Assessing Your Narcolepsy Symptoms

Treating your narcolepsy symptoms helps to decrease its impact and improve your quality of life. But how do you know that the treatments are working? Or that your symptoms are getting better? You do this by assessing your narcolepsy, its symptoms, and your response to the different treatments. This process often involves self-evaluations of your health. But it is not limited to those things. These are some of your options for assessing your narcolepsy.

Ullanlinna Narcolepsy Scale

The Ullanlinna Narcolepsy Scale (UNS) has 11-items that assess different aspects of your narcolepsy, such as the frequency of your daytime sleepiness episodes, unintentional napping, muscle weakness, and the amount of time it takes you to fall asleep each night. You respond to each item by rating how often you have that symptom, ranging from 0 (never) to 4 (several times a day). A higher score suggests more significant symptoms.

Download a free copy of this scale here.

Functional Outcomes of Sleep Questionnaire (FOSQ)

The Functional Outcomes of Sleep Questionnaire (FOSQ) is a tool that measures the impact sleep-related symptoms have on your life. The FOSQ is the gold standard for looking at the effects of sleep disorders on health-related quality of life. This tool does not only used to assess narcolepsy but all sleep disorders. And it doesn’t consider all of your narcolepsy symptoms. But it does look at how your excessive drowsiness affects five areas of your life, like your activity levels, close relationships, and productivity.

You can complete one of two versions. One consists of 30-items across five subscales. You can find a downloadable copy of that form here. Another is a shortened version that consists of 10-items across the same subscales. Download a copy of that form here.

You complete either tool by responding to questions with a score of 1-4. A score of 1 means you have extreme difficulty in the area. On the other hand, a score of 4 means there’s no difficulty. Higher scores indicate a better quality of life. And lower scores suggest that you have more sleep-related issues and a lower quality of life.

Narcolepsy Symptom Assessment Questionnaire (NSAQ)

The Narcolepsy Symptom Assessment Questionnaire (NSAQ) is a 26-item tool that assesses the main symptoms of your narcolepsy, such as sleep disturbances and concentration. This tool is different from others because it considers how well you’re able to concentrate. It’s also unique because it assesses your narcolepsy symptoms before and after treatment.

There’s one limitation to the NSAQ. We can’t use it outside of clinical practice. Still, your provider may use this tool in their office to determine whether or not your symptoms are improving!

Narcolepsy Symptom Status Questionnaire (NSSQ)

The Narcolepsy Symptom Status Questionnaire (NSSQ) is a lot like the NSAQ because it assesses your narcolepsy symptoms after treatment. In essence, it shows you whether what you’re doing is effective and how much or little your narcolepsy is improving. To complete this questionnaire, you answer questions to qualify the severity of your narcolepsy symptoms during different activities of daily living. Scores for this assessment are a bit different; 12 means no symptoms during those activities. On the other hand, an 84 means that you have severe symptoms.

Assessing your narcolepsy after treatment isn’t the only similarity between the NSAQ and the NSSQ. You can’t use the NSSQ outside of a clinical practice either. Despite this, this tool is great for assessing change in your narcolepsy.

36-Item Short-Form Health Survey (SF-36)

The36-Item Short-Form Health Survey (SF-36) does not outright assess your narcolepsy. But it is a tool that providers use to assess your quality of life. Narcolepsy is a condition that we know causes symptoms that can lower your quality of life. So this tool provides important information. 

The SF-36 has 36-items that cover eight areas of your health. For instance, physical or social limitations and pain. You respond to the choices that best describe your current health status. Your provider interprets your responses and gives you a score. Higher scores suggest a better quality of life. A free, downloadable copy of this questionnaire is here.

Swiss Narcolepsy Scale

The Swiss Narcolepsy Scale (SNS) is a quick tool that providers use to screen for narcolepsy. They may also use it to assess your narcolepsy symptoms. You answer five questions about different narcolepsy symptoms. The SNS is easy to interpret. If using it as a screening tool, a score less than 0 indicates type 2 narcolepsy. You may use this scale before and after treatment to assess how your narcolepsy is responding.

The great news is that you can use this tool to assess your narcolepsy symptoms from the comfort of your home! Complete the SNS for free here

Other Opinions For Assessing Your Narcolepsy

Your provider may also decide to use some of the diagnostic tools to assess your narcolepsy symptoms. Questionnaires are great tools to use. You can complete them more than once. So, you can complete one before and after treatment to assess your narcolepsy.