Informal Care In Economic Evaluations Research Articles

Making visible the cost of informal caregivers’ time in Latin America: a case study for major cardiovascular, cancer and respiratory diseases in eight countries

BackgroundInformal care is a key element of health care and well-being for society, yet it is scarcely visible and rarely studied in health economic evaluations. This study aims to estimate the time use and cost associated with informal care for cardiovascular diseases, pneumonia and ten different cancers in eight Latin American countries (Argentina, Brazil, Chile, Colombia, Costa Rica, Ecuador, Mexico and Peru).MethodsWe carried out an exhaustive literature review on informal caregivers’ time use, focusing on the selected diseases. We developed a survey for professional caregivers and conducted expert interviews to validate this data in the local context. We used an indirect estimate through the interpolation of the available data, for those cases in which we do not found reliable information. We used the proxy good method to estimate the monetary value of the use of time of informal care. National household surveys databases were processed to obtain the average wage per hour of a proxy of informal caregiver. Estimates were expressed in 2020 US dollars.ResultsThe study estimated approximately 1,900 million hours of informal care annually and $ 4,300 million per year in average informal care time cost for these fifteen diseases and eight countries analyzed. Cardiovascular diseases accounted for an informal care burden that ranged from 374 to 555 h per year, while cancers varied from 512 to 1,825 h per year. The informal care time cost share on GDP varied from 0.26% (Mexico) to 1.38% (Brazil), with an average of 0.82% in the studied American countries. Informal care time cost represents between 16 and 44% of the total economic cost (direct medical and informal care cost) associated with health conditions.ConclusionsThe study shows that there is a significant informal care economic burden -frequently overlooked- in different chronic and acute diseases in Latin American countries; and highlights the relevance of including the economic value of informal care in economic evaluations of healthcare.

Measuring Care-Related Quality of Life of Caregivers for Use in Economic Evaluations: CarerQol Tariffs for Australia, Germany, Sweden, UK, and US.

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.

Measuring and Valuing Informal Care for Economic Evaluation of HIV/AIDS Interventions: Methods and Application in Malawi

BackgroundEconomic evaluation studies often neglect the impact of disease and ill health on the social network of people living with HIV (PLHIV) and the wider community. An important concern relates to informal care requirements which, for some diseases such as HIV/AIDS, can be substantial. ObjectivesTo measure and value informal care provided to PLHIV in Malawi. MethodsA modified diary that divided a day into natural calendar changes was used to measure informal care time. The monetary valuation was undertaken by using four approaches: opportunity cost (official minimum wage used to value caregiving time), modified opportunity cost (caregiver’s reservation wage), willingness to pay (amount of money caregiver would pay for care), and willingness to accept (amount of money caregiver would accept for providing care to someone else) approaches. Data were collected from 130 caregivers of PLHIV who were accessing antiretroviral therapy from six facilities in Phalombe district in southeast Malawi. ResultsOf the 130 caregivers, 62 (48%) provided informal care in the survey week. On average, caregivers provided care of 8 h/wk. The estimated monetary values of informal care provided per week were US $1.40 (opportunity cost), US $2.41 (modified opportunity cost), US $0.40 (willingness to pay), and US $2.07 (willingness to accept). ConclusionsExclusion of informal care commitments may be a notable limitation of many applied economic evaluations. This work demonstrates that inclusion of informal care in economic evaluations in a low-income context is feasible.

Does Including Informal Care in Economic Evaluations Matter? A Systematic Review of Inclusion and Impact of Informal Care in Cost-Effectiveness Studies

