Background/Purpose
Current medical decisions are primarily determined by physician opinions and clinical evidence. However, single clinic visits may not fully address how treatments may impact the daily life of patients. This issue is magnified in Myasthenia Gravis (MG) patients where varying levels of disease severity are experienced throughout the day, which can only be truly addressed through the patient’s perspective. Therefore, it is important that the patient’s opinion be included during the medical decision-making process. However, there is limited information regarding the treatment preferences of MG patients
The purpose of this survey is to learn more about the treatment preferences of patients with MG and better understand what influences patient decisions when choosing between two different MG treatments. For example, we want to better understand, from your perspective as a patient, if self-injected treatments are more preferred than hospital treatments. Additionally, we want to learn if there is a minimal amount of symptoms where most patients feel satisfied with their health while on a treatment.
You are being invited to participate because you are a patient with Myasthenia Gravis.
Study Design & Procedures
All participants will complete a questionnaire. We will ask you to answer a few demographic questions (e.g. age) and some questions regarding your myasthenia (e.g. disease duration). We will also ask you a set of questions, which will ask you to choose your preferred treatment between two hypothetical options.
Compensation & Benefits
You will not be paid for participating in this study. Information learned from this study might benefit patients with Myasthenia in the future.
Risks
There are no medical risks associated with this study. Some questions may make you feel uncomfortable.
Confidentiality
We will not collect any personal identifying data such as date of birth or IP address. Only the researchers associated with the study will have access to the data collected through the survey.. Data will not be stored on the online server that hosts this survey. Representatives of the University Health Network (UHN) including the UHN Research Ethics Board may come to the hospital to look at the study records to check that the information collected for the study is correct and to make sure the study is following proper laws and guidelines.
These individuals have completed privacy training and signed confidentiality agreements and/or are required by law to keep your information confidential.
Whether on-site or remotely, UHN makes all efforts to ensure that your information is shared in a way that is secure and private (encrypted). However, any electronic communication carries some risk of third parties gaining unauthorized access to information.
The study doctor will keep the study data in a secure and confidential location for 10 years.
You will not be named in any reports, publications, or presentations that may come from this study.
Voluntary Participation:
Your participation in this study is voluntary. You may decide not to be in this study, or to be in the study now, and then change your mind later. You may leave the study at any time without affecting your care.
You may refuse to answer any question you do not want to answer by skipping the question.
Withdrawal from the study
If you leave the study, the information that was collected before you left the study will still be used in order to help answer the research question. No new information will be collected without your permission.
Conflict of Interest
The researchers have an interest in completing this study. This should not affect your decision to participate.
Questions about the study
If you have any questions, don’t hesitate to contact us by phone or email. Please note that communication via e-mail is not absolutely secure. Thus, please do not communicate personal sensitive information via e-mail.
If you have any questions about your rights as a research participant or have concerns about this study, call the Chair of the University Health Network Research Ethics Board (UHN REB) or the Research Ethics office number at 416-581-7849. The REB is a group of people who oversee the ethical conduct of research studies. The UHN REB is not part of the study team. Everything that you discuss will be kept confidential.
By answering this survey, you are providing implied consent for participating in this study, meaning that by completing the survey, you are consenting to participate. If you do not wish to participate, please do not complete the survey.
Thank you for your help completing this study!