University of British Columbia (UBC) researchers have launched a first-of-its-kind international online survey to get a better understanding of what information colorectal cancer patients need. UBC Assistant Professor Dr. Mary De Vera, a colorectal cancer survivor herself, is making a public plea for patients and survivors to participate in the survey to help identify important information patients need for survival.
March is Colorectal Cancer Awareness Month. Colorectal cancer is the second most common type of cancer in Canada, according to the Canadian Cancer Society. An estimated 26,800 Canadians were diagnosed with colorectal cancer in 2017, representing 13 per cent of all new cancer cases, while 9,400 Canadians died from the disease, representing 12 per cent of all cancer deaths. The BC Provincial Health Services Authority estimated that in 2018, 3720 British Columbians would be newly diagnosed with colorectal cancer, and 1,290 of them would die from it.
Despite the cancer’s prevalence there is relatively little information available for patients currently undergoing treatment or survivors in complete remission. The CONNECT study needs more participants in order to fully understand specific information needs, the most effective medium and best timing for patience to receive information. Survey results will help inform the medical community and better support colorectal cancer survivors and patients.
“There is ample information to support patients who are diagnosed with breast, prostate, lung and other forms of cancer, however, there is very little readily available information for those who have colorectal cancer,” says Dr. De Vera, who launched the study late last year. “We have had a good response internationally to the survey, however, with less than 200 Canadian respondents, we need more Canadians to help identify what type of information patients need and the best way to get that information.”
A 2008 study compared information available to breast, prostate and colon cancer patients respectively and found that there was far less information available to colon cancer patients. For example, a patient performing a Google search for information on breast cancer would find over 50 million hits, where a colon cancer patient would find about 1.5 million hits.
De Vera’s personal journey made her realize the lack of information available to patients with colorectal cancer. She was diagnosed with the cancer in 2016 at just 36 years old. As a mother of two young girls, and with a promising career in epidemiology ahead of her, the diagnosis was very-much unexpected. She would spend the next year undergoing cancer treatment including five weeks of chemoradiation, two major surgeries, a temporary ileostomy, and four months of chemotherapy.
“I was a young mother and was supposed to be returning to work after a shortened mat leave with my second daughter when I was diagnosed,” says De Vera. “While undergoing treatment, I found it difficult to find information on the disease, the treatment, the side effects and tips for transitioning back into real life. I would go online and look for any information I could find, and that’s when I realized there was a lack of information for colorectal cancer patients undergoing treatment.”
Launched November 15, 2018 and running through March 2019, results from the CONNECT study are starting to filter in, with nearly 1,000 respondents but less than 200 from Canada.
De Vera, who has spent much of her medical career researching different diseases, says she is hoping to use her own personal health experience to help others in the same situation. She says that anyone who has ever been diagnosed with colon or rectal cancer (current patients and survivors) and is above the age of 18 years old can take part in the online study.