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Online Questionnaire for patients, caregivers and clinicians 

Study about patient’s information needs in Autoimmune Encephalitis 

Study Questionnaire

 

Patient, Caregiver, and Clinician input is needed!

Ana Vasconcelos, is a Ph.D. student at the University of Coimbra, in Portugal. She is a scientific illustrator, and science communicator,  The aim in her research is to investigate how to design information about Autoimmune Encephalitis that will help patients and their families better understand their medical condition. For that, she needs the help of Autoimmune Encephalitis patients, recovered patients, caregivers, and clinicians. 

Are you an Autoimmune Encephalitis patient, a recovered patient, or a caregiver? 

We kindly ask you to complete this online questionnaire about your information needs – what you find challenging and important to understand about Autoimmune Encephalitis as well as the difficulties you face while searching for and accessing information about your medical condition.

What is the aim of this study?

This study is part of a doctoral project about making information easier to understand for people dealing with Autoimmune Encephalitis (AE) entitled “Information Design as a Vector in science communication: A Co-design Approach involving Autoimmune Encephalitis Patients, Their Families, scientists, and Medical professionals.” We want to investigate how to design information that helps patients and their families to better understand their medical condition.

 

For whom is this questionnaire and what is its goal?

This questionnaire is directed to patients, recovered patients, and caregivers who are living or have lived with a diagnosis of Autoimmune Encephalitis. We want to understand the information that patients and family members need and what is important for them to understand about AE. This needs assessment includes their views on AE-related information: what is difficult to understand; what is important within this information; and the types of information sources used to search for AE.

 

What is the importance of this questionnaire?

The answers to this questionnaire will help us understand what patients and caregivers want and need to know about their medical condition. This will help us decide what topics to represent in illustrations for educational materials about AE. We will use this information in the next steps of our research, where we work with doctors, patients, and caregivers to create these illustrations together.

Are you a clinician with experience in diagnosing and/or following up patients with Autoimmune Encephalitis? 

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We kindly ask you to complete this online questionnaire to gather your views on topics related to communicating information to patients with Autoimmune Encephalitis – the challenges you face and your opinion on the topics more important and more difficult to communicate.

Thank you in advance for your help in achieving the main goal of this project: to design information that promotes communication and health literacy about Autoimmune Encephalitis!

For whom is this questionnaire and what is its goal?

This questionnaire is directed to clinicians who have experience in diagnosing and/or following up patients with Autoimmune Encephalitis. It aims to understand the clinicians’ point of view on patients’ (and caregivers’) needs for information about AE. Thus, this questionnaire seeks to gather clinicians’ insights on topics including the difficulties of patients and caregivers in accessing and understanding AE-related information; challenges of clinicians in communicating AE-related information; and their opinion on the AE-related topics that are more important to be communicated.

 

What is the importance of this questionnaire?

The results of this questionnaire will contribute to understanding the perspectives of clinicians about what patients and caregivers want and need to know about their medical condition. This will help us to define topics about AE to be visually represented in educational materials. This information will be crucial to incorporate in the next steps of this research which will include the co-design of these materials together with clinicians, patients, and caregivers.

At the end of the project, IAES will disseminate the results and the produced illustrations.

There is no fixed timeline determining the end of questionnaire submissions.  The goal is to receive enough responses for consensus opinions. 

dissemination_questionnaires

We invite you to spread awareness of this important study on your social media platforms. Copy and paste (or save) this visual and include the link to this page. This advocacy act will help this scientific illustrator, science communicator, and PhD student at the University of Coimbra, in Portugal further her research in answering the question: How to design information that helps patients and their families to better understand their medical condition.

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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