Acute leukemia: burden on informal carers

Rationale

As illustrated by Leukaemia Care’s “Living with Leukaemia” report, the impact of acute leukaemia on informal carers can be substantial. It is desirable that new treatment options reduce this impact, and that reducing the impact on informal carers is valued by those that make reimbursement decisions. Health technology assessment agencies are willing to consider this impact, but often there is a lack of data to support this.

Objectives

The aim of this study would be to collect data on the burden on informal carers in the context of acute leukemia, and to explore the heterogeneity that exists within this population.

The specific aims are to:

• Understand carer’s treatment priorities
• Understand carer’s greatest concerns (re: the burden on themselves)
• Understand how carer’s views on treatment priorities may be related to their concerns
• Estimate carer / family QOL using validated measures

A survey will be designed with questions covering topics such as productivity losses/absenteeism, inequality effects, and quality of life (all to be determined).

Data would be collected online, and the primary deliverables would be a project report and a peer-reviewed journal publication.