STUDY OF QUALITY OF LIFE IN PATIENTS AFFECTED BY LIPODYSTROPHY AND THEIR FAMILIES IN EUROPE AND LATIN AMERICA
RESEARCHERS:

1. Juan Carrión Tudela
2. José Jerez Ruiz
3. David Araujo Vilar
4. Antonio Bañón Hernández
5. Enrique Pastor Seller
6. Miguel Ángel Ruiz Diaz

CENTRE:

Association of Families and People Affected by Lipodystrophy AELIP

This document is intended to provide you with information on the research study in which you are invited to participate. The study has been approved by the Ethics Committee of the Universidad Autónoma de Madrid. If you have any questions or need clarification, do not hesitate to get in touch with us. Participation in this study is completely voluntary. You may choose not to participate or, if you accept, you may change your mind at any time, withdrawing your consent, with no obligation to explain the reason.

What is the purpose of the study?

The objective of this study is to understand the impact that psychosocial aspects have on the health/quality of life of people affected by Lipodystrophy and their families.
This collection of information will also be carried out in other organizations in different countries in Europe, in order to obtain a large sample of patients who can give a reliable picture of the impact of these diseases.

Why am I invited to participate?

You are invited to participate because you (or your child) has been diagnosed with a rare lipodystrophy.

What does my participation involve?

You will have to complete this survey, the link of which has been sent to you through the following communication channels: Email, WhatsApp or social networks. Your personal information will not appear in the survey. This study will take you approximately 10 minutes to complete.

What are the drawbacks?

Participating in the survey does not have any additional drawbacks.


Will I get any benefit from participating?

You are not expected to gain any direct benefits from participating in the study. The research is aimed at discovering unknown or unclear aspects of rare lipodystrophies. This information may be useful for others in the future.

Will I receive the information from the study?

Yes. If you wish, you will be sent a summary of the results of the study.

These results may have no clinical application or clear interpretation, so if you want to have them, you should discuss them with the doctors involved in the study.

Will the results of this study be published?

The results of this study will be sent to scientific journals for publication, but it will not be possible to send any data that could lead to the identification of participants and only aggregate information will be used. Information from the questionnaires will be disassociated from personal data using a random code so that it is not possible to identify the respondent.

All the information will be safeguarded by the researchers in accordance with the requirements of the Data protection Law (Organic Law 3/2018 of 5 December, on the Protection of Personal Data and Guarantee of Digital Rights) and will be destroyed after five years.

PATIENT CONSENT DOCUMENT *
Required
I also declare that: *
Required
Asociación Internacional de Familiares y afectados de Lipodistrofia AELIP
GENDER *
AGE *
Relative or affected person *
Type of Lipodystrophy *
Country of residence
1. In general, how would you rate your health? *
2. Compared to one year ago, how would you rate your health in general now? *
The following questions are about activities or things you might do during a typical day:
3. Does your current health limit you from doing strenuous activities such as running, heavy lifting, or participating in strenuous sports? *
4. Does your current health limit you from doing moderate effort activities, such as moving a table, cleaning the floor, playing catch, or walking for more than an hour? *
5. Does your current health limit you from picking up or carrying the weight of a bag of shopping? *
6. Does your current health limit you from going up several flights of stairs? *
7. Does your current health limit you from going up one flight of stairs? *
8. Does your current health limit you from bending or kneeling? *
9. Does your current health limit you from walking 4 or more kilometres? *
10. Does your current health limit you from walking between 200 and 900 metres? *
11. Does your current health limit you from walking 100 metres? *
12. Does your current health limit you from bathing or dressing yourself? *
13. In the last 4 weeks, have you had to cut down the amount of time you spent on work or everyday activities because of your physical health? *
14. In the last 4 weeks, have you accomplished less than you would have liked to because of your physical health? *
15. In the last 4 weeks, have you had to stop doing some tasks at work or in your everyday activities because of your physical health? *
16. In the last 4 weeks, have you had any difficulty performing your work or everyday activities (for example, you found it harder than usual) because of your physical health? *
17. In the last 4 weeks, have you had to cut down the amount of time you spent on work or everyday activities because of an emotional problem (such as feeling sad, depressed or anxious)? *
18. In the last 4 weeks, have you accomplished less than you would have liked to because of an emotional problem (such as feeling sad, depressed or anxious)? *
19. In the last 4 weeks, performed work or other activities less carefully than usual because of an emotional problem (such as feeling sad, depressed or anxious)? *
20. In the last 4 weeks, how much has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbours or other people? *
21. Have you experienced any bodily pain in the last 4 weeks? *
22. In the last 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? *
The following questions are about how you have felt and how things have gone over the last year. For each question, please give the answer that comes closest to the way you have been feeling.
23. How often did you feel full of pep? *
24. How often did you feel very nervous? *
25. How often did you feel so down in the dumps that nothing could cheer you up? *
26. How often did you feel calm and peaceful? *
27. How often did you have a lot of energy? *
28. How often did you feel downhearted and sad? *
29. How often did you feel worn out? *
30. How often did you feel happy? *
31. How often did you feel tired? *
32. How often has your physical health or emotional problems interfered with your social activities (like visiting friends, relatives, etc.)? *
Please say how true or false is each of the following statements for you.
33. I seem to get ill a little easier than other people. *
34. I am as healthy as anybody else. *
35. I expect my health to get worse. *
36. My health is excellent. *
SUPPLEMENTARY ANNEXES DONE BY THE AELIP RESEARCH TEAM
1. When did the first symptoms of lipodystrophy begin? *
2. How long did it take to receive a diagnosis after the first symptoms appeared? *
3. How often do you get medical checkups? *
4. How far do you live from your designated hospital? (Distance in km) *
5. Does your socioeconomic situation allow you to travel to your designated hospital at least once a year? *
6. Does your socioeconomic situation allow you to follow a balanced diet? *
7. Are you currently receiving any kind of treatment? *
8. If you answered Yes, please specify in what ways or how your life has changed since you started receiving it.
Clear selection
9. What areas of your life do you think have been affected by the disease? *
10. On a personal level, how would you rate the emotional and communicative support or contact that you receive from the people close to you? *
11. Have your personal and social relationships changed since you were diagnosed with Lipodystrophy? *
12. Have you ever needed information and guidance about the disease? *
13. Have you found a lipodystrophy consultant in your country? *
14. Specify, in order of priority from 1 to 5, the most urgent needs you need to satisfy within a period of 6 months, whether social, medical, economic, etc. *
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