Informal care makes an important contribution to societal welfare. However, it may involve substantial time costs and can have a considerable negative effect on the health and well-being of informal caregivers. These costs and effects of informal caregiving are often excluded in economic evaluations of healthcare interventions. The impact of this exclusion on the outcomes of these evaluations is largely unknown. This study aimed to explore the inclusion of informal care in economic evaluations and the potential impact of the costs and effects of informal caregiving on cost-effectiveness outcomes. A systematic review was conducted to identify economic evaluations of interventions in four distinct disease areas where informal care is potentially important: Alzheimer's disease, metastatic colorectal cancer, Parkinson's disease and rheumatoid arthritis. It was recorded how often economic evaluations included informal caregiving. Next, for the studies including informal care, the impact on cost-effectiveness outcomes was determined by removing informal care costs and effects of the cost-effectiveness calculations and recalculating the outcomes. The new cost-effectiveness outcomes were then compared with the original reported outcomes. The study identified 100 economic evaluations investigating interventions targeted at Alzheimer's disease (n = 25), metastatic colorectal cancer (n = 24), Parkinson's disease (n = 8) and rheumatoid arthritis (n = 43). Twenty-three of these evaluations (23 %) included costs and/or effects of informal caregiving: 64 % of the Alzheimer's disease studies, 0 % of the metastatic colorectal cancer studies, 13 % of Parkinson's disease studies and 14 % of rheumatoid arthritis studies. When informal care was included, this mostly concerned time costs. Studies rarely included both costs and effects. The effect of including or excluding informal care costs or effects on cost-effectiveness outcomes in most studies was modest, but in some studies the impact was strong. Most economic evaluations in the area of Alzheimer's disease include costs and/or effects related to informal caregiving. However, in other disease areas where informal caregiving is common it seems that the majority of economic evaluations ignore informal caregiving. The inclusion of informal care can have a strong impact on cost-effectiveness outcomes. Future economic evaluations should therefore consider the relevance of informal care in the context of their study, and either include these costs and effects or justify why they were excluded.

How to Include Informal Care in Economic Evaluations

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.

A Discrete Choice Experiment to Obtain a Tariff for Valuing Informal Care Situations Measured with the CarerQol Instrument

Economic evaluations adopting a societal perspective need to include informal care whenever relevant. However, in practice, informal care is often neglected, because there are few validated instruments to measure and value informal care for inclusion in economic evaluations. The CarerQol, which is such an instrument, measures the impact of informal care on 7 important burden dimensions (CarerQol-7D) and values this in terms of general quality of life (CarerQol-VAS). The objective of the study was to calculate utility scores based on relative utility weights for the CarerQol-7D. These tariffs will facilitate inclusion of informal care in economic evaluations. The CarerQol-7D tariff was derived with a discrete choice experiment conducted as an Internet survey among the general adult population in the Netherlands (N = 992). The choice set contained 2 unlabeled alternatives described in terms of the 7 CarerQol-7D dimensions (level range: "no,""some," and "a lot"). An efficient experimental design with priors obtained from a pilot study (N = 104) was used. Data were analyzed with a panel mixed multinomial parameter model including main and interaction effects of the attributes. The utility attached to informal care situations was significantly higher when this situation was more attractive in terms of fewer problems and more fulfillment or support. The interaction term between the CarerQol-7D dimensions physical health and mental health problems also significantly explained this utility. The tariff was constructed by adding up the relative utility weights per category of all CarerQol-7D dimensions and the interaction term. 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.

Het meten en waarderen van mantelzorg met de CarerQol

Measurement and valuation of informal care using the CarerQol Ill or disabled persons often rely, to a large extent, on the care provided by informal caregivers. Economic evaluations adopting a societal perspective should include informal care. If informal care is ignored, these evaluations may recommend a non-optimal alternative if interventions are compared in which informal caregivers play a substantial role. The CarerQol instrument is intended to measure and value carer outcomes. Different (inter)national studies use this instrument, including a large Dutch research project on elderly care (Nationaal Programma Ouderenzorg). This paper presents the results of some psychometric properties of the CarerQol. A study among a heterogeneous sample of informal caregivers shows that the feasibility of the instrument was good and the validity was encouraging. Next research will further investigate the psychometric properties of the CarerQol, in specific the validity among a new heterogeneous population of caregivers and the reliability of the instrument. In addition, future research will focus on the establishment of tariffs for the CarerQol. These tariffs enable the inclusion of the effects of informal care in economic evaluations, and therefore increase the chance accurate conclusions will be drawn from these evaluations. Keywords: informal care, economic evaluations, CarerQol instrument

The value of informal care–a further investigation of the feasibility of contingent valuation in informal caregivers

Including informal care in economic evaluations is increasingly advocated but problematic. We investigated three well-known concerns regarding contingent valuation (CV): (1) the item non-response of CV values, (2) the sensitivity of CV values to the individual circumstances of caring, and (3) the choice of valuation method by comparing willingness-to-pay (WTP) and willingness-to-accept (WTA) values for a hypothetical marginal change in hours of informal care currently provided.The study sample consisted of 1453 caregivers and 787 care recipients. Of the caregivers, 603 caregivers (41.5%) provided both WTP and WTA values, 983 (67.7%) provided at least one. Determinants of non-response were dependent on the valuation method; primary determinants were education and satisfaction with amount of informal care provided. Caregivers' mean WTP (WTA) for reducing (increasing) informal care by 1 h was euro9.13 (10.52). Care recipients' mean WTA (WTP) for reducing (increasing) informal care by 1 h was euro8.88 (euro6.85). Values were associated with a variety of characteristics of the caregiving situation; explanatory variables differed between WTP and WTA valuations. The differences between WTP and WTA valuations were small.Based on sensitivity CV appears to be a useful method to value informal care for use in economic evalations, non-response, however, remains a matter of concern.

