Few studies have considered the importance of caregiver-reported outcomes (CROs). As studies have found that incorporating patient-reported outcomes into routine cancer care improves patient outcomes, CROs also may further enhance the patient experience. A study of the emotional and health impacts to caregivers was published in Current Oncology.
This study recruited 25 caregivers and 37 patients with colorectal cancer (CRC) at the University of British Columbia in Canada. Caregivers and patients were assessed using in-depth, semi-structured interviews.
Caregivers and patients, respectively, were mean age 55 and 65 years, 22 and 16 were women, and the most common relationship between caregiver and patient was as a marital or common-law partner.
The caregivers reported a wide range of emotions from fear and distress to loneliness and helplessness. The emotions fit into 6 broad categories of facing an uncertain future, needing to be with the patient through a never-ending nightmare of treatment, witnessing their loved one suffer, feeling worn down due to unrelenting caregiving, navigating a new and changing relationship with their loved one, and enduring unwanted changes.
In general, emotions were central to CROs and the emotions changed during differing stages of disease progression. Compared with patient-reported outcomes, the caregivers’ challenges did not arise from diagnosis or treatment themselves, as is observed among patients, but as a consequence of the effects the treatment was having on their loved one.
The researchers concluded that to incorporate CROs into routine care, focusing on distress, anxiety, and depression is likely insufficient and clinicians should consider a broader range of emotions. Additional studies are needed to assess the clinical utility of CROs.
Howard AF, Lynch K, Beck S, et al. 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(5):4184-4202. doi:10.3390/curroncol28050355
This article originally appeared on Oncology Nurse Advisor