More must be done to address factors that impact on the quality of life of people living with Multiple Sclerosis (MS), with new research highlighting crucial aspects that could be addressed.
There are specific mental, physical and socio-economic factors that may impact on a person’s happiness, health and enjoyment of life, new research finds.
And the team hope its study findings will lead to early interventions in healthcare to support those with MS to achieve the best possible quality of life.
“There are early risk factors for those who will end up in the groups with the worst health-related quality of life that are easily identifiable by doctors and other health professionals,” said Dr Julia O’Mahony, of the Health Sciences Centre Winnipeg in Winnipeg, Canada.
“For example, socioeconomic factors such as less education and income can be easily identified. This could provide an opportunity for early interventions that could help people with MS live better lives.”
The research – which follows a recent study highlighting the need for greater support to be given from the point of MS diagnosis – involved 4,888 people participating in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, 81 per cent being women, who had an average age of 42 years when diagnosed with MS. All had been diagnosed within three years of the start of the study.
Each person was assessed at least three times for health-related quality of life and filled out an average of 12 quality-of-life questionnaires over up to 27 years.
“People with multiple sclerosis report a lower quality of life when compared to people without the disease, and even those with other chronic conditions,” said Dr O’Mahony.
“There are several factors that may play a role. Our research sought to identify such factors so they can be addressed early in the course of the disease.”
For physical quality of life, researchers divided participants into five groups. In the first group, 26 per cent of participants, had consistently low and stable quality of life. The second group, 29 per cent had moderately low and stable quality of life. The third group, 13 per cent had moderate to low quality of life within the first years after diagnosis followed by normal quality of life thereafter. The fourth group, 17 per cent had early decline and then an increase to moderate to normal quality of life. The fifth group, 14 per cent had normal quality of life for 20 years and then a decline.
Researchers found people who were older when diagnosed with MS and those with worse physical impairments or worse fatigue had an increased risk of being in the group with the worst physical quality of life.
The people in the lowest group had an average age of 46 years at diagnosis, compared to an average age of 38 years for the group with the highest quality of life.
The people in the worst group had moderate disability, such as problems with their gait and mobility or were starting to use a cane for walking, while those in the best group had normal functioning or mild disability.
For mental quality of life, researchers divided participants into four groups. The first group, 19 per cent of participants, had chronically low quality of life. The second group, 33 per cent had moderately low and stable quality of life. The third group, 22 per cent reported moderately low quality of life with the first ten years after diagnosis followed by normal mental health. The fourth group, 26 per cent reported chronically normal quality of life.
Researchers found people who had an annual income of $50,000 or less or no post-secondary education had an increased risk of being in the group with the worst mental quality of life.
A total of 62 per cent of the people in the lowest group had incomes of $50,000 or less, compared to 44 per cent of those in the highest group.
Furthermore, 38 per cent of those in the lowest group had no post-secondary education, compared to 22 per cent of those in the highest group.
The subtype of a person’s disease, that is relapsing remitting or primary progressive at onset, did not affect their membership in any of the physical or mental quality of life groups.
The study is published in Neurology, the medical journal of the American Academy of Neurology.
