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Clinicians' Perspectives on Patient Information Needs in Autoimmune Encephalitis



Thank you for clicking on the link to answer this questionnaire!

Please read the following information carefully before deciding whether to participate.


What is the aim of this study?

This is a study in the scope of a doctoral project in the field of Visual Science Communication entitled "Information design as a vector in science communication: A co-design approach involving Autoimmune Encephalitis patients, their families, scientists, and medical professionals.” It seeks to understand how to design information to promote effective communication and health literacy about Autoimmune Encephalitis (AE), using a patient-centred approach.


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 understand 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.


Who is conducting this study?

This is part of a project of the PhD student Ana Vasconcelos ( of Doctoral Programme in Experimental Biology and Biomedicine from the Institute for Interdisciplinary Research, University of Coimbra, Portugal and from CNC-UC - Center for Neuroscience and Cell Biology, University of Coimbra and CIBB – Centre for Innovative Biomedicine and Biotechnology, University of Coimbra, to whom you may contact if you have additional questions about this research. This work is supervised by the researcher Sara Amaral (CNC-UC and CIBB) and co-supervised by the researchers Susana de Noronha (Centre for Social Studies of the University of Coimbra) and Rita Maldonado Branco (Research Institute for Design Media and Culture (ID+), University of Aveiro, Portugal). This work is funded by the Portuguese Foundation for Science and Technology.


Do I have to participate in this study?

Your participation in this study is voluntary and you may refuse to participate. If you decide to participate, you will have the right to access, change, delete, oppose, and limit the processing of your personal data or to withdraw from the study at any time, without any reprisals and/or need to justify the reason. To exercise these rights, you should contact the researcher responsible for this study, at the following email address:


How will my participation in this study be?

Your participation in this study consists of completing an online questionnaire, about your patients' needs for Autoimmune Encephalitis-related information. There are no right or wrong answers. If you accept to participate in this study, and after reading and accepting the informed consent, you can start to fill in the questionnaire. To do so, please click on “Next”. This questionnaire has an estimated completion time of 10 minutes. You can withdraw from the study at any time and for any reason by closing the questionnaire window. Participation in this study will be completely free, at no cost to the participant. This study does not provide financial compensation to participants. Your participation in the study does not include any risks for you.


How will my confidentiality be maintained?

Your responses and data will be strictly confidential, in accordance with applicable regulations and laws. All data will be uniquely identified with a code. The data collected will only be used for scientific research purposes and will be safe and secure on Limesurvey® (hosted by UC) and will not be kept beyond the time needed for the study objectives. Only the researchers responsible for this study will have access to the data. Privacy and data protection are in accordance with the General Data Protection Regulation (GDPR) – Regulation no. 58/2019 of 08 August.