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Evaluation of www.emergencyprotocol.net

Help us to improve the online emergency letter and our website www.emergencyprotocol.net!

Do you (or does a family member) have a liver glycogen storage disease (GSD) or fatty acid oxidation disorder (FAOD)? Or are you a professional who is interested in online generation of emergency letters? We need your help in understanding how the emergency letters and the website serves your needs.

This questionnaire will take 10 minutes of your time and your feedback is of tremendous value to us. If possible, we kindly ask that patients over 12 years of age complete this questionnaire at least together with the parent or carer. If the patient is 12 years of age or younger, we kindly ask the parent or carer to complete the survey. In the event that there are several GSD/FAOD patients per family, we kindly ask you to complete the questionnaire for each patient. Your answers will be stored and analyzed anonymously.

For more information, please send an email to info@stofwisselingsziekten.nl or visit our website.

A note on privacy
This survey is anonymous.
The record of your survey responses does not contain any identifying information about you, unless a specific survey question explicitly asked for it. If you used an identifying token to access this survey, please rest assured that this token will not be stored together with your responses. It is managed in a separate database and will only be updated to indicate whether you did (or did not) complete this survey. There is no way of matching identification tokens with survey responses.

	Always	Usually	Sometimes	Rarely	Never
Admission was via the emergency department	Always	Usually	Sometimes	Rarely	Never
Admission was directly at the ward (internal medicine/pediatrics)	Always	Usually	Sometimes	Rarely	Never
Admission was directly at the intensive care	Always	Usually	Sometimes	Rarely	Never
The healthcare professional had a copy of the emergency letter	Always	Usually	Sometimes	Rarely	Never
The metabolic expert was contacted	Always	Usually	Sometimes	Rarely	Never
The emergency letter was up to date	Always	Usually	Sometimes	Rarely	Never

	Always	Usually	Sometimes	Rarely	Never
Admission is via the emergency department	Always	Usually	Sometimes	Rarely	Never
Admission is directly at the ward (internal medicine/pediatrics)	Always	Usually	Sometimes	Rarely	Never
Admission is directly at the intensive care	Always	Usually	Sometimes	Rarely	Never
The patient has an up to date emergency letter	Always	Usually	Sometimes	Rarely	Never
The emergency letter is used	Always	Usually	Sometimes	Rarely	Never

The next couple of questions are about the use of the emergency letter and the website www.emergencyprotocol.net. On this page we first ask you to give us strong elements. On the next page we ask for points of improvement.

What are the strong elements of the emergency letter and/or www.emergencyprotocol.net?

Element 1

Element 2

Element 3

What are the elements of improvement of the emergency letter and/or www.emergencyprotocol.net?

Element 1

Element 2

Element 3

Please rate our website www.emergencyprotocol.net.

Choose one of the following answers

Very poor

Poor

Average

Good

Very good