Life After Cancer: Using the Internet to Improve Cancer Survivors’ Quality of Life
By: Colin R.J. Whaley and Jared Bongard
Supervisors: Dr. Jennifer Jones and Ms. Tina Papadakos
In Canada, approximately two thirds of those diagnosed with cancer will survive the disease, but survivors may experience adverse physical and psychosocial effects directly related to their disease or treatment.
The Electronic Living Lab for Interdisciplinary Cancer Survivorship Research (ELLICSR) at the University Health Network (UHN) 1, houses researchers and self-management research facilities, and is home to two distinct yet complementary programs, Cancer Survivorship and Rehabilitation (CRS) and Cancer Education. The CRS Program at Princess Margaret provides cancer rehabilitation to patients during and after acute cancer treatment with the goal to maximize their quality of life, functional independence, health and wellness. Cancer Education focuses on transforming cancer care through education research and knowledge translation, enabled by quality educational design, implementation, and rigorous evaluation.
A component of the CRS program is the Cancer Rehabilitation and Exercise (CaRE) program, which is a structured 8-week group rehabilitation program that provides patients with exercise programming and self-management education to support in their recovery within the domains of psychosocial wellbeing, physical activity and healthy eating. The CaRE program is provided to patients weekly at ELLICSR (CaRE@ELLICSR). To improve the reach and accessibility of the CaRE program, Cancer Survivorship and Rehabilitation and Cancer Education collaborated to adapt CaRE@ELLICSR to an online format which includes remote exercise monitoring and weekly eModules to deliver the self-management education. The new program, CaRE@Home will be launched this Fall.
Ensuring the ease of use of the self-management eModules for patients is imperative for the success of the CaRE@Home program, as cancer is stressful, complex and causes distress at a time when people are sick and need to make decisions. By following best-practices for intuitive design and plain language guidelines for written content, the demands on the learning process can be reduced, and patient learning can be optimized.2,3
We are conducting user testing on the eModules to evaluate their usability and acceptability. User testing uses a multidisciplinary approach to evaluate how people use technology, for the purposes of improving the usability of the software or hardware being assessed. Using questionnaires and semi-structured interviews, our testing captures information on patients’ computer proficiency, eHealth literacy, navigational and use challenges, and patient opinions on the content presented in the eModules.
Our preliminary findings include that users enjoy the interactive format of the eModules and the links to useful resources including meditation audio tracks, recipes and cooking videos. Participants consistently praised the crisp, clear and relevant custom images used to illustrate the concepts being communicated. Data is currently being analyzed, and items that caused confusion by three or more users will be addressed. These results will contribute to the development of best practices in the design of online adult education programming, specifically in the context of patient education.
- ELLICSR. Home | ELLICSR – Walking Together [Internet]. [cited 2018 Aug 3]. Available from: https://www.ellicsr.ca/en/Pages/default.aspx
- Institute of Medicine. Health Literacy: A Prescription to End Confusion. Nielsen-Bohlman L, Panzer AM, Kindig DA, editors. Washington, DC: The National Academies Press; 2004.
- Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): A new measure of understandability and actionability for print and audiovisual patient information. Patient Educ Couns [Internet]. 2014 [cited 2018 Jul 30];96:395–403. Available from: http://linkinghub.elsevier.com/retrieve/pii/S073839911400233X
- National Institutes of Health National Cancer Institute. Risk Factors: Age – National Cancer Institute [Internet]. Cancer Causes and Prevention. 2015 [cited 2018 Jul 30]. Available from: https://www.cancer.gov/about-cancer/causes-prevention/risk/age