Survey for Priority Setting in Understanding Long-Term Effects of Cancer Treatments

Earlier this year, the Canadian Institutes of Health Research – Institute of Cancer Research (CIHR-ICR) launched its Research Priority Plan 2024-2029 – Amplifying Impact: Leveraging Cancer Research to Enhance the Health of Canadians. We are now setting research priorities with the goal of reducing or preventing the side effects of cancer treatments and improving the quality of life after treatment ends. We know very little about why some cancer survivors experience long-term side effects, who is most affected, and how severe these effects are.

Every cancer survivor’s experience is unique. We want to hear from people with lived or living experience to better understand the symptoms and challenges that matter most after treatment ends.

CIHR-ICR has developed a survey to capture your feedback. All survey questions are optional. Your responses are anonymous and will be used to guide our future research priorities in cancer survivorship. Data will be stored securely and shared only in summary form.

Please complete the survey by January 31, 2025. If you have any questions, please contact CIHR-ICR at cihr.icr@uhn.ca.

Question Title

* 1. Please rate the following symptoms and challenges^† based on their importance to you.

For more information on the side effects listed, please visit the Canadian Cancer Society website.

	Not important	Slightly important	Neutral	Moderately important	Very important
Cognitive impairment (e.g., memory problems, learning new things, concentrating, making decisions)	Cognitive impairment (e.g., memory problems, learning new things, concentrating, making decisions) Not important	Cognitive impairment (e.g., memory problems, learning new things, concentrating, making decisions) Slightly important	Cognitive impairment (e.g., memory problems, learning new things, concentrating, making decisions) Neutral	Cognitive impairment (e.g., memory problems, learning new things, concentrating, making decisions) Moderately important	Cognitive impairment (e.g., memory problems, learning new things, concentrating, making decisions) Very important
Fatigue which does not recover after rest	Fatigue which does not recover after rest Not important	Fatigue which does not recover after rest Slightly important	Fatigue which does not recover after rest Neutral	Fatigue which does not recover after rest Moderately important	Fatigue which does not recover after rest Very important
Fibrosis (organ or body part develops too much scar tissue, making it stiff and less able to work properly)	Fibrosis (organ or body part develops too much scar tissue, making it stiff and less able to work properly) Not important	Fibrosis (organ or body part develops too much scar tissue, making it stiff and less able to work properly) Slightly important	Fibrosis (organ or body part develops too much scar tissue, making it stiff and less able to work properly) Neutral	Fibrosis (organ or body part develops too much scar tissue, making it stiff and less able to work properly) Moderately important	Fibrosis (organ or body part develops too much scar tissue, making it stiff and less able to work properly) Very important
Hearing loss	Hearing loss Not important	Hearing loss Slightly important	Hearing loss Neutral	Hearing loss Moderately important	Hearing loss Very important
Heart damage	Heart damage Not important	Heart damage Slightly important	Heart damage Neutral	Heart damage Moderately important	Heart damage Very important
Infertility	Infertility Not important	Infertility Slightly important	Infertility Neutral	Infertility Moderately important	Infertility Very important
Joint, muscle or bone changes (e.g., pain, stiffness, reduced range of motion, osteoporosis)	Joint, muscle or bone changes (e.g., pain, stiffness, reduced range of motion, osteoporosis) Not important	Joint, muscle or bone changes (e.g., pain, stiffness, reduced range of motion, osteoporosis) Slightly important	Joint, muscle or bone changes (e.g., pain, stiffness, reduced range of motion, osteoporosis) Neutral	Joint, muscle or bone changes (e.g., pain, stiffness, reduced range of motion, osteoporosis) Moderately important	Joint, muscle or bone changes (e.g., pain, stiffness, reduced range of motion, osteoporosis) Very important
Lung damage	Lung damage Not important	Lung damage Slightly important	Lung damage Neutral	Lung damage Moderately important	Lung damage Very important
Lymphedema (swelling of part of the body due to a buildup of fluid)	Lymphedema (swelling of part of the body due to a buildup of fluid) Not important	Lymphedema (swelling of part of the body due to a buildup of fluid) Slightly important	Lymphedema (swelling of part of the body due to a buildup of fluid) Neutral	Lymphedema (swelling of part of the body due to a buildup of fluid) Moderately important	Lymphedema (swelling of part of the body due to a buildup of fluid) Very important
