Myotonia: Should we reach a consensus on patient needs?

1. Approximately how many patients with myotonia do you see per month?

a. I don't see patients with myotonia

b. < 10

c. > 10

d. I don't have a patient-facing role

2. In (myotonic dystrophy Type 1) DM1, how relevant is myotonia in terms of how you assess and manage patients?

a. Myotonia is an important aspect of DM1 assessment. I always clinically evaluate the patient for myotonia even if they do not report symptoms

b. DM1 is complicated. Myotonia might not be the patient’s main problem and it is not necessarily a clinical priority for me. I ask about it in the history but do not assess it 

c. I don’t know enough about this subject to give you an answer right now

d. I do not have a patient-facing role

3. In (non-dystrophic myotonia) NDM, how relevant is myotonia in terms of how you assess and manage patients?

a. Myotonia is an important aspect of NDM assessment. I always clinically evaluate the patient for myotonia even if they do not report symptoms

b. Myotonia in NDM might not be the patient’s main problem and the disease is not necessarily a clinical priority for me. I ask about myotonia in the history but do not assess it 

c. I don’t know enough about this subject to give you an answer right now

d. I do not have a patient-facing role

4. What proportion of your patients with DM1 complains about ‘stiffness’ (i.e. myotonia)?

a. Most of them

b. About half of them

c. A clear minority of them

d. They very rarely or never complain about myotonia 

e. I do not have a patient-facing role

5. What is the typical length of time between a patient first seeing their general physician with symptoms suggesting myotonia, and receiving a confirmed diagnosis of NDM?

a. < 1 year

b. 2–5 years

c. 5-10 years

d. > 10 years

6. What can we do to shorten the time to diagnosis for patients with NDM?

a. Increase awareness on differential diagnosis for NDM sub-types (e.g. lower limb myotonia, tongue myotonia, eyelid myotonia)

b. Improve diagnostic referral (e.g., specialists educating generalists and community physicians)

c. Provide screening programmes in families with an identified case

d. Myotonia gets enough resource focus already

7. What do you think could be the most common symptom to prompt a person to have a first consultation about DM?

8. Do you think patients with NDM are satisfied with how their myotonia/stiffness is managed?

a. The majority of patients with NDM are satisfied

b. The minority of patients with NDM are probably satisfied

c. I don’t usually treat myotonia in patients with NDM

d. I do not have a patient-facing role

9. Do you ask patients with DM or NDM to rate how they are affected by myotonia/stiffness?

10. Having watched the symposium, have the presentations changed your views on myotonia management in DM1?

a. I will not change anything in my clinical practice. DM1 is complicated, and myotonia is not their main problem

b. I will evaluate people with DM1 more carefully for myotonia than I have done previously, even if they do not report symptoms

c. I will introduce more structured ways of measuring myotonia (e.g., qualitative interviews and quantitative measures) 

d. It seems myotonia is more clinically relevant for DM1 than I thought, and I will pay more attention to it

e. It seems myotonia is more clinically relevant for DM1 than I thought, and we should try to reach a consensus soon on how we address it

11. Having participated in the symposium, have the presentations changed your views on myotonia management in NDM?

a. I will not change anything in my clinical practice for myotonia in NDM

b. I will evaluate people with NDM more carefully for myotonia than I have done previously, even if they do not report symptoms

c. I will introduce more structured ways of measuring myotonia (e.g., qualitative interviews and quantitative measures)

d. It seems myotonia is more clinically relevant for NDM than I thought, and I will pay more attention to it

e. It seems myotonia is more clinically relevant for NDM than I thought, and we should try to reach a consensus soon on how we address it

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