September 23, 2020
What Men Told Us
CCSN’s prostate cancer survey report
In August 2018, CCSN employed a thoughtful and comprehensive national prostate cancer survey to help capture the patient, survivor and caregiver perspective on the prostate cancer journey from diagnosis to survivorship. The purpose of this survey was to help the prostate cancer community better understand the journey that prostate cancer patients, caregivers and survivors experience during their transition from diagnosis, to treatment, to follow-up and finally to survivorship. 137 responses were received, including 59 from prostate cancer patients in active treatment, 64 prostate cancer survivors, and 14 caregivers.
The CCSN Survey Report captured three overarching critical themes that resonated consistently throughout the Survey Results, provided by patients in active treatment, survivors of prostate cancer and caregivers alike. These were:
Assistance dealing with treatment-induced side effects
The first and most frequent theme to emerge was the respondents’ perceived lack of assistance dealing with treatment-induced side effects, specifically, as it relates to their sexual dysfunction and urinary incontinence. Both these side effects are life-changing , can reduce quality of life and increase anxiety if not properly dealt with in a timely and informed manner.
Provision of supportive care services
The provision of supportive care services was a recurring theme throughout the entire survey. Patients highlighted the need for supportive care to handle treatment-induced side effects, including accurate information regarding the management of the disease, and gaining access to emotional support or psychosocial services to help address or alleviate the fears, anxiety or distress surrounding prostate cancer therapies.
Timely access to treatment and information on the management of the disease, including side effects
The third theme revolved around the provision of information in a timely manner and access to treatment in an expedited fashion. Men felt they were not provided with enough information about prostate cancer treatment options from their healthcare professionals, while prostate cancer clinicians assumed patients had acquired enough information. Men felt ill at ease dealing with the treatment options, or rushed through their treatments, and felt unprepared for the severity and duration of treatment side effects, especially sexual dysfunction and urinary incontinence.
In conclusion, the CCSN Prostate Cancer Survey Report suggests respondents had unmet information and supportive care needs, including physical, psychological, sexual and the healthcare system itself. Providing men with supportive care services can bring them out of a sense of isolation and loneliness and provide them with the tools to speak about their disease with ease and confidence. They can then share information and exchange ideas and tips with others going through the journey.
All stakeholders must come together to support the prostate cancer patient and his caregiver in a meaningful and productive manner. The hope is that the CCSN Prostate Cancer Survey Report will serve as the impetus in helping to achieve this endeavour.
The What Men Told Us report can be accessed in English and French at https://survivornet.ca/wp-content/uploads/2020/08/PROSTATE-CANCER-REPORT.pdf, and Rapport du sondage sur le cancer de la prostate : une perspective canadienne at https://survivornet.ca/wp-content/uploads/2017/06/PROSTATE-CANCER-REPORT-F.pdf
About the Canadian Cancer Survivor Network
The Canadian Cancer Survivor Network (CCSN) is a Canadian charity and a leader in patient participation in healthcare, with a mandate to educate the public and policy makers about cancer survivorship, and engage in research on ways to alleviate barriers to optimal cancer care in Canada.
For further information or to arrange an interview, please contact Jackie Manthorne, President & CEO, Canadian Cancer Survivor Network, at 613-898-1871 or email@example.com.