Quality of life questions for patients with meningioma |
Study title: Toward optimizing the care of patients with meningioma: a data triangulation approach
5% |
Principal Investigator: Dr. Michael Cusimano, MD, MHPE, FRCSC, PhD, FACS
Division of Neurosurgery, St. Michael’s Hospital
Professor of Neurosurgery, Education, and Public Health, University of Toronto
Division of Neurosurgery, St. Michael’s Hospital
Professor of Neurosurgery, Education, and Public Health, University of Toronto
We are conducting a study where we are developing and validating a meningioma-specific quality of life questionnaire. We would like to invite you to participate in our study by completing this questionnaire. Your perspectives and experiences are important to us in developing a questionnaire specific to 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 quality of life (QOL) in meningioma patients; 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). QOL is an individual’s satisfaction with their general health, well-being, and life conditions.
Currently, little research has been done to examine patients’ and caregivers’ 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 provided with a questionnaire. The purpose of the questionnaire is to understand the quality of life issues relevant to meningioma patients and their families. The questionnaire will ask specific questions related to information about your tumour and its effect on your life, quality of life issues, symptom burden, clinical characteristics, and your perspectives on providing information about your personal quality of life and health.
Each questionnaire will take about 25 minutes – 1 hour to complete. By examining the responses, we will determine what quality of life issues are most important to you, and will contribute towards the development of a disease-specific, patient-centered instrument 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: 25 minutes – 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 questionnaire at any time if you experience any discomfort.
Potential Benefits
You will not benefit directly from participating in this study. The information gained from this research may be very important in finding new ways to manage meningioma. This may lead to improvements in the medical care and quality of life of patients with this type of disease.