Living with a Meningioma |
Principal Investigator: Dr. Michael Cusimano, MD, MHPE, FRCSC, PhD, FACS
Division of Neurosurgery, St. Michael's Hospital, Unity Health Toronto
Professor of Neurosurgery, Education, and Public Health, University of Toronto
Please read below before beginning the survey:
Introduction
Quality of life (QoL) is an individual's satisfaction with their general health, well-being, and life circumstances, a concern particularly relevant for patients affected by meningioma. We are currently enhancing our meningioma-specific quality of life questionnaire, known as the "MQoL-Q", by refining and streamlining the questionnaire items for greater precision. We invite you to be a part of this important process by sharing your insights and experiences. Your valuable perspectives will contribute significantly to the ongoing improvement of the MQoL-Q, ensuring its relevance and accuracy for individuals affected by meningioma.
Purpose of the Study
The purpose of this study is to investigate if we can improve the treatment of patients with meningioma by accomplishing 3 goals: 1) to develop and validate a disease specific questionnaire to comprehensively evaluate QoL in meningioma patients (the MQoL-Q); 2) understand patient perspectives on meningioma and research approaches; 3) to create diagnostic 'profiles' to improve management of meningiomas (compiling symptoms and disease characteristics that will facilitate in the identification of meningioma).
Currently, there is little research on patients' experiences with meningioma. Understanding symptom burden (the number of symptoms a patient is experiencing, the severity of symptom(s), and the symptom's impact on other aspects of a patient's life), psychosocial effects (the combined effect of psychological and social life factors on a patient's well-being), and other aspects of the disease would be helpful in improving the care of patients in meningioma.
Description of the Study
If you agree to participate, you will be asked to complete an online survey comprised of a set of questionnaires. The survey can be completed independently by you, or with the assistance of an informal caregiver (e.g., family member/friend) or healthcare provider if needed. Your input is key for refining the MQoL-Q, ensuring it addresses the specific challenges faced by individuals affected by meningioma and their loved ones. The questionnaires will ask specific questions about your tumour and its effect on your life, QoL issues, symptom burden, clinical characteristics, and your perspectives on providing information about your personal QoL and health. Please note, the questions may seem similar or repetitive between questionnaires, as we would like to compare the results of the MQoL-Q with other QoL questionnaires to ensure the MQoL-Q is effective at measuring QoL.
By examining the responses, we will determine what QoL issues are most important to you, which will contribute towards the development of our disease-specific, patient-centered tool that assesses the effects of meningioma. The information you provide is for research purposes only. Some of the questions are personal. You can choose not to answer questions if you wish.
Total time to complete the survey: 25 minutes to 1 hour.
Potential Risks or Discomforts
The risks or harms of participating in this study are minimal. You may refuse to answer questions or stop the survey at any time if you experience any discomfort.
Potential Benefits
You will not benefit directly from participating in this study, although the information gained from this research may help improve the assessment of QoL in meningioma patients. This could allow us to better understand how meningioma affects QoL, which may lead to improvements in the medical care and QoL of patients with this condition.
Confidentiality and Privacy
If you decide to participate in this study, the research team will only collect the information needed for this study. Personal information that will be collected include your age bracket (e.g. 18-24, 25-34, etc.), gender, and details of your meningioma (e.g. tumour location, treatment(s) pursued, calendar year in which treatment(s) were pursued, etc.).
Some of the information we are collecting may be considered sensitive, such as race/ethnicity and income. You may choose not to answer these if you wish. We are collecting this information to better understand the diversity of our study participants. By analyzing this information, we can identify any disparities or unique health concerns within different demographic groups. Your participation and the information you provide are invaluable in advancing our understanding of QoL in meningioma patients and promoting health equity.
We do not want to identify your answers as belonging to you. We have not asked for your name or any direct identifiers within this survey. If the results of the study are published, your identity will remain confidential. The information collected during this study will be used in analyses and may be published/presented to the scientific community at meetings and journals. The study investigators will keep your study records securely stored for 5 years following the publication of the study, or 10 years after the completion of the study - whichever comes first.
If you are interested in participating in further phases of the study and completing subsequent versions of the survey, you will be given the option at the end of the survey to provide your e-mail address on a separate form, so that the research team can get in contact with you at a later time. If you choose to provide your e-mail address, it will be stored separately from your survey responses in our databases. The survey will ask you to create and enter a self-generated identification code.
REDCap (Research Electronic Data Capture) is a secure state-of-the-art web application for building and managing online surveys and databases used primarily by the research community, including universities and healthcare institutions. Data collected using REDCap resides on servers and infrastructure determined by the institution or organization employing the REDCap platform. It will only be used for research purposes. Institutions using REDCap must comply with appropriate local and federal privacy legislation. Your data is treated as private. All attempts are made to secure the data from outside interception.
In providing consent to participate in this survey as part of our research study, if you are acting as a caregiver on behalf of an individual unable to provide informed consent themselves, you hereby affirm that you are legally authorized to do so in accordance with the applicable local privacy laws and regulations governing the protection of personal information. By submitting this form, you acknowledge and declare that your consent is given in full compliance with these laws, ensuring the individual's rights and privacy are safeguarded throughout their participation in the study.
Costs/Compensation for Participation
Participation in this study will not involve any additional costs to you. There is no compensation for participating in this study.
Participation and Withdrawal
You can choose to end your participation in this research (called withdrawal) at any time without having to provide a reason, and will not impact your relationship with any of the groups involved with this research project. If you choose to withdraw from the study, you are encouraged to contact the research team. You may withdraw your permission to use information that was collected about you for this study at any time by letting the research team know. However, this would also mean that you withdraw from the study.
Funding: None.
Who do participants contact for questions?
If you have questions about taking part in this study, you can talk to the research team at braintumors@smh.ca
Please note that email is not secure. Emails can be intercepted, viewed, changed or saved by others. Only send information to this address that you do not feel is sensitive.
This study has been approved by the Unity Health Toronto Research Ethics Board (REB). If you have any questions regarding your rights as a research participant, you may contact the Unity Health Toronto REB at 416-864-6060 ext. 2557 during regular business hours (i.e., 9 AM - 5 PM EST).