Article Figures & Tables
Figures
- Figure 1:
Steps in priority-setting partnership for early-stage colorectal cancer. Adapted, with permission, from James Lind Alliance: How does a JLA PSP work? (https://www.jla.nihr.ac.uk/about-the-james-lind-alliance/downloads/JLA-PSP-process-final.pdf).
Tables
Characteristic Phase of study; no. (%) of participants Initial survey
n = 185*Interim prioritization
n = 25Final meeting
n = 20Type of participant Patient 44 (45) 13 (52) 10 (50) Caregiver 16 (16) 2 (8) 3 (15) Advocacy group member 7 (7) 3 (12) 2§ Other 5 (5) 0 Health professional 26 (27) 7 (28) 7 (35) Nurse 12 (46) 2 (29) 2 (29) Surgeon 1 (4) 0 0 Medical oncologist 6 (23) 3 (43) 5 (71) Radiation oncologist 1 (4) 0 0 Pharmacist 1 (4) 0 0 Other 5 (19) 2 (29) 0 Age, yr 18–29 4 (4) 1 (4) 0 30–39 7 (7) 0 4 (20) 40–49 19 (19) 3 (12) 6 (30) 50–59 29 (30) 9 (36) 8 (40) 60–69 27 (28) 9 (36) 1 (5) 70–79 11 (11) 0 1 (5) ≥ 80 1 (1) 2 (8) 0 Prefer not to say 0 1 (4) 0 Sex Male 39 (40) 9 (36) 8 (40) Female 59 (60) 16 (64) 12 (60) Ethnicity White 93 (95) 23 (92) 17 (85) South Asian 2 (2) 1 (4) 3 (15) Mixed 1 (1) 0 Prefer not to say 2 (2) 1 (4) 0 Colorectal cancer stage n = 44 n = 13 n = 10 I 9 (20) 0 0 II 8 (18) 4 (31) 3 (30) III 27 (61) 8 (62) 6 (60) IV 0 1 (8) 1 (10) Time since diagnosis, yr 1–5 26 (59) 7 (54) 3 (30) 5–10 12 (27) 4 (31) 5 (50) > 10 6 (14) 2 (15) 2 (20) Place of residence n = 98 n = 25 n = 20 British Columbia 6 (6) 0 1 (5) Alberta 46 (47) 16 (64) 10 (50) Saskatchewan 3 (3) 0 0 Manitoba 11 (11) 0 0 Ontario 21 (21) 4 (16) 5 (25) Quebec 5 (5) 5 (20) 3 (15) Atlantic† 6 (6) 0 1 (5) Rural‡ 10 (11) 5 (20) 3 (15) Urban‡ 61 (62) 20 (80) 17 (85) Rurality data missing 27 (28) 0 0 ↵* Only 98 participants provided demographic information.
↵† The Atlantic region consists of Prince Edward Island, Nova Scotia, Newfoundland and Labrador, and New Brunswick.
↵‡ Rural was defined as not urban. Urban was defined as core population density of 1000 people per square mile and population density of surrounding area of 500 people per square mile (1 mi2 = 2.6 km2).
↵§ Advocacy group members at the final meeting were also patients with colorectal cancer.
- Table 2:
Categories of research questions, with examples of raw data and initial indicative question from initial survey
Category Raw data Initial indicative question Diagnosis “We typically test for colorectal cancer in men at age 50. Can we change this to 45 to catch this cancer at an even earlier stage?” “Colonoscopy should be started at age 40 not 50, I had cancer at 45.” What is the feasibility and necessity of beginning screening at an early age, given the rise in CRC in those under age 50? Treatment “What about holistic methods of treating cancer?” “Why is change of diet not included in treatment?” What is the evidence for complementary and alternative treatments? Treatment complications or adverse effects “How can peripheral neuropathy be better treated?”
“Is there better ways to treat neuropathy? Hands are an important part in everyday life, to disregard the devastating events chemo can play with the use of our hands is very upsetting to me personally.”What can be done to treat peripheral neuropathy in the short and long term? Monitoring for recurrence “How is the impact concerning different lifestyles to prevent recurrence?”
“What can I do other than scheduled colonoscopies?”What are the most effective ways to prevent recurrence? Rehabilitation “What about chronic bowels symptoms? What are the best ways to improve bowel problems?” What are the best methods for providing rehabilitation to improve chronic bowel symptoms? Quality of life “Finances are running out, because of the neuropathy I am no longer able to work. I am looking for therapy to help with the pain management but nothing is covered.”
“The chemo caused it and should be covered.”What is the long-term financial toxicity of a CRC diagnosis, and how can patients and their families be better supported financially? Lifestyle factors “How do I sort through all the information about healthy diet?” “There is a lot of dis-information on the internet about what helps and by how much.” What is the best diet to follow, and how can this information be systematically provided to patients and their families? Support for patients “Are there internet sources of support for patients?”
“How can patients learn about all the supports that are available?”What is the best way to provide information/ education about supports available to CRC patients and their families? Support for caregivers “Are there courses that caregivers take to teach them basic skills in caring for the patient (I am thinking very specifically of assisting patients with things like removing colostomy bag, etc.)?”
“Where can they (caregivers) go for support?”How can education and access to support for caregivers be improved? Prevention “Why isn’t there more education on this (prevention) and why aren’t there more campaigns about prevention and risk factors?” How can people be better informed about the risk factors for colon cancer? Miscellaneous “My concerns are more related to knowledge translation, policy and practice guidelines. Why did I have to learn about cancer fatigue video from McMaster from my friends instead of my doctor?” What are the policy and practice guidelines that are needed to improve the patient experience during the diagnosis phase? Note: CRC = colorectal cancer.
In this issue
Article tools
Respond to this article
