Alliance Releases Caregiver Survey Report 2020

The Colorectal Cancer Alliance (Alliance) today released its first survey findings on caregivers of young-onset colorectal cancer (CRC) patients. The Caregiver Survey Report 2020 highlights the knowledge and support gaps reported by more than 200 caregivers, including needs related to medical decision making, financial support, parenting, mental health, and household and patient transportation issues.

The report is based on a caregiver-specific set of questions included in the latest Never Too Young Survey of young-onset CRC patients, survivors, and caregivers. A separate report on patients and survivors is available here.

“The Alliance is committed to casting a light on the challenges of caregivers, who in many cases are unprepared for this vitally important and incredibly demanding role,” said Andrea Goodman, Vice President of Patient and Family Support. “By better understanding the caregiver experience, our organization can develop more effective resources and support programs for this audience.”

Little research has been conducted on the coping strategies that either maximize or impede daily life among caregivers. Even less information is available on interventions medical providers can suggest to ease the caregiving burden. This report elucidates these challenges and others, making the burden and significance of the caregiver journey more visible.

Key findings include:

• 48% of respondents had knowledge gaps around treatment options
• 40% of respondents took an employment leave of absence, quit a job, or left school due to increased caregiving responsibilities
• 27% of respondents said the diagnosis made their relationship stronger while 32% stated the diagnosis strained their relationship
• 68% of respondents said they needed help for depression
• 32% of respondents reported fatigue, which is an overwhelming sense of tiredness
• 38% of respondents worried about future financial problems due to treatment costs

This caregiver report evolved from a series of trailblazing surveys the Alliance first launched in 2016 to better understand challenges and unmet needs in the under-50 population. The Never Too Young Survey series introduced a set of questions geared towards caregivers for the first time in 2018 — a questionnaire that was greatly expanded in 2019, providing for this report.

View the report here.

Young-onset colorectal cancer refers to people diagnosed under the age of 50, which is the recommended screening age by the United States Preventive Services Task Force.