Una panoramica delle metodologie per la valutazione delle cure informali negli studi di economia sanitaria

This paper compares several applied valuation methods for including informal care in economic evaluations of healthcare programmes: the proxy good method; the opportunity cost method; the contingent valuation method (CVM); conjoint measurement (CM); and valuation of health effects in terms of health-related quality of life (HR-QOL) and well-being. The comparison focuses on three questions: what outcome measures are available for including informal care in economic evaluations of healthcare programmes; whether these measures are compatible with the common types of economic evaluation; and, when applying these measures, whether all relevant aspects of informal care are incorporated.

What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up

Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people, to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations.

An Overview of Methods and Applications to Value Informal Care in Economic Evaluations of Healthcare

This paper compares several applied valuation methods for including informal care in economic evaluations of healthcare programmes: the proxy good method; the opportunity cost method; the contingent valuation method (CVM); conjoint measurement (CM); and valuation of health effects in terms of health-related quality of life (HR-QOL) and well-being. The comparison focuses on three questions: what outcome measures are available for including informal care in economic evaluations of healthcare programmes; whether these measures are compatible with the common types of economic evaluation; and, when applying these measures, whether all relevant aspects of informal care are incorporated. All types of economic evaluation can incorporate a monetary value of informal care (using the opportunity cost method, the proxy good method, CVM and CM) on the cost side of an analysis, but only when the relevant aspects of time costs have been valued. On the effect side of a cost-effectiveness or cost-utility analysis, the health effects (for the patient and/or caregiver) measured in natural units or QALYs can be combined with cost estimates based on the opportunity cost method or the proxy good method. One should be careful when incorporating CVM and CM in cost-minimization, cost-effectiveness and cost-utility analyses, as the health effects of patients receiving informal care and the carers themselves may also have been valued separately. One should determine whether the caregiver valuation exercise allows combination with other valuation techniques. In cost-benefit analyses, CVM and CM appear to be the best tools for the valuation of informal care. When researchers decide to use the well-being method, we recommend applying it in a cost-benefit analysis framework. This method values overall QOL (happiness); hence it is broader than just HR-QOL, which complicates inclusion in traditional health economic evaluations that normally define outcomes more narrowly. Using broader, non-monetary valuation techniques, such as the CarerQol instrument, requires a broader evaluation framework than cost-effectiveness/cost-utility analysis, such as cost-consequence or multi-criteria analysis.

The economic value of informal care: a study of informal caregivers' and patients' willingness to pay and willingness to accept for informal care

We provide a new test of the feasibility of using contingent valuation to value informal care. We start with a theoretical model of informal caregiving and derive that willingness to pay depends positively on wealth and negatively on own health, whereas the effect of other's health is sign-ambiguous. These predictions are tested in two new data sets on patients' and caregivers' willingness to pay (WTP) and willingness to accept (WTA) for informal care. The data are generally consistent with the theoretical predictions: wealth generally has a positive impact and own health a negative impact. Other's health has a mixed effect. We find only small differences between WTP and WTA. Our findings suggest that contingent valuation may be a useful technique to value informal care in economic evaluations of health care.

Economic valuation of informal care. An overview of methods and applications.

Informal care makes up a significant part of the total amount of care provided to care recipients with chronic and terminal diseases. Still, informal care is often neglected in economic evaluations of health care programs. Probably this is related to the fact that the costs of informal care are to an important extent related to time inputs by relatives and friends of care recipients and time is not easy to value. Development of theoretically sound, yet easily applicable valuation methods is therefore important since ignoring the costs of informal care may lead to undesirable shifts between formal and informal care. Moreover, there is increasing evidence that providing informal care may lead to health problems for the caregiver, both in terms of morbidity and mortality. Until now these health effects have not been incorporated in economic evaluations. More attention for the identification and valuation of the full costs and (health) effects of informal care for the informal caregiver seems needed therefore. This contribution presents a critical evaluation of the available methods to incorporate informal care in economic evaluations.