Comparing loss of contractual employment pre- and post-diagnosis in patients with rare versus common cancer types: a national registry-based study

Patients with rare cancer often experience diagnostic delays and limited treatment options, potentially negatively impacting their working lives. We explored whether those with rare vs. common cancer have an increased risk of loss of contractual employment (1) up to 2 years pre-diagnosis, (2) up to 5 years post-diagnosis, and (3) which characteristics of rare cancer survivors are associated with loss of contractual employment 5 years post-diagnosis. Data from the Netherlands Cancer Registry and Statistics Netherlands were linked. Demographic, work-related, and cancer-related characteristics were obtained of 16,203 patients with rare cancer and 23,295 unmatched patients with common breast or colorectal cancer. Transitions in primary source of income were explored from contractual employment to work disability, unemployment, social welfare, (early) retirement, or self-employment. Logistic regression and competing risk survival analyses were applied. Employees with rare vs. common cancer had increased odds of becoming work-disabled pre-diagnosis (OR = 1.83, 95%CI 1.30-2.58) and of becoming self-employed post-diagnosis (HR = 1.32, 95%CI 1.03-1.68). Younger age and having a temporary employment contract were associated with becoming self-employed among those with rare cancers. Employees with rare vs. common cancer have an increased risk of loss of contractual employment pre- and post-diagnosis. To reduce the risk of adverse work outcomes pre- and post-diagnosis, awareness and knowledge of rare cancers need to be increased to shorten time to diagnosis and accelerate access to adequate care.