Swallowing Problems Lower Multiple Sclerosis Patients’ Quality of Life

Swallowing Problems Lower Multiple Sclerosis Patients’ Quality of Life

Dysphagia, or problems with swallowing, is common in patients with multiple sclerosis and significantly reduces their quality of life, according to a new Australian study. Symptoms such as coughing and choking, and mental health issues related to eating or drinking, are common in this patient population, the data show.

The research, “The frequency of dysphagia and its impact on adults with multiple sclerosis based on patient-reported questionnaires,” was published in the journal Multiple Sclerosis and Related Disorders.

Studies estimate that dysphagia may affect 30-40% of MS patients, but its exact frequency is unknown.

Serious complications such as dehydration, malnutrition and aspiration may occur as a consequence of dysphagia, potentially leading to breathing difficulties, fatigue and pneumonia, respectively. Dysphagia also may affect patients’ quality of life, their pleasure in engaging in social events, and their relationships with family and friends.

Despite its relevance, no studies have addressed suggestive symptoms of dysphagia in MS patients, as well as its affect on quality of life.

Aiming to address these questions, a research team at The University of Sydney, Australia, determined the frequency of dysphagia in adults with MS using the 10-item Eating Assessment Tool (EAT-10) and the swallowing quality of life questionnaire (SWALQOL) to assess how swallowing problems affect patients’ quality of life.

EAT-10 is a self-assessment tool to identify the risk of dysphagia, providing information on function, emotional impact, and physical symptoms. Each of the 10 items is ranked from 0 (no problem) to 4 (severe problem). A score of three or higher suggests dysphagia.

In turn, SWALQOL includes 44 questions on 10 quality of life concepts, including burden, symptoms and frequency of dysphagia, eating duration, food selection, mental health, fear related to eating, and social concerns related to swallowing difficulties.

Participants also completed questionnaires focusing on demographic data, medical history, type of MS, disability — as assessed with the Expanded Disability Status Scale (EDSS) — and other existing comorbidities.

A total of 103 adult MS patients (mean age 47 years) met the inclusion criteria for the study, 81 were women (78.6%) and 22 men (21.4%). Eighty-two participants had relapsing-remitting MS (79.6%), 11 primary progressive MS (PPMS) (10.7%), and 10 secondary progressive MS (SPMS) (9.7%).

Mean disease duration was 9.6 years, and mean EDSS score was 2.5, which corresponds to mild or minimal disability.

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The link between dysphagia and EDSS implies that swallowing difficulties increase with advanced stages of disability, the team noted. “Therefore, it is necessary to assess the presence of patient reported dysphagia in the earliest stages of the disease,” they wrote. “This would allow healthcare professionals to implement preventive interventions and reduce the risk of physical and social complications.”

Results of EAT-10 showed that 38% of patients reported swallowing problems, which is in line with previous reports.

As for specific symptoms, 66% of patients reported coughing during or after food and/or liquid intake; 63% complained of a sensation of food sticking in the throat; 61% of throat clearing after consuming food and/or liquids; 58% had thick saliva; 57% and 50% complained of choking on liquid and food, respectively; 47% coughed food and/or liquid out; 40% gagged; and 34% reported drooling and food sticking in the mouth.

The data also revealed that patients with dysphagia scored significantly lower across all SWALQOL domains than those without swallowing problems. The most marked difference was in the burden of dysphagia, as 60% of participants with dysphagia reported that impaired swallowing is a major distraction and that dealing with it is very difficult.

Nearly 50% of MS patients with dysphagia complained of mental health implications, such as feeling frustrated, discouraged, depressed and annoyed. Fear of choking and worry about getting pneumonia were reported by almost half of participants with swallowing problems. This led to reduced interest and enjoyment in eating and drinking in almost 45% of patients with dysphagia.

Also, nearly one-third of individuals with swallowing difficulties reported taking a long time to finish meals, particularly compared to healthy adults. Dysphagia also affected social life and work.

Of note, no correlations between dysphagia frequency or symptoms and MS types were found, which the authors attributed to the reduced number of PPMS and SPMS patients in their study.

