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.

PurposeMost economic evaluations of health care programmes do not consider the effects of informal care, while this could lead to suboptimal policy decisions. This study investigates the construct validity of the CarerQol instrument, which measures and values carer effects, in a new population of informal caregivers.MethodsA questionnaire was distributed by mail (n = 1,100, net response rate = 21%) to regional informal care support centers throughout the Netherlands. Two types of construct validity, i.e., convergent and clinical validity, have been analyzed. Convergent validity was assessed with Spearman’s correlation coefficients and multivariate correlation between the burden dimensions (CarerQol-7D) and the valuation component (CarerQol-VAS) of the CarerQol. Additionally, convergent validity was analyzed with Spearman’s correlation coefficients between the CarerQol and other measures of subjective caregiver burden (SRB, PU). Clinical validity was evaluated with multivariate correlation between CarerQol-VAS and CarerQol-7D, characteristics of caregivers, care recipients and care situation among the whole sample of caregivers and subgroups.ResultsThe positive (negative) dimensions of CarerQol-7D were positively (negatively) related to CarerQol-VAS, and almost all had moderate strength of convergent validity. CarerQol-VAS was positively associated with PU and negatively with SRB. The CarerQol-VAS reflects differences in important background characteristics of informal care: type of relationship, age of the care recipient and duration of care giving were associated with higher CarerQol-VAS scores. These results confirmed earlier tests of the construct validity of the CarerQol. Furthermore, the dimensions of CarerQol-7D significantly explained differences in CarerQol-VAS scores among subgroups of carers.ConclusionNotwithstanding the limitations of our study, such as the low response rate, this study shows that the CarerQol provides a valid means to measure carer effects for use in economic evaluations. Future research should derive a valuation set for the CarerQol and further address the instrument’s content validity, sensitivity and reliability.

The CarerQol measures the impact of informal care among carers of LTC users in a feasible, valid and reliable way.

BackgroundInformal care is often not included in economic evaluations in healthcare, while the impact of caregiving can be relevant for cost-effectiveness recommendations from a societal perspective. The impact of informal care can be measured and valued with the CarerQol instrument, which measures the impact of informal care on seven important burden dimensions (CarerQol-7D) and values this in terms of general quality of life (CarerQol-VAS). The CarerQol can be included at the effect side of multi-criteria analyses of patient interventions or in cost-effectiveness or utility analysis of interventions targeted at caregivers.ObjectiveAt present, utility scores based on relative utility weights for the CarerQol-7D are only available for the Netherlands. This study calculates CarerQol-7D tariffs for Australia, Germany, Sweden, UK, and US.MethodsData were collected among the general population in Australia, Germany, Sweden, UK, and US by an Internet survey. Utility weights were collected with a discrete choice experiment with two unlabeled alternatives described in terms of the seven CarerQol-7D dimensions. An efficient experimental design with priors obtained from the Netherlands was used to create the choice sets. Data was analyzed with a panel mixed multinomial logit model with random parameters.ResultsIn all five countries, the CarerQol-7D dimensions were significantly associated with the utility of informal care situations. Physical health problems were most strongly associated with the utility for informal care situations. The tariff was constructed by adding up the relative utility weights per category of all CarerQol-7D dimensions for each country separately.ConclusionThe CarerQol tariffs for Australia, Germany, Sweden, UK, and US facilitate the inclusion of informal care in economic evaluations.

Despite compulsory health insurance in Europe, ethnic differences in access to health care exist. The objective of this study is to investigate how ethnic differences between Dutch and non-Dutch women with respect to late entry into antenatal care provided by community midwifes can be explained by need, predisposing and enabling factors. Data were obtained from the Generation R Study. The Generation R Study is a multi-ethnic population-based prospective cohort study conducted in the city of Rotterdam. In total, 2,093 pregnant women with a Dutch, Moroccan, Turkish, Cape Verdean, Antillean, Surinamese Creole and Surinamese Hindustani background were included in this study. We examined whether ethnic differences in late antenatal care entry could be explained by need, predisposing and enabling factors. Subsequently, logistic regression analysis was used to assess the independent role of explanatory variables in the timing of antenatal care entry. The main outcome measure was late entry into antenatal care (gestational age at first visit after 14 weeks). With the exception of Surinamese-Hindustani women, the percentage of mothers entering antenatal care late was higher in all non-Dutch compared to Dutch mothers. We could explain differences between Turkish (OR = 0.95, CI: 0.57–1.58), Cape Verdean (OR = 1.65. CI: 0.96–2.82) and Dutch women. Other differences diminished but remained significant (Moroccan: OR = 1,74, CI: 1.07–2.85; Dutch Antillean OR 1.80, CI: 1.04–3.13). We found that non-Dutch mothers were more likely to enter antenatal care later than Dutch mothers. Because we are unable to explain fully the differences regarding Moroccan, Surinamese-Creole and Antillean women, future research should focus on differences between 1st and 2nd generation migrants, as well as on language barriers that may hinder access to adequate information about the Dutch obstetric system.