Poor Sleep Common in Newly Diagnosed ALS Patients, Study Shows

Poor Sleep Common in Newly Diagnosed ALS Patients, Study Shows

Newly diagnosed amyotrophic lateral sclerosis (ALS) patients often experience poor sleep quality due to symptoms of depression and difficulty turning in bed, a patient survey shows.

The study, “Poor Sleep Quality in Patients With Amyotrophic Lateral Sclerosis at the Time of Diagnosis,” was published in the Journal of Clinical Neuromuscular Disease.

Sleep disturbance is common in ALS patients. Many factors contribute to poor sleep including muscle weakness, breathing difficulty, and mood swings, among others. However, most studies have reported on sleep disorders in patients with advanced ALS. The sleep status is unclear in ALS patients who are in the early stages of the condition.

To address this, researchers evaluated the prevalence of poor sleep quality and associated the risk factors among newly diagnosed ALS patients using surveys completed by the patients.

A total of 43 patients (mean age of 63.8 years) and 43 individuals with a normal neurological evaluation used as controls ( mean age of 61.3 years) were included in the study, conducted at the University of Maryland ALS Clinic. Patients were enrolled during their first appointment at the clinic.

Trained specialists in neuromuscular disorders, as well as sleep specialists, performed a full medical evaluation on the participants. Information on their age, gender, race, weight, height, body mass index (BMI), and time and site of symptom onset was also collected.

After being evaluated, all participants completed two questionnaires, the Pittsburgh Sleep Quality Index (PSQI) and the Epworth Sleepiness Scale (ESS).

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The PSQI evaluates the overall or global sleep quality in the month before the visit. There are seven components, each addressing different aspects that affect the quality of sleep. The total score ranges from zero to 21 with a mean PSQ1 of greater than five indicating poor sleep quality.

Poor quality of sleep was prevalent among ALS patients as indicated by the PSQ1 scores. The mean PSQI score was significantly higher in  ALS patients (7.1 ) compared with the controls (4.7). A higher number of ALS patients (63%, 27 patients) had a PSQ1 score of greater than five compared with the controls (37%, 16).

The ESS measures the likelihood of falling asleep during the day. It evaluates daytime sleepiness in eight different scenarios. The total ESS score ranges from zero to 24, and a score of more than nine indicates excessive sleepiness during the day.

Although many ALS patients reported poor sleep quality, fewer indicated excessive sleepiness during the daytime without any statistical correlation between the two factors. An ESS score of greater than nine was reported in 14% (6) of the ALS patients and 5% (2) of the control group. The mean ESS score was 6.6 in the ALS group compared with 5 in the control group.

ALS patients also answered two other surveys, the ALS Functional Rating Scale (ALSFRS) and Beck Depression Inventory-Revised (BDI-II).

Researchers evaluated the functional ability of ALS patients using the ALSFRS questionnaire. It assesses the ability to perform 10 everyday tasks such as turning in bed, walking, breathing, speaking, swallowing, producing saliva, writing, handling food, climbing stairs, and dressing and hygiene. The ALSFRS total score ranges from zero to 40, where higher scores indicate poor functional status.

The mean ALSFRS score of patients was 30.7. Statistical analysis revealed that although the overall ALSFRS score did not significantly correlate with diminished sleep quality (measured via the PSQ1), difficulty turning in bed contributed to it. Researchers found that 23% (10) of ALS patients had trouble turning in bed, and these patients had a mean PSQ1 score of 9.7.

The severity of depression symptoms (if any) in ALS patients was evaluated using the BDI-II survey. The score of this 21-question survey ranges from zero to 63 and is divided into symptom severity levels — minimal  (zero-13), mild (14-19), moderate (20-28), and severe (29-63).

ALS patients had a mean BDI-II of 11.3. The study found that 23% (10) of the patients showed mild depression while 12% (five) had moderate symptoms.

Moreover, there was a statistical correlation between sleep quality and depression symptoms. The team noted that the mean BDI-II was 7.8 in ALS patients who slept well compared with 13.7 in those who reported poor sleep.

“Patients with newly diagnosed ALS have poor sleep quality, which is associated with depression and difficulty turning in bed,” the authors said.

“Given the high prevalence of poor sleep in these patients, longitudinal studies to examine the evolution of sleep quality and the effectiveness of individualized interventions are needed in patients with ALS,” they concluded.


  1. Mary Williford says:

    I have ALS.The problems I’m having is been be in pain.I don’t problem sleeping its me being in pain from my hips.It’s also getting a pain Dr to understanding ALS too.

  2. Shelley Steva says:

    Is this a surprise? It is a horrible diagnosis! Of course the newly diagnosed patients were depressed- and for me I have no problem turning over or breathing in bed. You have just been told that you will have the most horrible death possible and you are surprised people aren’t sleeping at night?
    I do hope this study will lead to further help for patients but please don’t act like this can be a surprise to anyone

  3. Janet Brisky says:

    To me this is a big waste of money a study that shows newly diagnosed patients don’t get enough sleep need to put that money and trying to find a cure for this deadly disease

  4. Alex says:

    A one more weird research. People who were told they will die soon from an awful disease with almost no chance to survive sleep bad after they heard it. Really? What a surprise! I wonder who pay for such useless researches?

  5. Dave Reckonin says:

    So, a person gets a diagnosis of ALS.. an untreatable fatal disease.
    What ? They can’t sleep like a baby?

    What another huge waste of money informing us of the obvious.

    Are they having some fun with us all in the ALS world ?

  6. Mary Burke says:

    Can you please help my son-in-law with ALS with one of these trial drugs? He has been to mayo clinic in Rochester and Iowa city hospitals recently. We are desperate.

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