Metabolic issues (e.g., weight gain, high blood pressure, changes in appetite)	Metabolic issues (e.g., weight gain, high blood pressure, changes in appetite) Not important	Metabolic issues (e.g., weight gain, high blood pressure, changes in appetite) Slightly important	Metabolic issues (e.g., weight gain, high blood pressure, changes in appetite) Neutral	Metabolic issues (e.g., weight gain, high blood pressure, changes in appetite) Moderately important	Metabolic issues (e.g., weight gain, high blood pressure, changes in appetite) Very important
Nerve problems (e.g., numbness)	Nerve problems (e.g., numbness) Not important	Nerve problems (e.g., numbness) Slightly important	Nerve problems (e.g., numbness) Neutral	Nerve problems (e.g., numbness) Moderately important	Nerve problems (e.g., numbness) Very important
Oral changes (e.g., taste changes, dry mouth, difficulty swallowing, speech changes)	Oral changes (e.g., taste changes, dry mouth, difficulty swallowing, speech changes) Not important	Oral changes (e.g., taste changes, dry mouth, difficulty swallowing, speech changes) Slightly important	Oral changes (e.g., taste changes, dry mouth, difficulty swallowing, speech changes) Neutral	Oral changes (e.g., taste changes, dry mouth, difficulty swallowing, speech changes) Moderately important	Oral changes (e.g., taste changes, dry mouth, difficulty swallowing, speech changes) Very important
Physical changes (e.g., loss of breasts, gynecomastia, penile changes)	Physical changes (e.g., loss of breasts, gynecomastia, penile changes) Not important	Physical changes (e.g., loss of breasts, gynecomastia, penile changes) Slightly important	Physical changes (e.g., loss of breasts, gynecomastia, penile changes) Neutral	Physical changes (e.g., loss of breasts, gynecomastia, penile changes) Moderately important	Physical changes (e.g., loss of breasts, gynecomastia, penile changes) Very important
Psychological changes (e.g., distress, depression, fear of recurrence)	Psychological changes (e.g., distress, depression, fear of recurrence) Not important	Psychological changes (e.g., distress, depression, fear of recurrence) Slightly important	Psychological changes (e.g., distress, depression, fear of recurrence) Neutral	Psychological changes (e.g., distress, depression, fear of recurrence) Moderately important	Psychological changes (e.g., distress, depression, fear of recurrence) Very important
Sexual dysfunction (e.g., changes in libido, pain during intercourse, erectile dysfunction)	Sexual dysfunction (e.g., changes in libido, pain during intercourse, erectile dysfunction) Not important	Sexual dysfunction (e.g., changes in libido, pain during intercourse, erectile dysfunction) Slightly important	Sexual dysfunction (e.g., changes in libido, pain during intercourse, erectile dysfunction) Neutral	Sexual dysfunction (e.g., changes in libido, pain during intercourse, erectile dysfunction) Moderately important	Sexual dysfunction (e.g., changes in libido, pain during intercourse, erectile dysfunction) Very important
Uncommon side effects (e.g., cold intolerance, orthostatic hypotension, long-lasting night sweats)	Uncommon side effects (e.g., cold intolerance, orthostatic hypotension, long-lasting night sweats) Not important	Uncommon side effects (e.g., cold intolerance, orthostatic hypotension, long-lasting night sweats) Slightly important	Uncommon side effects (e.g., cold intolerance, orthostatic hypotension, long-lasting night sweats) Neutral	Uncommon side effects (e.g., cold intolerance, orthostatic hypotension, long-lasting night sweats) Moderately important	Uncommon side effects (e.g., cold intolerance, orthostatic hypotension, long-lasting night sweats) Very important

^† 2024 American Association for Cancer Research Cancer Progress Report

Question Title

* 2. Are there other symptoms, challenges, or experiences you have faced after cancer treatment ended that you would like to share? Please describe how it has impacted your quality of life.

Page1 / 4

25% of survey complete.

Survey for Priority Setting in Understanding Long-Term Effects of Cancer Treatments

Question Title

* 1. Please rate the following symptoms and challenges† based on their importance to you.For more information on the side effects listed, please visit the Canadian Cancer Society website.

Question Title

* 2. Are there other symptoms, challenges, or experiences you have faced after cancer treatment ended that you would like to share? Please describe how it has impacted your quality of life.

* 1. Please rate the following symptoms and challenges^† based on their importance to you.

For more information on the side effects listed, please visit the Canadian Cancer Society website.