Disease Progression Has Significant Effect on Quality of Life of ALS Patients, Study Says

Disease Progression Has Significant Effect on Quality of Life of ALS Patients, Study Says

In addition to symptoms of depression, disease progression is one of the strongest influences on health-related quality of life in amyotrophic lateral sclerosis (ALS) patients, a study reports.

According to the study, titled Disease progression impacts health-related quality of life in amyotrophic lateral sclerosis,” slower disease progression is linked to higher levels of emotional well-being in these patients. It was published in the Journal of the Neurological Sciences.

ALS) is a progressive neurological disease that destroys the nerve cells, leading to an inability to perform day-to-day functions. The rate of disease progression and deterioration of physical activity vary considerably from patient to patient.

Factors such as impaired physical function and mental disorders such as anxiety and depression, which have a higher incidence in ALS patients than in the general population, can all have a negative effect on the health-related quality of life of these patients.

Researchers believe that faster disease progression can significantly influence a patient’s quality of life, but the relationship between the two was not entirely clear. So a team at the University of Jena in Germany designed a study to test this hypothesis.

A total of 161 ALS patients, recruited between May 2013 and December 2017, answered the long version of the ALS Assessment Questionnaire (ALSAQ-40), which measures health-related quality of life.

The ALSAQ-40 assesses five domains: physical mobility, activities of daily living/independence, eating and drinking, communication, and emotional well-being. It also determines the presence of depressive symptoms, hopelessness, dysphagia (difficulty swallowing), and pain.

Researchers used the revised ALS Functional Rating Scale (ALSFRS-R) to quantify physical impairment.

Most patients were in stages 2 and 3 of the disease. Factors such as age, sex, and ALS subtype did not differ between disease stages. Patients with more advanced disease — the higher stages — had more physical impairment and a lower quality of life.

Researchers found that physical impairment, depression (reported in more than two-thirds of the patients), pain, hopelessness, and progression rate were the factors that more strongly influenced health-related quality of life in ALS patients.

“The present study confirms that physical function and psychological factors are important predictors of health-related [quality of life] in ALS. Here, physical ability and depression had the strongest influence,” the authors wrote.

“While substantial evidence for depression being a core predictor of health-related QoL in ALS already exists, the present study has revealed that the progression rate is also a relevant and independent predictor of health-related QoL in ALS,” they added.

Emotional well-being, activities of daily living/independence, and communication and eating were the subdomains most strongly influenced by the progression rate.

Further studies that evaluate the changes over time in disease progression, emotional well being, and health-related quality of life would help to better understand the mechanisms behind these associations, according to the investigators.


  1. Michelle Vinci says:

    Do the findings of this study surprise anyone at all? Is it any wonder that loosing every physical ability one by one, every freedom, every ounce of independence is a crushing emotional blow? There are countless studies that correlate emotional and physical wellbeing. If the former is bad it has a negative impact on the latter and vice versa. We know this already!! I so wish the resources spent on studies like this one would instead be devoted to adding more substantively to what we know about this horrific disease. Finding a cure would improve everyone’s emotional state.

