Newswise — Support from family members and caregivers who understand the unique aspects of caring for a colorectal cancer patient is a top need amongst colorectal cancer patients today, according to a study published by the national advocacy organization Fight Colorectal Cancer. This need, as well as the other top needs of the colorectal cancer community, were recently shared in the Feb. 19 issue of the Journal of the National Comprehensive Cancer Network published by the National Comprehensive Cancer Network (NCCN). 

In an effort to provide reliable, effective education and support to patients, Fight Colorectal Cancer undertook a research study consisting of more than six focus groups hosted between 2015–2018 with 79 participants who volunteered for the groups and were asked two questions:  “What information do you wish you had at diagnosis?” and “What information do you need now?” All of the findings are detailed in “Priorities of Unmet Needs for Those Affected by Colorectal Cancer: Considerations from a Series of Nominal Group Technique Sessions.”

“Part of our mission involves making sure the voices of our relentless champions are heard in the spaces where decisions affecting them are made, and this study was one way to ensure the patient voice is heard loud and clear,” said Anjee Davis, president of Fight CRC. “We are proud to publish this study and highlight what patients need in the hopes of influencing care and removing some of the burdens on this already vulnerable group.” 

Led by public health experts on Fight CRC’s Research and Education team, Fight Colorectal Cancer sought feedback from patients, caregivers, medical professionals, and family members with a colorectal cancer connection. Following the focus groups, the team reviewed the data and found several key themes emerge.

When asked about the information and support they wished they had at the time of diagnosis, respondents’ top answers included:

  • Increased communication and coordination with care teams
  • increased access to CRC resources
  • A better understanding of cancer diagnosis and care 

Patient navigators were identified as playing a pivotal role in closing the gap.

When asked about the information and support patients need now, top answers included:

  • Support for families and caregivers, specifically programs tailored to the independent needs and unique aspects of care for CRC patients
  • Mental and behavioral support
  • Access to treatment and survivorship care plans. and the supportive care beyond treatment, to provide patients with the necessary tools to utilize complementary health and manage cancer as a chronic disease

The results of the study are paving the way for care teams, nonprofit organizations, and policymakers to understand how to effectively fight for CRC patients and reduce the stress of a diagnosis. The study is a foundation for future research, programmatic interventions, and policy initiatives at Fight CRC and beyond.

“We are so grateful and honored that almost 80 people offered honest, real, and raw feedback to our team about their personal experiences, and we are determined to share their input so that their voices are the ones that will bring about much-needed changes to systems and processes impacting the lives of future patients,” said Andrea (Andi) Dwyer, advisor to Fight CRC and Director of the Colorectal Cancer Screening Program at the Colorado School of Public Health.

The study was published in the Journal of the National Comprehensive Cancer Network (JNCCN), a journal dedicated to improving the quality of cancer care locally, nationally, and internationally. Movements to improve the patient and survivor experience have been gaining momentum over the past decade. Fight CRC will continue to carry out its mission and keep the patient voice front and center.

Read the full findings of the study published in JNCCN here. To fight for patients, become a Fight CRC advocate today, and to support more research efforts by Fight CRC, make a donation.

SEE ORIGINAL STUDY