A US Survey Across Seven Early-Stage Cancers Assessing the Humanistic Burden of Recurrence on Patients and Caregivers

Oncol Ther. 2025 Jun;13(2):339-361. doi: 10.1007/s40487-025-00328-4. Epub 2025 Mar 25.

Abstract

Introduction: Patients diagnosed with an early-stage cancer are at risk of recurrence. Although the economic burden of a cancer recurrence is described in the literature, little is known about the humanistic burden of an early-stage cancer recurrence. Therefore, we surveyed patients and caregivers to understand the impact of a first cancer recurrence on patient and caregiver quality of life (QoL).

Methods: Patients with early-stage bladder, gastric, head and neck (HN), melanoma, non-small cell lung, renal cell, and triple-negative breast cancers (TNBC) that recurred and caregivers of such patients completed a self-administered, online survey exploring QoL impacts. QoL was evaluated using de novo questions and the following instruments: EQ-5D-5L (patients and caregivers), European Organisation for Research and Treatment of Cancer Core Quality of Life questionnaire (patients only), and CareGiver Oncology Quality of Life questionnaire (caregivers only). Patient and caregiver responses and scores were stratified by type of cancer and type of recurrence (locoregional or distant/metastatic).

Results: Among patients (N = 202), QoL was found to differ significantly across tumor types at time of survey, with lower scores seen in patients with renal cell carcinoma, gastric cancer, and HN cancer and higher scores seen in patients with melanoma and TNBC. Among caregivers (N = 100), QoL did not differ across tumor types. In both patients and caregivers, decreases in QoL were observed from pre-recurrence to post-recurrence, with greater worsening in QoL seen with distant/metastatic versus locoregional recurrences. Most patients reported worrying and feeling anxious and stressed about their condition. Most caregivers reported worrying about the cared-for person's cancer getting worse or coming back and that caring for the person was challenging post-recurrence.

Conclusion: Our findings demonstrate the importance of preventing recurrences and their negative impact on patients' and caregivers' QoL. Early-stage cancer treatments that prevent recurrences can provide better QoL.

Keywords: Cancer recurrence; CarGOQoL; Caregiver burden; EORTC QLQ-C30; EQ-5D-5L; Humanistic burden; Quality of life; Survey.

Plain language summary

This study evaluated the quality-of-life (QoL) impacts following a recurrence of an early-stage cancer, focusing on seven different types of cancer: bladder cancer, gastric cancer, head and neck cancer, melanoma, non-small cell lung cancer, renal cell carcinoma, and triple-negative breast cancer. We surveyed both patients who experienced a recurrence of an early-stage cancer and caregivers of such patients, via online survey. Decreases in QoL were observed across all cancer types, with patients diagnosed with renal cell carcinoma, non-small cell lung cancer, gastric cancer, or head and neck cancer reporting the greatest decreases in QoL. When we analyzed patients by type of recurrence, we found that patients with a distant/metastatic first recurrence reported the greatest negative impacts on QoL compared with those with a local/regional first recurrence. Results for caregivers generally mirrored those for patients. The study results demonstrate the importance of preventing early-stage cancer from recurring.