Background
Informal caregivers disproportionately carry the burden of caring for patients with cancer. Current economic evaluations of health services and interventions are based on the benefits to the formal healthcare system, while the financial impact on informal caregivers is routinely overlooked. This approach precludes a societal understanding of the drivers of burden and costs borne by caregivers. To date, no standardised instrument exists to understand the economic impact of informal caregiving for cancer patients at the end-of-life.
Aims
1. To co-design a questionnaire that comprehensively captures the resources incurred by caregivers for cancer patients at the end-of-life
2. To assess its feasibility, acceptability and face validity.
Methods
Mixed-methods study conducted in three phases:
1. Semi-structured interviews with caregivers to explore the depth and breadth of resources used in day-to-day life and scoping literature review.
2. Questionnaire design by a community advisory group (CAG) comprised of caregivers and community-based clinicians using thematic findings from phase one and lived experience.
3. Questionnaire piloting using cognitive-interviewing techniques to assess its feasibility, acceptability and face validity
Results
For caregivers for someone with cancer who has accessed palliative care, direct cost categories include home environment, food, equipment, medications, transport, healthcare, insurance and funeral and faith-based costs. Indirect cost categories include carer time, family and friend time, employment absenteeism and presenteeism, own health, and leisure or opportunity costs. These categories informed final questionnaire content, which consists of eight domains with 36 questions that meaningfully capture the economic impact of informal caring for cancer patients at the end-of-life. The initial pilot results have found the tool to be feasible, acceptable and valid.
Conclusions
This tool can shape how we value informal caregivers by contributing data informed by a societal perspective to future economic evaluations of care for cancer patients who are at the end-of-life.