Multiple Sclerosis Patients Identify Symptoms that Worsen Quality of Life

Multiple Sclerosis Patients Identify Symptoms that Worsen Quality of Life

Loss of health-related quality of life is caused mostly by balance problems, muscle stiffness, and depression in people with relapsing-remitting multiple sclerosis (RRMS)and for those with progressive MS, the causes are muscle rigidity, paralysis, weakness, and pain, according to a study based on patient-reported outcomes.

The study, “The disease burden of Multiple Sclerosis from the individual and population perspective: Which symptoms matter most?” was published in the journal Multiple Sclerosis and Related Disorders.

Loss of health-related quality of life in MS depends on multiple reasons, including symptoms affecting many functional domains. Studies are needed to evaluate the specific affects of each symptom on patients’ quality of life, in a careful and controlled way. Getting this information is key for successful symptom management and patient care.

Recognizing that need, a team of researchers set out to thoroughly investigate the extent to which specific MS symptoms affected patients’ quality of life, after controlling the results for multiple clinical, demographic, and socio-economic factors. 

The study analyzed patient-reported surveys of 611 patients with RRMS and 244 with progressive MS, included in the Swiss Multiple Sclerosis Registry (NCT02980640), which is an ongoing survey addressing the living conditions of MS patients in Switzerland.

Health-related quality of life was assessed by a patient self-report called the European Quality of Life 5- Dimension (EQ-5D-5L) index, comprising the dimensions of mobility, self-care, usual activities, pain/discomfort, and anxiety/depression.

In addition, patients were asked to range their overall health from 0% to 100%, corresponding to “the worst” and the “best imaginable” health, respectively, on an EQ-Visual Analogue Scale (EQ-VAS).

Researchers explored the correlation between the patient-reported levels of quality of life and 20 MS-related symptoms, their socio-demographic and clinical information. Independent analyses were done for RRMS and PPMS patients, and the impact of symptoms was evaluated both at individual and population levels.

Overall, the results showed that depending on the disease course — whether patients were affected by a steadily progressing MS or a disease with intermittent periods of relapse and remission (RRMS) — quality of life was affected by different symptoms.

The most frequent symptoms reported by patients with RRMS were a burning or prickling sensation, or paresthesia (77.1%), fatigue (74.1%), and weakness (54.8%), while those with progressive MS complained mostly about gait (90.6%) and balance problems (84%), as well as fatigue (83.2%).

At the individual level, loss of health-related quality of life — measured by EQ-5D-index — among those with RRMS was predominantly associated with gait problems, tremor, and difficulties in balance. Patients who experienced these problems also reported a lower quality of life corresponding to a median loss of 6.5, 5.3, and 5.1 points, respectively, in the EQ-5D-index. That is in comparison with those not experiencing those difficulties (the lower the EQ-5D-index, the worse the health-related quality of life).

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In patients with progressive MS, muscle rigidity (spasticity), paralysis, and bowel problems were the symptoms most contributing to the worsening of their quality of life, lowering 10, 8.7, and 5.5 points in the EQ-5D-index.

In addition, when quality of life was measured with the visual analogue scale (EQ-VAS), different symptoms gained importance. Namely, balance problems, depression, dizziness, and spasticity in RRMS patients were the most strongly associated with loss in self-perceived health, whereas for progressive MS patients it was weakness, pain, and paralysis.

When researchers combined quality of life data from EQ-5D and EQ-VAS indexes with the frequency of each symptom in the MS population, they determined the symptoms that contributed the most for reducing the quality of life at the population level.

The RRMS population was affected mostly by balance problems, spasticity, and depression, while strongest losses of quality of life among the progressive MS population were caused by spasticity, paralysis, weakness, and pain.

“Many symptoms with the largest effects in individuals also substantially contribute to the population disease burden,” the researchers wrote.

The findings may be used to help manage MS and to optimize healthcare resources.

“From a symptom management perspective, assessing the relative importance among the different symptoms could aid healthcare decisions. Moreover, population level data on the MS symptom burden may guide efficient allocation of healthcare resources” the team concluded. 

