Adaptation of a standardized self-reported cost questionnaire specific for the severe burn injury population (BI-CoPaQ)

Severe burn injuries (SBIs) are known to pose a significant burden on patients, caregivers, and the healthcare system. Yet, scarce data on the short and long-term clinical and economic impacts of these injuries limit the development of evidence-informed strategies and policies to better care for these patients. To fill in this gap, we adapted a previously validated self-reported out-of-pocket cost measurement questionnaire, the Cost for Patients Questionnaire (CoPaQ), to the severe burn injury survivor context. We conducted one-on-one cognitive semi-structured interviews with burn injury survivors, their caregivers, and healthcare providers to identify elements of the CoPaQ’s structure and content that needed to be revised to adapt to the specific health care trajectory, service utilization, needs and expenses incurred by adult severe burn injury survivors and their caregivers. Summative content analysis was used to identify items needing to be modified, deleted, or added. Based on this information, a preliminary version of a Burn Injury Cost for Patients Questionnaire (BI-CoPaQ) was developed and subsequently pre-tested on a small sample of SBIs survivors. Further validation of this tool will be required before BI-CoPaQ can be used as the standard for the estimation of the financial burden of SBIs in this population. •Little is known about the economic burden of severe burn injury survivors and their caregivers.•We propose the first standardized self-reported cost questionnaire specific for the adult severe burn injury population.•Once validated, this tool could be used to systematically examine the financial burden of severe burn injuries.•Its development may help enhance evidence-informed strategies and policies supporting SBIs patients and their caregivers.