC. Bhargava has disclosed no relevant financial relationships.
Neurology. Published online August 10, 2022. Abstract
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