“Adults with MS-related dysphagia had reduced scores across all domains of swallowing-related quality of life. These findings support referral to speech-language pathologists for management of dysphagia from the early stages of the disease,” the researchers concluded.

Nonetheless, “further work is required to determine whether early intervention for dysphagia can sustain or improve swallowing function as well as swallowing-related quality of life domains,” they added.

José is a science news writer with a PhD in Neuroscience from Universidade of Porto, in Portugal. He has studied Biochemistry also at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario, in London, Ontario. His work ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.
José is a science news writer with a PhD in Neuroscience from Universidade of Porto, in Portugal. He has studied Biochemistry also at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario, in London, Ontario. His work ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.
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  1. Gwendolyn E Mugliston says:

    I have had MS since I was in my 20’s. It is relapsing-remitting. The periods between the relapse and cessation of such are variable and can range from days to months. I am now 79 years old.
    Though I have “always” had intermittent problems with swallowing and gagging, it has never been bad enough to warrant medical attention. Just recently it became an issue when it seems thick mucus collects about mid throat and it takes several swallowing attempts to ‘get it down’. To complicate the issue I have an osteophyte growing on C1and/or C2 causing a bulge in my pharynx near the root of my tongue. It does not impede food so much as catch certain types of gooey food which I then have to work at swallowing. What a mess.
    The VAMedical Center people seem to think it is due to my tongue’s muscles being “weak”. I will be given, soon, a machine to strengthen my tongue. No one mentions the radiographic and visually apparent osteophyte or my history of periventricular white matter plaques. And they make me feel guilty for complaining about this sticking food problem.
    Furthermore, at no time is MS ever mentioned though I have brought it up. When I asked why the doctor in charge said it was because I was “too old” to have MS and MS never causes symptoms such as I told them.
    I then found an article in PubMEd which says there is no real age limit on MS and MS patients’ lives which are shortened only several months compared to their age related cohortes.
    My throat is still sticking food and other than the fact I am considered weird and fabricating my history of MS according to this “doctor”, the situation I am in is no better than before the fluoroscopy, etc., tests.
    I have talked with others with similar experience. What can any of us do?

    • Ann LaFontaine says:

      Hi. I have Dysphagia too. I’m a dietitian, or was, before I went on disability. I have speech therapy give me some swallowing exercises, but what is the machine you ate referring too? Keep me posted on how it works for you.

  2. Marie Evans says:

    Yes indeed what can we do? I don’t think the care is there when you get old cause I suppose there are all sorts of things that can go wrong. My swallowing problems have just begun so now time on a waiting list to see a Gastroligist approx 18 wks. This may not have anything to do with my MS(which I’ve had for 20 yrs). It gets quiet confusing when you get old there are so many conditions you are affected with I wish you could put them all together under an umbrella of things.

  3. Dori Rocco says:

    Did we really need a another study on “quality of life”? Almost every MS symptom effects your quality of life in one way or another. It’s a no-brainer. Stop spending money on this crap and find us a cure!! Check “Laryngopedia” website if you have swallowing problems. It answered all of my questions.

  4. Paul Knox says:

    The third commenter is right; to say any MS symptom reduces quality of life is a truism. However, the recommendation for early referral to a paramedical clinician is spot-on and should be emphasized. This is true not only for dysphagia but also for other physical symptoms caused or exacerbated by MS. Movement and balance problems eventually occur in the great majority of MS patients. They can be addressed with efficacy by physiotherapy. As a 13-year MS patient (Dx age 55) I believe referral for physiotherapy shoul occur at diagnosis, even when symptoms are absent. This would allow patient and therapist to begin the program of strengthening and stretching that is beneficial in its own right, will increase the patient’s reserves of strength, and will probably be needed as the disease progresses to counter dystonia and weakness in the lower limbs and core. Early referral for occupational therapy and other paramedical treatments, as well as neuropsychology or neuropsychiatry and physiatry, should also be considered. These referrals are at least as important in the early stages of MS as choosing from among pharmaceutical DMTs.

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