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Appendix: Fatigue Survey

To better understand how patients with chronic health conditions experience their fatigue, the following survey was conducted.

The survey is now closed and the results can be viewed in our eBook

Who are Cambridge Cognition?

Cambridge Cognition is a neuroscience technology company developing digital health products to better understand, detect and treat conditions affecting brain health and mental wellbeing.

Patients are the indisputable experts in their condition, and as such, we want patients to shape the products we develop.

To launch this initiative, we have put together a brief online questionnaire about fatigue - a debilitating symptom that affects many people living with chronic health conditions, which is often under-recognised or under-treated.

 

How can I help?

If you live with a chronic health condition and suffer from severe and debilitating fatigue, we would like to hear how you experience your fatigue and your experiences with the treatments that are currently available for you.

 

What do I have to do?

We really appreciate you taking part in this survey. This survey should take around 20 minutes to complete.

 

What will happen to my data?

Your responses will be used to shape our future products. We will also write a blog post on our website that summarises the results of this survey. We may use some of your answers as quotes in this blog post, but will do so in an anonymous way, so that your identity remains private and protected.

 

By selecting ‘Start Survey’ you consent to the use of the information you provide in accordance with the above message.

 

Start Survey

 

———

 

Fatigue is a feeling of physical tiredness and lack of energy that everybody experiences from time to time, in response to exertion, such as going for a run. But people who have some medical conditions experience fatigue more often and with greater impact, at times when there is not an obvious cause.

 

1. Do you experience fatigue as described above?

Yes, I experience very strong levels of fatigue (> question 2)
No, I do not experience any other fatigue, other than what is typical from time to time (> end survey)
I would rather not say (> end survey)

 

2. What is your age?

18-24
25-30
31-40
41-50
51-60
61 – 70
71 or greater

 

3. Do you have any long-term health conditions?

Yes, I have a long-term health condition
No, I do not any long-term health issues
I would rather not say

 

(if 3a)

4. Have you ever been diagnosed with any of the following? (Please tick all that apply)

Diabetes
Alzheimer’s disease or dementia
Cancer
Arthritis
Asthma
HIV/AIDS
Heart disease
Chronic Obstructive Pulmonary Disease (COPD)
Cystic Fibrosis
Depression
Psychosis or Schizophrenia
Psoriasis
Eczema
Acne
Epilepsy
Tic disorder
Anxiety disorder
Multiple Sclerosis
Fibromyalgia
Other: [text box]
I would rather not say

 

5. How long have you lived with your health issue(s)?

A. Less than 1 year

B. More than 1 year and less than 3 years

C. More than 3 years and less than 5 years

D. More than 5 years and less than 10 years

E. More than 10 years

F. I would rather not say

 

6. How does your fatigue typically manifest? Check all that apply.

            A. I have periods without fatigue

            B. My fatigue appears suddenly

            C. My fatigue appears subtly

            D. I always have fatigue and the intensity changes over time

            E. I always have fatigue and the intensity doesn’t change over time

            F. My fatigue worsens over time

            G. I don’t know

            H. My fatigue manifests in another way [open text]

 

 

7. What are the most significant symptoms that you experience resulting from your fatigue? (Examples may include restricted range of motion, muscle spasms, changes in sensation, low mood, anxiety, etc.)

            [open text]

 

8. Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your fatigue? (Examples of activities may include work or school activities, sleeping through the night, daily hygiene, participation in sports or social activities, intimacy with a spouse or partner, etc.)

            [open text]

 

9. What are you currently doing to help manage your fatigue? (Examples may include prescription medicines, over-the-counter products, and non-drug therapies or activities)

            [open text]

 

10. What factors do you take into account when making decisions about selecting which treatment or therapy to try?

            [open text]

 

11. How well does your current treatment regimen manage your fatigue? (Considerations include severity and frequency of your fatigue and the effects of fatigue on your daily activities)

            A. Very poorly

            B. Slightly poorly

            C. Neutral

            D. Slightly well

            E. Very well

 

12. What are the most significant downsides to your current treatment or therapy and how do they affect your daily life?

            [open text]

 

13. Does anything stop you accessing treatments or therapies (new or current)?

            [open text]

 

14. What specific things would you look for in an ideal treatment for your fatigue?

            [open text]

 

15. Would you like the opportunity to tell us more details about your experiences to help us gain a richer appreciation of your experiences?

Yes
No

           

(If 15.A & 15.B)

16. Would you like to take part in future surveys about your health?

A. Yes

B. No

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