Leukodystrophy

This is a questionnaire to understand the needs of patients with leukodystrophy and their families. Thank you for taking part of this survey, we really value your opinion and time to help us help you.

Create an image of a diverse group of people with different backgrounds, some in medical consultations and others sharing experiences, set in a warm and supportive community environment related to health and wellness.

Understanding Leukodystrophy: A Patient Survey

Welcome to our survey on leukodystrophy! We aim to gather insights on the experiences and needs of patients and their families affected by this condition. Your feedback is invaluable in helping us improve support and resources.

Through this survey, you will have the opportunity to express your thoughts on:

The impact of leukodystrophy on daily life
Your experiences during the diagnosis journey
Connecting with other patients and researchers

23 Questions6 MinutesCreated by CaringHeart512

How do you agree or disagree on the below points:

	Strongly Agree	Agree	Disagree	Strongly Disagree
1. I feel that the condition has an impact on my personal life
2. I feel that the condition has an impact on my educational/professional development
3. I felt that the diagnosis process was easy overall
4. I went through numerous assessments/tests during the diagnosis process
5. I feel that having someone to coordinate tests and appointments would have been beneficial
6. I would like to have a passport/summary to avoid having to repeat the same story many times
7. I know others suffering from the same condition
8. Connecting with others going through the same experience would make me feel less isolated
9. I would like to use an application/web system to connect with others going through the same experience
10. I feel that a buddy/mentor system will be helpful for managing my condition
11. I feel that a connection between the patients and research is missing
12. I would like to have a space to connect with researchers
13. I would like to have access to resources with scientific/clinical content about my condition
14. I would like to have an app/web system to learn more about my condition
15. I feel my preferences/expectations are taken into account by my clinical team

Have you connected with other patients with leukodystrophy or their relatives through online platforms or websites?

Yes

If you answered yes to the previous question, specify which platform/website:

What do you think could make a big difference to people living with this condition?

Would you pay for an online service to help in the areas described in the questionnaire? Please write yes or no, and specify which area/s in an affirmative case

If you answered yes to the previous question, how much would you pay for a month in GBP?

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