TEMPLE BOOKLET SURVEY

Who are we?

We are a team of metabolic dietitians and are members of the British Inherited Metabolic Disease Group (BIMDG).

What is this about?

We have written a series of booklets about different metabolic conditions and you may have been given one of these.

What is the purpose of this survey?

We are interested to know what you think about these booklets and if they are useful to you. We would like you to complete the survey (one per family) as this would help us. Please answer the questions in relation to the TEMPLE (Tools Enabling Metabolic Parents LEarning ) booklet you were given.

What will we do with the results?

We will use them to develop and improve future booklets.

Question Title

* 1. Which of the following conditions does your baby/child have?

Phenylketonuria (PKU)

Maple Syrup Urine Disease (MSUD)

Glutaric aciduria type 1 (GA1)

Medium chain acyl-CoA dehydrogenase deficiency (MCADD)

Galactosaemia

Homocystinuria (HCU)

Tyrosinaemia

Other (please specify)

Question Title

* 2. What is the age of your child?

Up to 12 months

1-5 years

6-10 years

11 years and above

Question Title

* 3. Have you heard of TEMPLE teaching booklets?

Yes

Not sure

Question Title

* 4. When you found out about your child's condition, were you given one of the TEMPLE booklets?

Yes

If you answered No to the previous two questions you can stop the survey here. Thank you for your participation.

Question Title

* 5. Who gave you the TEMPLE booklet? Tick all those that apply

Dietitian

Doctor

Nurse

Other Health Professional

Patient Support Group

Website

Patient event

Question Title

* 6. The TEMPLE booklet helped me to understand my child's condition

Agree

Disagree

Not sure

Question Title

* 7. I or my dietitian have used the TEMPLE booklet to educate others. Tick all those that apply

Family members

Friends

Child minder

Creche

Nursery

School

After-school club

Health Visitor

Other Health Professional

Not used to educate

Not sure

Question Title

* 8. I would recommend the TEMPLE booklets for other families

Agree

Disagree

Not sure

Question Title

* 9. Which of the following statements do you agree with?

The booklet was easy to read

The booklet was confusing

The pictures and diagrams were helpful

The booklet contained about the right amount of information

I learnt something new from the booklet

Other (please specify)

Question Title

* 10. If you have any other ideas to help us improve TEMPLE, please let us know in the box below.

We would like to thank you for completing this survey.

TEMPLE BOOKLET SURVEY

Question Title

* 1. Which of the following conditions does your baby/child have?

Question Title

* 2. What is the age of your child?

Question Title

* 3. Have you heard of TEMPLE teaching booklets?

Question Title

* 4. When you found out about your child's condition, were you given one of the TEMPLE booklets?

Question Title

* 5. Who gave you the TEMPLE booklet? Tick all those that apply

Question Title

* 6. The TEMPLE booklet helped me to understand my child's condition

Question Title

* 7. I or my dietitian have used the TEMPLE booklet to educate others. Tick all those that apply

Question Title

* 8. I would recommend the TEMPLE booklets for other families

Question Title

* 9. Which of the following statements do you agree with?

Question Title

* 10. If you have any other ideas to help us improve TEMPLE, please let us know in the box below.We would like to thank you for completing this survey.

* 10. If you have any other ideas to help us improve TEMPLE, please let us know in the box below.

We would like to thank you for completing this survey.