Economic evaluations of health interventions aim to support decision making in healthcare. To effectively do so, evaluations need to include all relevant costs and effects of an intervention. Informal care provided by family or friends is an important element of care for many patients, but can have a profound impact on the health and well-being of carers. Therefore, informal care should be considered in economic evaluations of health interventions. Different methods to do so exist. This paper provides an overview of state-of-the-art methods available for this purpose, illustrated with practical examples. Since the choice of measurement and valuation technique depends on the type and perspective of the economic evaluation, this paper supports researchers in choosing the appropriate techniques to include informal care in their economic evaluation of a health intervention. We discuss the different approaches to measuring and valuing informal care, covering both partial and full valuation methods, allowing inclusion as costs or effects.

This study describes the impact of caregiving on parents of children with autism spectrum disorders (ASDs). Secondly, we investigate construct validation of the care-related quality of life instrument (CarerQol) measuring impact of caregiving. Primary caregivers of children with ASDs were included. Many parents experienced considerable problems combining daily activities with care, had financial problems or suffered from depressive mood. Validity tests showed that a higher impact of caring on the CarerQol was positively associated with higher subjective burden and lower family quality of life. Most of the associations between CarerQol scores and background characteristics confirmed previous research. The CarerQol validly measures the impact of caregiving for children with ASDs on caregivers in our sample. The CarerQol may therefore be useful for including parent outcomes in research on ASDs.

BackgroundInformal caregivers provide a significant part of the total care needed by ill or disabled persons. Although informal care is often the preferred option of those who provide and those who receive informal care, caring can nevertheless be very straining. This study investigates construct validation of an instrument of the impact of caregiving, the CarerQol.MethodsData was collected among adult caregivers (n = 1,244) selected from the general population using an online questionnaire in October 2010, in the Netherlands. The CarerQol measures and values the impact of informal care. The CarerQol measures subjective burden (CarerQol-7D) and well-being (CarerQol-VAS). Construct validation comprised clinical, convergent and discriminative validity tests.ResultsClinical validity was supported by statistically significant associations of CarerQol-VAS and caregivers’ health, income and employment status, care recipients’ health, and the relationship between caregiver and care recipient. Convergent validity was supported by positive associations of CarerQol-VAS with the two positive CarerQol-7D dimensions (fulfillment and support) and negative associations with the five negative CarerQol-7D dimensions (relational problems, mental health problems, problems combining daily activities, financial problems and physical health problems). Moreover, CarerQol-VAS was negatively associated with other instruments measuring caregiving burden.ConclusionsConstruct validity tests in a large, heterogeneous sample of caregivers show that the CarerQol validly measures the impact of caregiving. The CarerQol can be used in informal care research and economic evaluations of health care interventions. Hence, its use can facilitate informed decision making in health care.

We obtained a tariff providing standard utility scores for caring situations described with the CarerQol-7D. This facilitates the inclusion of informal care in economic evaluations.