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

Hoefman, Renske; Exel, Job van; Brouwer, Werner

doi:10.1007/s40273-016-0477-x

Cited by 49 publications

(59 citation statements)

References 35 publications

(35 reference statements)

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“…In addition, we observed that preferences for informal caregiving were associated with the positive and negative effects caregivers may experience. In line with previous studies, we found that deriving fulfilment or having mental or physical health problems were especially important in this context [40,41]. In general, respondents preferred informal care situations characterized by fewer hours a week and a higher financial compensation.…”

Section: Discussionsupporting

confidence: 90%

“…Per choice question, two unlabeled informal care situations were presented, and respondents were asked which of two alternatives they preferred. The attributes were selected from previous choice experiments on preferences for caregiving describing the informal care situations by seven burden dimensions of a validated measure of quality of life of caregivers, the Car-erQol instrument [27,[39][40][41]. This instrument includes the domains mental and physical health.…”

Section: Discrete Choice Experimentsmentioning

confidence: 99%

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The Monetary Value of Informal Care: Obtaining Pure Time Valuations Using a Discrete Choice Experiment

2018

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Background Interventions in health care often not only have an effect on patients, but also on their informal caregivers. Caregiving can have a profound impact on the health and wellbeing of carers. Ignoring these spillovers in economic evaluations risks labelling interventions mistakenly as cost-effective, at the expense of informal caregivers. Objective This paper investigates willingness-to-accept (WTA) values for an hour of informal care, corrected for positive and negative impacts of informal care, to facilitate the inclusion of informal care hours on the cost side of economic evaluations without double-counting spillover effects. Methods A discrete choice experiment (DCE) was conducted among a representative sample of the adult population in the Netherlands (n = 552) in September 2011. An experimental design minimizing the D-error was used to construct choice sets with two unlabelled alternatives with the attributes 'hours caregiving', 'monetary compensation for caregiving' and seven impacts of caregiving. To operationalize the random utility model, we used a panel mixed multinomial logit (MMNL) parameter model. For calculation of WTA, we used both population-level parameters and individual-level parameters. Results The mean WTA for an additional hour of informal care, corrected for positive and negative impacts of informal care, was €14.57. The signs of the coefficients were all in the expected directions. Conclusions This study reports a preference-based monetary value for informal care, corrected for other impacts. This valuation facilitates the inclusion of informal care hours on the cost side in economic evaluations without double-counting any spillover effects included on the effects side.

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Section: Discussionsupporting

confidence: 90%

Section: Discrete Choice Experimentsmentioning

confidence: 99%

The Monetary Value of Informal Care: Obtaining Pure Time Valuations Using a Discrete Choice Experiment

2018

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“…We included peer-reviewed articles published in English that reported a preference-based measure of caregiver or family member utility or disutility, including caregiver-focused measures for which population tariffs exist (i.e., CarerQol [20] and CES [21]), from the inception of each database through 3 April 2018. We included articles that reported on multiple patient diseases and/or using multiple preference-based methods/instruments, but excluded articles that reported only the EQ-VAS or a visual analog scale measure unless the scores were transformed into utilities using a known algorithm [22].…”

Section: Eligibility Criteriamentioning

confidence: 99%

“…These measures-the CarerQol and CES-include a different and more comprehensive set of dimensions than are typically included in QALY-based measures (e.g., fulfillment, financial problems, relational problems). While they may accurately capture caregiver-relevant dimensions [36], their valuations are based on a care-related quality-of-life scale so cannot be used to estimate QALYs, and therefore can neither be combined with patient QALYs in CEAs nor compared with CEAs based on QALYs [20]. They are of particular value, however, for comparatively evaluating caregiver interventions.…”

Section: What Is Spillover and How Can It Be Measured?mentioning

confidence: 99%

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Spillover Effects on Caregivers’ and Family Members’ Utility: A Systematic Review of the Literature

2019

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Background A growing body of research has identified health-related quality-of-life effects for caregivers and family members of ill patients (i.e. 'spillover effects'), yet these are rarely considered in cost-effectiveness analyses (CEAs). Objective The objective of this study was to catalog spillover-related health utilities to facilitate their consideration in CEAs. Methods We systematically reviewed the medical and economic literatures (MEDLINE, EMBASE, and EconLit, from inception through 3 April 2018) to identify articles that reported preference-based measures of spillover effects. We used keywords for utility measures combined with caregivers, family members, and burden. Results Of 3695 articles identified, 80 remained after screening: 8 (10%) reported spillover utility per se, as utility or disutility (i.e. utility loss); 25 (30%) reported a comparison group, either population values (n = 9) or matched, non-caregiver/ family member or unaffected individuals' utilities (n = 16; 3 reported both spillover and a comparison group); and 50 (63%) reported caregiver/family member utilities only. Alzheimer's disease/dementia was the most commonly studied disease/ condition, and the EQ-5D was the most commonly used measurement instrument. Conclusions This comprehensive catalog of utilities showcases the spectrum of diseases and conditions for which caregiver and family members' spillover effects have been measured, and the variation in measurement methods used. In general, utilities indicated a loss in quality of life associated with being a caregiver or family member of an ill relative. Most studies reported caregiver/family member utility without any comparator, limiting the ability to infer spillover effects. Nevertheless, these values provide a starting point for considering spillover effects in the context of CEA, opening the door for more comprehensive analyses. Key PointsInclusion of caregiver and family member ('spillover') quality-adjusted life-years (QALYs) in cost-effectiveness analyses (CEAs) is recommended by multiple national guidance bodies.Caregiver and family member QALYs can include spillover utilities (the independent utility loss due to a family member's illness) that are rarely reported in the literature; more common are caregivers'/family members' utilities, sometimes in combination with a comparator utility.Research gaps remain in spillover effect estimation and incorporation methods, slowing the adoption of these additional measures of burden into cost-effectiveness evaluations.

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Estimating an exchange‐rate between care‐related and health‐related quality of life outcomes for economic evaluation: An application of the wellbeing valuation method

et al. 2021

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Family carer outcomes can be included in cost-utility analysis by estimating carer quality-adjusted life years (QALYs) generated from an intervention, alongside patient QALYs (Goodrich et al., 2012;Lavelle et al., 2019). The QALYs calculated for carers are typically derived from instruments that capture health-related quality of life (HRQoL;Guets et al., 2020;Wittenberg et al., 2019), with the EQ-5D being the most widely used of these (Wittenberg et al., 2019). However, carers value attributes other than health; especially since caring has important social and relational dimensions that may be missed by common HRQoL instruments (Al-Janabi et al., 2011a). Preference-based measures, such as the Carer Experience Scale (CES; Al-Janabi et al., 2008) and the CarerQoL-7D (Brouwer et al., 2006) capture care-related quality of

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

Cited by 49 publications

References 35 publications

The Monetary Value of Informal Care: Obtaining Pure Time Valuations Using a Discrete Choice Experiment

The Monetary Value of Informal Care: Obtaining Pure Time Valuations Using a Discrete Choice Experiment

Spillover Effects on Caregivers’ and Family Members’ Utility: A Systematic Review of the Literature

Estimating an exchange‐rate between care‐related and health‐related quality of life outcomes for economic evaluation: An application of the wellbeing valuation method

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