Patients with colorectal cancer (CRC) and their caregivers share a high level of concordance regarding quality of care when both groups perceive care as “excellent,” results of a cross-sectional survey study have shown. These findings were published in the Journal of Oncology Practice.

Caregivers of patients with cancer serve as patient advocates, are often involved in cancer care coordination, and may act as patient proxies when patient communication with the cancer care team is not optimal.

A primary purpose of this study was to evaluate the level of concordance between patient and caregiver assessments of quality in 3 areas of CRC care: surgery, chemotherapy overall, and chemotherapy nursing. In addition, patient- and caregiver-specific clinical or demographic factors were also assessed to determine whether they had an influence on the level of concordance regarding colorectal cancer care quality.

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This study included patients with a first diagnosis of colorectal cancer during 2008 who were treated within the Veterans Administration health care system. Of the 1749 patients contacted by mail during 2009, 1109 (63%) agreed to participate in the survey, and 598 identified their primary patient caregivers for follow-up study participation. The survey response rate of patient caregivers was 70% (417 of 598 caregivers contacted), and survey responses for specific patient-caregiver pairs were compared.

Of the 417 patient-caregiver pairs included in the study, 96.6% of the patients were male, and 91.8% of the caregivers were female. Approximately two-thirds of patients were married, and 37.7% of patients had stage III or IV disease.  Among the patient-caregiver pairs, the percentages of patients who had undergone specific treatments and their caregivers, respectively, who rated care quality as “excellent” were 71.3% and 68.8% for surgery, 75.8% and 66.9% for chemotherapy overall, and 83.1% and 79.2% for chemotherapy nursing.

A key finding from this retrospective study was that a high level of concordance between patient and caregiver assessments of care quality was observed in all 3 assessment domains when the patient and the caregiver rated care quality as “excellent.” However, if the patient or caregiver did not rate care quality as “excellent,” a significant decrease in patient-caregiver concordance level was observed for all 3 domains (P <.001).

“This finding suggests that patients and caregivers agree on excellent quality of care

but have more differences in the way they define care that is less than excellent,” the study authors noted.

Contrary to results of other studies of similar design, no patient- or caregiver-specific factors (age, race, education, marital status, patient comorbidity score or cancer stage, care burden for caregiver, or caregiver relationship to patient) were found to correlate with level of concordance in care quality assessments made by patients and their caregivers.  

The study authors noted that “efforts to improve quality should be extended to caregivers because the cancer care journey commonly is traversed as a team, with the experiences of each member influencing the perception of the other.”

They further noted that “although caregivers may be a reasonable proxy for care quality given the overall high concordance, caution should be exercised if monitoring quality in areas that need improvement because caregiver proxy reports may be less reliable.”


Havyer RD, van Ryn M, Wilson PM, Bangerter LR, Griffin JM. Concordance of patient and caregiver reports on the quality of colorectal cancer care [published online August 20, 2019]. J Oncol Pract.  doi: 10.1200/JOP.19.00136