Cancer Survivorship Burden

An article by OHE’s Paula Lorgelly and Margherita Neri will be published in a special issue of the Journal of Cancer Policy. The issue focuses on cancer survivors and cancer survivorship and our article (available as open access) provides a review of the current evidence on estimates of cancer survivorship burden and presents methodology to inform future estimates.

With more and more people surviving cancer, it is important to estimate the economic burden that survivorship places on these individuals, as well as on their friends, family, carers and the wider society. Nonetheless, few studies at present have estimated the burden of cancer survivorship considering all the elements of burden and using a societal perspective.

The economic burden of the disease is the sum of the monetary value of the resources associated with treating the disease plus the cost of the lost opportunities due to the disease. As shown in the table below, for the case of cancer, the cost components associated with the disease burden can be either direct or indirect. The table also shows the type of ‘payer’ who usually faces each component of the burden. Health-related quality of life (HRQoL) is also an important burden to consider for both survivors and caregivers. 

  Cost Component ‘Payer’
Direct Costs Medical costs for primary treatment and long-term care Healthcare system / insurer
Out of pocket (OOP) costs Survivor (and family)
Indirect Costs Productivity loss Survivor (and family); Caregivers
Informal caregiving cost Caregivers
Health-related quality of life (HRQoL) losses Survivor; Caregiver

Among the available evidence on indirect costs of cancer burden, the authors found that: productivity loss is higher among individuals aged between 18 and 64, when patients experienced cancer at young ages and in patients with other comorbidities; the value of caregiving can be of a similar magnitude to direct medical cancer costs; physical HRQoL tends to be lower among cancer survivors who were diagnosed in childhood. Indirect costs are more difficult to estimate than the direct costs incurred by the health care system, particularly due to issues around data collection. However, they are no less important. A number of challenges include:

  • Difficulty identifying and sampling survivors who are not receiving active treatment, and identifying and sampling their caregivers;
  • Difficulty linking self-reported data on indirect cost and HRQoL with direct healthcare costs, while accounting for the substitution effect (i.e. informal care instead of professional care).

Possible improvements to the estimation of survivorship burden include:

  • Considering a control sample of patients without a history of cancer, in order to identify the marginal burden of disease;
  • Considering the variations of burden across stage and site of cancer, to reflect the heterogeneity of the disease.

Appropriately designed burden of illness studies, consistent with the taxonomy of the cost components, which encompasses improvements in estimation methodologies, will be pivotal to support policymakers in the allocation of resources and establish the future research agenda.

For more information please contact Paula Lorgelly at OHE. 

Lorgelly, P.K. & Neri, M., 2018. Survivorship Burden for Individuals, Households and Society: Estimates and Methodology. Journal of Cancer Policy. DOI

Posted in Health Statistics, Other Public Policy, Research | Tagged External publications