DUCHENNE MUSCULAR DYSTROPHY (DMD)
CAREGIVER QUALITY OF LIFE SURVEY

Introduction

Why are we asking you to do this survey?

The survey aims to increase understanding of your perspective as a caregiver for a child/children diagnosed with Duchenne Muscular Dystrophy (DMD) by estimating the impact on your quality of life. The results of this survey may be used in a conference or for publication in scientific journals.

We are interested in every caregiver’s perspective. If you and another person care for the same child/children, please complete the survey individually without the help from the other person.

Will I be paid for my participation in this survey?

You will not be paid to answer this survey. Participation is voluntary.

How long will it take to answer the questions?

The survey is divided into two sections (demographics and quality of life) and the questions will take about 10 minutes of your time.

What happens if I say no, I don’t want to be in the survey?

If your alternative is not to participate, there will be no penalty or loss of benefits to which you are otherwise entitled.

What happens if I say yes, but change my mind later?

You can stop taking part at any time without giving a reason. There will be no penalty or loss of benefits to which you are otherwise entitled.

Who will see my answers?

The only people allowed to see your answers will be the people who work on the survey. Your answers will remain anonymous as we do not collect any information that can identify you.

Every possible step is taken to ensure confidentiality; however, there is always a minimal risk that someone may see your answers. Whilst you personally are unlikely to benefit directly from participating in the survey, your participation will lead to increased knowledge about DMD.

What do I do if I want to be in the survey?

Please review and confirm the following statements before completing the form:

By selecting YES below you are confirming you have read, understood, and accept the statements and agree to take part in the study based on these statements.

By participating in the survey, you acknowledge and confirm you understand that all survey materials are proprietary to the survey owner and must not be used for any other purpose than participation in the survey or disclosed to any third party without the express written permission of the survey owner.

Select YES in the box below to say you have read, understand, and accept the statements and agree to take part in the survey based on these statements.

YES


Caregiver’s Demographic Profile

This section aims to define the study population (caregivers) by collecting data on their demographic profile.

All responses provided are completely anonymous and confidential.

For questions 1 through 5, answers pertain to you (caregiver). For questions 6 through 8, answers pertain to your child/children with a diagnosis of DMD.

1)

What is your age range?

2)

What is your assigned sex at birth?

3)

What is your highest education level?

4)

What is your employment status?

5)

Which province/territory do you live in?

6)

What is the age range of the child with DMD you care for?

6)

If you have more than one child with DMD, what is the age range of the second child with DMD you care for?

6)

If you have more than two children with DMD, what is the age range of the third child with DMD you care for?

7)

What would best describe the health state of the child with a DMD diagnosis?
Walk is defined as can walk for 10 meters.
Stand from supine is defined as getting up from the floor using as little support as possible.
Stand is defined as standing up tall.

7)

If you have more than one child with DMD, what would best describe the health state of the second child with a DMD diagnosis?
Walk is defined as can walk for 10 meters.
Stand from supine is defined as getting up from the floor using as little support as possible.
Stand is defined as standing up tall.

7)

If you have more than two children with DMD, what would best describe the health state of the third child with a DMD diagnosis?
Walk is defined as can walk for 10 meters.
Stand from supine is defined as getting up from the floor using as little support as possible.
Stand is defined as standing up tall.

8)

What would best describe the ventilation support need of the child with a DMD diagnosis?

8)

If you have more than one child with DMD, what would best describe the ventilation support need of the second child with a DMD diagnosis?

8)

If you have more than two children with DMD, what would best describe the ventilation support need of the third child with a DMD diagnosis?

EQ-5D-5L

Health Questionnaire

English version for Canada

Please tap the ONE box that best describes your health TODAY.

MOBILITY

Please tap the ONE box that best describes your health TODAY.

SELF-CARE

Please tap the ONE box that best describes your health TODAY.

USUAL ACTIVITIES (e.g. work, study, housework, family or leisure activities)

Please tap the ONE box that best describes your health TODAY.

PAIN / DISCOMFORT

Please tap the ONE box that best describes your health TODAY.

ANXIETY / DIPRESSION

  • We would like to know how good or bad your health is TODAY.
  • This scale is numbered from 0 to 100.
  • 100 means the best health you can imagine.
    0 means the worst health you can imagine.
  • Please tap on the scale to indicate how your health is TODAY.
The best health you can imagine Slider The worst health you can imagine
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Disclaimer

This is a preview of the EQ-5D instrument. It demonstrates the text, questions and response options included in this version. This preview does not represent the final product and should not be used as an official EQ-5D instrument.

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