Background: In the Netherlands, centralized paediatric oncology care has markedly improved survival rates. Despite universal health coverage, emerging evidence and frontline reports indicate that families face financial hardship due to childhood cancer, primarily from income loss and out-of-pocket (OOP) costs. However, a standardized, quantitative assessment of this economic burden is lacking, hindering an effective policy response.

Objectives: This study aims to: 1) Develop and apply a standardized tool to measure the financial hardship experienced by Dutch families caring for a child with cancer; 2) Quantify non-reimbursed OOP costs and income loss within 3 to 12 months post-diagnosis; 3) Assess the impact on socio-economic status; and 4) Identify families' financial coping strategies.

Methods: In a collaborative project between the International Agency for Research on Cancer (IARC) and the Princess Máxima Center for Pediatric Oncology, we developed a prospective, mixed-methods study design. A standardized questionnaire will be administered to caregivers of children with cancer, to capture direct OOP costs (transport, accommodation, food, parking) and indirect costs (parental income loss, productivity changes). The questionnaire data will be linked with clinical and socio-demographic records of patients treated in the Máxima Center. Mean OOP costs will be expressed as a proportion of household income and predictors of financial hardship will be modelled. Qualitative insights from stakeholder interviews will contextualize the quantitative findings.

Results: Preliminary literature review substantiates OOP costs for families with childhood cancer in all socio-economic settings. Interviews with social workers, finance officers and parents at the Princess Máxima Center reveal that in the Netherlands testify of financial distress of families caring for a child with cancer. The primary driver is an inadequate care leave allowance, limited to only two weeks of paid leave, forcing parents into unpaid leave or reduced work and income. Additional expenses include travel for treatment, accommodation, and auxiliary medical fees. Although the impact increases with reduced socio-economic status, families across income levels are affected.

Conclusions/Implications: This study will provide the first comprehensive data on the financial hardship of childhood cancer in the Netherlands. The findings will expose critical gaps in social protection, to promote further improvement of childhood cancer outcome. The developed methodology will serve as a model for international comparative research. Ultimately, this evidence is crucial to initiate a global model of support program for families with childhood cancer, ensuring that medical progress is not undermined by preventable socio-economic impact.