A key recommendation from our COLLABS (Colorectal Cancer Legal and Administrative Burden Support) study was to include caregivers and their needs in our Legal Care Checkups. Up to 50% of caregivers of patients with colorectal cancer experience financial toxicity that's linked with treatment non-adherence and lower quality of life. Many caregivers experience health-harming legal needs that Cancer Legal Care can help with, like navigating employment leave, understanding their rights around medical debt, and future planning. Current care practices often overlooks caregivers.
Thus, we conducted the LEGACY CARE study to evaluate the feasibility, acceptability, and preliminary efficacy of proactive legal support services for patients and caregivers after a recent colorectal cancer diagnosis. Like COLLABS, this study was led by Dr. Arjun Gupta of the University of Minnesota and the City of Hope Cancer Center in Phoenix, Arizona. The findings of the study were published this month in Psycho-Oncology.
During the study, patient-caregiver pairs met with an attorney from Cancer Legal Care for personalized legal check ups and a follow-up after three months. Key highlights include:
- 44% of participants reported health-harming legal needs at the start of the study.
- Cancer Legal Care identified at least one additional health-harming legal need per pair.
- At 3 months, 86% of the patients and 86% of the caregivers said they were likely or very likely to recommend the legal care check up to others.
Some caregiver participant comments:
- "They [Cancer Legal Care] explained and simplified complex things and also brought up issues we had not really thought through before."
- "This was like a safety net. It was relieving to know that we could call them [Cancer Legal Care] whenever we needed help."
- "Honestly speaking it [the cancer diagnosis] affected the whole family equally, and having these types of resources was very comforting."
What's next?
The study found that the patient-caregiver pairs noted improvements in financial control, seeking support, and maintenance of daily activities, but that caregiver-specific needs were not consistently identified or prioritized.
The study showed that supporting caregivers with their health-harming legal needs requires more than simply extending legal care services to them; instead, the results suggest that the major barrier to caregiver-centered legal care may be caregiver invisibility within patient-centered systems.
Future studies and caregiver-inclusive legal care intervention should work to identify caregiver needs through specific intake processes and maintain clear distinctions between patients, their caregivers, and their shared needs.
Big thanks to Dr. Gupta and his team for being such incredible champions for their patients, and to the Minnesota Colorectal Cancer Research Foundation for funding the LEGACY CARE study.
