Online survey for adolescent and young adult cancer patients and survivors

ntre, Thunder Bay, Ontario). Only these individuals will have access to identifiable research data. These researchers have no conflicts of interest to disclose. To participate in the research, you would be asked to complete a one-time questionnaire. Email [email protected] to receive the questionnaire link. The questionnaire will ask for:

• Basic information about you, your cancer, and any formal therapy or support you may have received
• What you believe the key emotions, life issues, and needs of an adolescent or young adult cancer patient are
• Your life satisfaction, distress, emotions, stress, social support, and any uncertainty you might be experiencing
• Your quality of life, physical activity level, and the extent to which cancer is a significant part of your life
• Positive or negative life changes that have occurred since your diagnosis

Participation in this study is completely voluntary. All information collected is confidential. To participate, simply complete the questionnaire. The questionnaire is long, and has approximately 300 questions. It is estimated that it will take about 30 to 60 minutes to complete. Because of the questionnaire length, you have the option of starting the questionnaire and returning to it at a second point in time to finish. To say thank you for your time and your valuable feedback, at the end the questionnaire you will have the option of being entered into a random prize draw for one of three prizes: a personalized iPod nano in the colour of choice, a Kindle e-reader, or a $100 VISA gift card. At the end of the questionnaire, you will also be offered the opportunity to be contacted to participate in any follow-up research. This would mean receiving an email invitation, at which time you could decide to participate or not. This research is considered low risk, and is not expected to result in harm. However, it is noted that discussing sensitive topics such as your personal cancer experience may be intimidating and/or distressing. You can choose to stop or withdraw from the research at any time, or choose to skip questions you are not comfortable with. If answering the questions is distressful for you, please consider consulting reaching out for a psychological consult. Contact the Canadian Cancer Society (www.cancer.ca 1-888-939-3333), the American Cancer Society (www.cancer.org 1-800-227-2345), or Liane Kandler ([email protected])for help finding psychosocial support resources in your area. There are no direct benefits to participating in the research, however your responses will help us to understand what adolescents and young adults with cancer are facing, and how resources and tools can be better tailored to meet your unique supportive care needs. This study has received ethics approval from Lakehead University and the Thunder Bay Regional Health Sciences Centre. This research was funded by a Doctoral Scholarship from the Canadian Institute of Health Research, awarded to Liane Kandler. For information on the study, to obtain a copy of the results, to withdraw from the research, or if you had any further questions, please contact Liane Kandler at [email protected]

If you have any concerns regarding your rights as a research participant or wish to speak to someone other than a research team member about this research project, you are welcome to contact any of the research boards that reviewed the application
1) Chair, Research Ethics Board. Thunder Bay Regional Health Sciences Centre. 980 Oliver Road, Thunder Bay, Ontario P7B 6V4. Tel: 807-684-6422; Fax: 807-684-5904. [email protected]
2) Office of Research Services, Lakehead University. 955 Oliver Road. Thunder Bay, Ontario. Phone (807) 343-8934. Fax (807) 346-7749
All research data will be kept at the Thunder Bay Regional Health Sciences Centre for 5 years. Thank you for taking the time to consider this research! Email [email protected] to receive a link to the questionnaire.