Distress among primary caregivers of patients with cancer: a cross-sectional study

Objectives The primary objective of this study was to determine the prevalence, severity and associated factors of distress among primary caregivers of patients with cancer using the National Comprehensive Cancer Network (NCCN) distress thermometer (DT). The secondary objective was to examine the demographic characteristics and cancer types associated with clinically significant distress. Methods A cross-sectional study was conducted at the oncology unit of B.P. Koirala Institute of Health Sciences, Dharan, Nepal, surveying 173 primary caregivers of patients with cancer between 22 September 2023 and 20 June 2024. An interview-based questionnaire, including the NCCN DT, assessed the prevalence and severity of distress. Distress levels were categorised as mild (DT 0–3), moderate (DT 4–6) and severe (DT 7–10); a score of ≥4 denoted clinically significant distress which encompasses moderate and severe distress. Secondary outcomes included domain-specific distress, sociodemographic and clinical factors. Results Distress was reported by all caregivers, with 91.9% experiencing clinically significant (DT≥4) and 49.7% severe distress (DT≥7); median DT score was 6 (SD=1.755). Clinically significant distress was more common in caregivers aged ≥30 years, married individuals (p=0.03) and those with lower education levels (p=0.01). Caregivers of patients with gastrointestinal/hepatobiliary (p=0.029) and breast cancers reported higher distress. Statistically insignificant (p=0.208) higher distress was observed among caregivers of patients undergoing multimodal/palliative treatment. Domain-specific analysis revealed distress across physical, emotional, practical, social and spiritual domains. Conclusion Distress among caregivers of patients with cancer in Nepal is significantly high. Routine screening and interventions reduce adverse outcomes and improve both caregiver well-being and patient care.