Cancer care imposes profound financial and psychological burdens on both patients and their caregivers. Out-of-pocket (OOP) expenditure constitutes a significant portion of health financing in many settings, indicating households are primary funders of healthcare, including cancer treatment. While the treatment costs are often taken into account, the comprehensive share of out-of-pocket (OOP) expenses borne by caregivers, including medical, non-medical, and substantial indirect costs, such as absenteeism, presenteeism, activity impairment, lost productivity, long-term income disruptions and unpaid informal care, is not yet accounted in terms of health care costs within health policy frameworks. The dual burden of financial strain and caregiving responsibilities often leads to intensified levels of physiological distress among the caregivers. There is yet no research that has comprehensively examined OOP costs incurred by caregivers of cancer patients or investigated how escalating financial demands interact with mental health outcomes. This study aimed to, for the first time, comprehensively quantify and catalogue the annual OOP costs for primary caregivers of cancer patients in Nepal and to determine the significant predictors of associated psychological distress.
 
Objectives: To assess the out-of-pocket cost and proximal determinants of psychological distress among primary caregivers of cancer patients at selected tertiary cancer treatment centres.
 

An analytical cross-sectional study was conducted among 408 primary caregivers (aged ≥18 years) of cancer patients (diagnosed for ≥1 month) at BP Koirala Memorial Cancer Hospital and Bhaktapur Cancer Hospital, using purposive consecutive sampling. Data were collected using a structured tool to capture direct (medical and non-medical expenses) and indirect annual out-of-pocket (OOP) costs, including productivity loss, informal caregiving, and travel time. Psychological distress was measured using the Hopkins Symptom Checklist-25 (HSCL-25), with a cutoff of ≥1.75 indicating clinical significance. All instruments were pre-tested, and reliability analyses (Cronbach’s alpha) confirmed good internal consistency. Data were analyzed in RStudio (v4.5.1) using descriptive statistics and Kruskal–Wallis/Man Whitney tests for group comparisons. Multivariable linear regression with bias-corrected accelerated (BCa) bootstrapping (1,000 iterations, 95% CI) identified sociodemographic, clinical, and OOP factors independently associated with HSCL-25 distress scores, adjusting for confounders (p<0.05). Ethical approval was obtained from the Nepal Health Research Council (Ref: 2965).
 
The prevalence of psychological distress was 58.8% (anxiety: 61.8%; depression: 52.7%). Annual OOP cost averaged 714,932 NRS (4,933 USD), comprising direct costs of 325,041 NRS (2,243 USD) and indirect costs of 389,891 NRS (2,690 USD), with indirect costs comprising 55% of burden. Multivariable regression identified the highest OOP quintile as the strongest predictor (β=23.25, CI: 19.1-27.38),  female caregivers (β=8.21, CI:4.82-11.78), nuclear family (β=3.19,CI:0.57-5.67), parents as caregiver (β=8.87, CI:0.18-18.63), caregiver comorbidities (β=3.23,CI: -0.08-6.2), middle wealth quintile (β=3.77, CI:0.13-7.7), cervical cancer (β=-4.64, CI:-8.82 to -0.53), outpatient status (β=5.11, CI: 2.43-7.84), non-ambulatory patients (β=4.64, CI:1.58-8.46), and temporary stay for treatment (β=3.17, CI:0.22-5.9).
 
The substantial financial burden borne by caregivers, with indirect costs constituting the majority of OOP costs suggest strong independent predictor of severe psychological distress. Addressing this dual burden requires targeted interventions and support in economic systems and relevant research in the Nepalese scenario for equitable and sustainable cancer care.
 

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