Primary caregivers are family members or friends who take on the work of helping patients throughout their cancer journey with their physical, emotional, disease management and practical needs.
Because the cancer journey includes a long series of stressful events, primary caregivers have high levels of ongoing caregiver burden, including emotional challenges, work and income, and their own health problems.
Which of these outcomes matter most to primary caregivers? When and how is best to perform screening for these caregiver-reported outcomes (CROs)? What assistance might be most helpful?
To answer these questions, we interviewed patients with colorectal cancer, their primary caregivers, as well as health care professionals from nursing, medicine, and social work who are involved in the care of colorectal cancer patients.
Caregiver-Reported Outcomes’ development, assessment, and implementation will benefit from recognizing:
Howard, A.F.; Lynch, K.; Beck, S.; Torrejón, M.-J.; Avery, J.; Thorne, S.; Porcino, A.; De Vera, M.; Lambert, L.; Wolff, A.; McDonald, M.; Lee, J.; Hedges, P.; McKenzie, M. At the Heart of It All: Emotions of Consequence for the Conceptualization of Caregiver-Reported Outcomes in the Context of Colorectal Cancer. Curr. Oncol. 2021, 28, 4184-4202. https://doi.org/10.3390/curroncol28050355
Howard, A.F., Torrejón, MJ., Lynch, K. et al. To share or not to share: communication of caregiver-reported outcomes when a patient has colorectal cancer. J Patient Rep Outcomes 6, 13 (2022). https://doi.org/10.1186/s41687-022-00418-1
Apr 2021: Oncology Nursing Society (ONS) Annual Research Forum
May 2021: Canadian Centre for Applied Research in Cancer Control (ARCC) Conference
May 2021: The 22nd International Psycho-Oncology Society World Congress (IPOS 2021)
June 2021: Canadian Association of Psychosocial Oncology (CAPO) Conference
June 2021: Multinational Association of Supportive Care in Cancer (MASCC) Meeting
Sept-Oct 2021: Canadian Association of Radiation Oncology (CARO) Annual Scientific Meeting
Oct 2021: The International Society for Quality of Life Research (ISOQOL) Annual Conference
Oct 2021: Canadian Association of Nurses in Oncology (CANO) Annual Conference
Nov 2021: BC Cancer Summit 2021
Apr 2022: Oncology Nursing Society (ONS) Annual Research Forum
Michael McKenzie, Co-PI
Amanda Fuchsia Howard, Co-PI
Mary De Vera
Maria Jose Torrejon
Our team member, Scott Beck, along with BC Cancer Clinical Nurse Specialist colleague Jagbir Kaur, helped supervise Ashley Degner, Garret MacMaster, Kaitlyn Schrauwen, Sharlene Campbell and Maddy Holford—all UBC Okanagan undergraduate nursing students—who used the findings from our “To Share or Not to Share” manuscript to complete a capstone project for their nursing leadership course.
For their course, they were tasked with designing a Knowledge Translation strategy aimed at direct care nurses. BC Cancer will review the recommendations to consider incorporating them in future work to implement patient-centered models of care.
If you’re in a rush, check out these snack-size highlights:
The most important thing for caregivers
Acknowledging caregiver work & integrating caregiver-reported outcomes
Some benefits of engaging groups of patient partners
Watch the full webinar: