Decision Regret and Burden in Caregivers of Patients with Appendiceal Cancer Undergoing Cytoreductive Surgery and...

Informal caregivers of patients with appendiceal cancer (AC) undergoing cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (CRS-HIPEC) may experience physical and psychological distress. The aim of this study was to determine the incidence of burden and decision regret among caregivers of patients with AC who underwent CRS-HIPEC.

An anonymous, IRB-exempt survey was administered to caregivers of patients with AC who underwent CRS-HIPEC. The primary outcome was caregiver burden (ZBI-12 survey). Secondary outcomes were assessed with the Decision Regret Scale (DRS), PROMIS-29 v 2.0 for quality of life (QOL), and the FACIT-COST for financial toxicity (FT).

A total of 34 caregivers were included. The mean ZBI-12 score was 16 (IQR 9.5-22.5), which has been described as a meaningful cutoff for high burden. There were no major demographics or tumor characteristic differences between high and low burden groups. The most common burdens were feeling stressed caring for their family member (58.8%) and feeling they had lost control of their life since their relative's illness (26.5%). Caregiver burden was significantly related to increased decision regret (R = 0.399, p = 0.019). Higher FT was seen in incomplete surgical debulking (58.3% in the high FT group versus 0%; p = 0.005) and patients and caregivers who traveled ≥ 50 miles to the CRS-HIPEC center.

Half of caregivers reported high burden, which was associated with worse QOL and regret. Future studies will explore opportunities to improve support and resources for caregivers of patients undergoing CRS-HIPEC, both perioperatively and in the long-term.