10 comments

  1. APPRECIATE READING THESE ARTICLES. I NEED THE CAP LOCK BECAUSE OF VISION ISSUES. ONE THING THAT I HAVE HAPPENING AND MAKES NO SENSE TO ME AT ALL, THAT ISSUE IS FROM RIGHT ABOVE MY KNESS BOTH LEGS UP TO MY THIGH ARE WHEN TOUCHED FEELS LIKE BURNING. MY HUSBAND HELPS ME WITH MY LEGS BECAUSE OF M.S. I LOST THE ABILITY TO MOVE THEM AND CAN’T WALK ANY MORE.I ALSO CAN ONLY SLEEP ON MY BACK BECAUSE I CAN’T TURN MY LOWER BODY ANY MORE, STINKS. I LIVE IN MY POWER CHAIR. AS LONG AS THOSE AREAS OF MY LEGS ARE NOT TOUCHED, THEY ARE FINE. THE SECOND THOSE AREAS ARE TOUCHED I WANT TO SCREAM. I WAS GIVEN (GABAPENTIN) THREE A NIGHT BUT THEY NO LONGER SEEM TO HELP. GOING TO SEE DOCTOR SOON HOPE I FIND HELP. HERE’S A SERIOUS ? WHY ONLY FROM ABOVE KNEES TO THIGH???? ANY ONE ELSE HAVE THIS ISSUE IN ANYWAY? IF SO E-MAIL ME AND LET ME KNOW AND IF YOU HAVE BEEN GIVEN ANY EXPLANATION AND IF YOU WERE GIVEN ANY TREATMENT FOR IT. THANK YOU ALL MY FRIENDS. I EAGERLY AWAIT ANY INPUT. BLESS YOU ALL.

    • Carol Hurst says:

      Hi Brenda my name is Carol 1 also have ms 10 years do not work cant walk unassisted live in Australia am on Facebook love to communicate with you thinking of starting a group for people with ms my husband and 1 are very serious about this its such a mysterious thing to explain to someone therefore frustrating

      • Debbie Schneider says:

        Hi Carol. I was diagnosed with PPMS 11 years ago. I also cannot work and cannot walk unassisted. I live in the US in Nashville, Tennessee. I am on Facebook and if you do start a group I would love to be in it. It is a crazy disease. I am on Facebook as Debbie Schneider.

    • Betty Riches says:

      Hi Brenda, I too have PPMS and have issues, my right arm and foot being the worst. i use the PureWave Massager on my muscles and it is making a big difference in my rigidity … i use pain creams on areas that are super sensitive, which makes it more bearable. Theres a website called “themsgym.com” there are thousands of people with different scenarios and the man (Trevor Wicken) who started this website is trained in neurospascisty(sp?) and has helped so many people. We need to move our bodies. We’ve been told to settle for a life in a chair, but there are ways of re-training the brain for real. Check it out, you’ll be glad you did!! God Bless You 🙂

    • JoAnn Bigley says:

      Brenda, I am sorry you are having this experience.

      The information and links in this book changed my life. Reading it a little work but I promise you, I suspect you will see an easing of your symptoms relatively quickly. It is not a difficult to follow the protocol either. Reading this book truly changed my life. “ Multiple Sclerosis and (lots of) Vitamin D: My Eight-Year Treatment with The Coimbra Protocol for Autoimmune Diseases”
      by Ana Claudia Domene (Author)
      4.9 out of 5 stars 46 customer reviews kindle

      At the end of the book is a link to a safe and secure site for a lot of us to learn, share successes, show videos of our successes. I haveMS FOR 36 Year, RA for 5 years.

      You will be able to choice a protocol doc from a contact list. He or she will join the team you already work with. The protocol doc is focuses solely on monitoring your journey with the protocol.

      Everyone is different but my quality of life has improved and I am only on it 7 months.

  2. jen morrison says:

    Fatigue is definitely the Number 1 symptom affecting my quality of life. Every work day is it’s own kind of hell. Exhaustion causes my mind to be foggy, my attention to wane, and makes my ability to concentrate almost nonexistent. Second is tied with gait and balance. They make being a Runner very uncomfortable. Gait abnormalities change how you run and put stress on joints differently than what your body is used to. I love running…..and I almost can’t do it anymore. That is devastating.

  3. Cole says:

    Fatigue! fatigue! fatigue! . It’s like being trapped unable to do anything ever! everything to the point of lifting the sheets off you is like climbing Mt.Everest.

  4. Liz says:

    they forgot the cognitive issues…that in its own right worsens your self worth where working a normal job is concerned. Employers don’t want a stupid dumb person..which is what I feel I have sometimes been treated as…plus overlooked for a job

  5. Yvette Jimenez says:

    Everything sounds like neuropathy ..only 1 Dr. Said i may have M.S but my regular primary says its because of diabetes…but everything hurts even the slightest lil brush with my skin hurts..i have no feeling in both feet all the way up to my knee and sometimes i lose balance and if i dont be carefull how i walk i fall to the ground ..i take 900mg of Gabapentin it really only works foor a lil while and at Nite it feels like torture my legs stay COLD all nite long no matter what i use socks blankets nothing helps its like its from the inside is there any help or am i waitn to lose my legs eventually

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