  2. Barbara McLean says:

    I do not understand why money is spent on this type of research. You take any disease this would the be same outcome. I feel that most physical therapists, doctors, and neurologists do not do enough in giving us information on how to live day to day. They dwell on what is going to happen in the future. I am positive most of the time, I live alone, I still do my cooking, cleaning, driving. But most visits, I leave ALS clinic down and defeated for that night. It was suggested to me 3 mos ago that I should be considering going into a skilled nursing center. But the next morning I resolve to live my life as best as I can for as long as I can. I have lived with ALS 18 months. I realize ALS affects each person differently. But my Mom was told to go home to get ready to die and to get her affairs in order. I watch give her up. When I got the diagnosis I was told you could live 3-5 years some people live longer. I have been own avocate. I researched how to do physical therapy on line for drop foot, I researched how music has positive effect on Parkinson, about mirroring, read about people who have come back from stroke, neuroplasticity. One therapist told me I should slow down on my exercise so I did for two months and lost ability to stand on my toes. When faced with the chance to live now or to dwell on the future, I learned to dance for the first time, it makes my feet and heart happy and they move better with music. I learned to cardio drum, It makes my hands and heart happy. I reasoned that if I wore toe socks it would keep my toes from curling/clawing and would widen my toe base. I am still walking with the assistance of a rollator. But I can walk the distance of a room without a rollator or a pool with a pool noodle in front of me. I can stand on my toes in the pool, I can do half jacks, I can jog, I can bend down and jump, I can do weights, I can lift my leg up high and most anything want to do. I have a great physical therapist who inspires me to try everything and I find I can do it. I read about a woman who went through terrible life experience that changed her appearance and life forever. A friend told her to allow only 10 minutes to feel any negative emotion and then to live her life the rest of the day. I have taken this advice to heart; as I watched my Mom suffer with Bipolar for 10 years before she had ALS. It was a dark hole that I will not allow myself to go into. Once she had ALS she realized how fragile life is, her attitude changed. I chose to learn to draw to handle my emotions. I have fallen 25 times, but a small voice – HOPE- tells me to get up my journey is not over. I have had people tell me I should go to a wheelchair because I suffered a sprained wrist, foot, and had 10 stitches in my forehead, Three different falls. But to me TO LIVE IS TO MOVE. I enrolled myself in land therapy but they were only treating my foot,leg, and hips. I enrolled myself in aquatic therapy where my whole body is involved and where I am thriving even though I don’t know how to swim. I want to live more than I want to be fearful. It brings joy and is so freeing. Be your own advocate,find a good physical therapist, Find different way to do things, Challenge fear, Dig down don’t give too soon. Quality research is being done and I feel like we are closer than ever. Will it happen in my life time, probably not, but never say never. My walk is slow, I stumble and fall, my speech is slurred, It is harder to do everything now. But I am winner every time I make an effort and every time I CAN DO something. PS I can stand on toes in the water. I started blogging at word press – alsismorethanabadday. For anyone who has lost the their fight with ALS I do not mean to offend you. I know for now ALS always wins. But I chose to have faith and I believe God is not finished with me yet.

  3. Joanne says:

    I in no way want to be critical of research into ALS and absolutely believe quality of life to be paramount in the support of ALS patients but are the results of this study not obvious? Would previous research, anecdotal evidence and simply common sense (which I realize are obviously not ‘evidence-based’ science) not all have come to the same conclusion already?
    With limited funding for research into ALS would research $$ not be better spent elsewhere?
    I sincerely welcome differing views on my thoughts which might broaden my perspective.

  4. David Buschhorn says:

    The first paragraph seems sort of… Duh… 🙂

    “In addition to symptoms of depression, disease progression is one of the strongest influences on health-related quality of life in amyotrophic lateral sclerosis (ALS) patients, a study reports.”

    Talk to someone with incurable cancer and tell them the average is six years, but obviously, because of math, half the people die sooner than that.

    No one survives.

    If they’re tanking faster than that… probably going to be less happy than those dying slower. But they’re not happy either. Just less UNHAPPY about it 😉

  5. Mark Berardi says:

    Money that could have been put towards research was spent on this ridiculous study. There isn’t a pALS or cALS on the planet that needs a study to tell them that “Disease Progression Has Significant Effect on Quality of Life of ALS Patients.”

  6. Clements Price says:

    My Wife was diagnosed with ALS (Lou Gehrig’s Disease) when she was 72 years old 4 years ago. The Rilutek (riluzole) did very little to help her. The medical team did even less. Her decline was rapid and devastating. Her arms weakened first, then her hands and legs. Last year, a family friend told us about Organic Herbal clinic and their successful ALS TREATMENT, we visited their website www. organicherbalclinic. com and ordered their ALS Formula, i am happy to report the treatment effectively treated and reversed her Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, she is able to walk and eat well, sleep well and exercise regularly., she is pretty active now and her attitude is extremely positive.

  7. Amanda says:

    I dont understand the reason someone would do a study like this… it seems obvious that anyone with a progressive neurological disease diagnosis would experience higher depression and anxiety which would then effect health and well-being… its kind of a no-brainer… so what did the study results change? how did this study make anything better?

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