Understanding Patient Experience with Bladder Cancer in Alberta

Understanding Patient Experience with Bladder Cancer in Alberta

By Susan Nguyen

Bladder cancer is the 5th most common cancer in Canada. It is one of the more persistent cancers with a high recurrence rate of 50-80% making it the most costly cancer to treat per patient because of the repeated surgeries, treatments and lifelong follow-up. There is a lot of clinical research about bladder cancer but little has been published to date about what a patient really experiences when going through a journey with this disease.

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“You have to beg, borrow and steal to get information.”

Bladder Cancer PaCER focus group participant

In 2016, Dr. Nimira Alimohamed, an oncologist with the Tom Baker Cancer Centre in Calgary, and Susan Nguyen, a PaCER researcher and two-time bladder cancer survivor, gave a presentation to the Alberta Health Services (AHS) Cancer Strategic Clinical Network (SCN). The purpose of the presentation was to obtain funding to contract PaCER researchers to do a study about what a bladder cancer patient’s experience is like in Alberta. 

Susan Nguyen, and fellow PaCER researcher Marlyn Gill, who has familiarity with cancer and chronic disease, got the study underway in the fall of 2017. Thirteen patients participated through a focus group or narrative interview. The study data revealed that although the care for bladder cancer patients was very good overall, there were many gaps along different points in the journey. The main gap was a patient’s difficulty in obtaining necessary information especially pertaining to next steps.  Susan felt her own experience was validated when one focus group participant aptly put it, “You have to beg, borrow and steal to get information.”

Read the full report

The final report for this patient experience study was recently completed and posted on the AHS Cancer SCN website as well as Bladder Cancer Canada’s web and social media sites:

Understanding Patient Experience with Bladder Cancer in Alberta

A report by PaCERs SUSAN NGUYEN and MARLYN GILL

https://www.albertahealthservices.ca/assets/about/scn/ahs-scn-cancer-understanding-patient-experience-with-bladder-cancer-in-alberta.pdf

Susan, Marlyn and the AHS SCN team members will be meeting in the future to discuss potential articles for publication. For more information on this patient engagement research study or other PaCER studies, please contact pacergroup@ucalgary.ca

 

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