N.J.A. van Exel

The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations

The societal perspective in economic evaluations dictates that costs and effects of informal care are included in the analyses. However, this incorporation depends on practically applicable, reliable and valid methods to register the impact of informal care. This paper presents the conceptualisation and a first test of the CarerQol instrument, aimed at measuring care-related quality of life in informal caregivers. The instrument combines the information density of a burden instrument (encompassing seven important burden dimensions) with a valuation component (a VAS scale for happiness). The instrument was tested in a Dutch sample of heterogeneous caregivers (n = 175) approached through regional caregiver support centres. This first test describes the feasibility as well as convergent and clinical validity of the CarerQol instrument. The seven burden dimensions related well with differences in VAS scores. In all instances, the average CarerQol-VAS scores decreased as the severity of problems increased. Multivariate analyses showed that the seven burden dimensions explained 37–43% of the variation in CarerQol-VAS scores, depending on the model used. The CarerQol seems a promising new instrument to register the impact of informal caregivers in economic evaluations.

Burden of informal caregiving for stroke patients: Identification of caregivers at risk of adverse health effects

Background: We assessed the objective and subjective burden of caregiving for stroke patients and investigated which characteristics of the patient, the informal caregiver and the objective burden contribute most to subjective burden and to the condition of feeling substantially burdened. Methods: We studied a sample of 151 stroke survivors and their primary informal caregivers. We collected data through patient and caregiver interviews 6 months after stroke. Results: Both the level of subjective burden and the condition of feeling substantially burdened were associated with both caregiver’s and patient’s health-related quality of life, patient’s age, and the number of caregiving tasks performed. Conclusions: These conditions can be used in clinical practice to identify potentially vulnerable caregivers in need of support and at risk of adverse health effects. Monitoring stroke survivors as well as their family caregivers at discharge may help to prevent or alleviate caregiver burden.

Assessment of post-stroke quality of life in cost-effectiveness studies: The usefulness of the Barthel Index and the EuroQoL-5D

Stroke is a major cause of death and long-term disability in Western societies and constitutes a major claim on health care budgets. We address the problem of estimating quality adjusted life years (QALYs) for use in cost-effectiveness studies of stroke interventions. In the acute phase after stroke – at stroke onset and during rehabilitation – many patients are physically or mentally not able to (self-)report their quality of life. Missing values may obviously bias cost-effectiveness results. We have examined the direct relationship between a conventional clinical scale of functional status that is suited for proxy-assessment (Barthel Index (BI)) and a measure of health related quality of life (EuroQoL-5D). Based on data collected within the framework of an evaluation of three stroke-service experiments in the Netherlands (n = 598, 6 month follow-up), we established a plausible and significant relationship between the measures. Health related quality of life (HRQoL) is −0.25 for patients with a BI of 0, and with each additional point HRQoL increases with 0.05. Independent patients (BI 20) get a HRQoL is 0.75, which corresponds to the general population reference score for our sample. BI scores may be used as proxy for HRQoL in case of missing values on EuroQoL-5D.

Balancing equity and efficiency in the Dutch basic benefits package using the principle of proportional shortfall

Economic evaluations are increasingly used to inform decisions regarding the allocation of scarce health care resources. To systematically incorporate societal preferences into these evaluations, quality-adjusted life year gains could be weighted according to some equity principle, the most suitable of which is a matter of frequent debate. While many countries still struggle with equity concerns for priority setting in health care, the Netherlands has reached a broad consensus to use the concept of proportional shortfall. Our study evaluates the concept and its support in the Dutch health care context. We discuss arguments in the Netherlands for using proportional shortfall and difficulties in transitioning from principle to practice. In doing so, we address universal issues leading to a systematic consideration of equity concerns for priority setting in health care. The article thus has relevance to all countries struggling with the formalization of equity concerns for priority setting.

Willingness to Pay for a Quality-Adjusted Life-Year: The Individual Perspective

OBJECTIVE The aim of this study was to elicit the individual willingness to pay (WTP) for a quality-adjusted life-year (QALY). METHODS In a Web-based questionnaire containing contingent valuation exercises, respondents valued health changes in five scenarios. In each scenario, the respondents first valued two health states on a visual analog scale (VAS) and expressed their WTP for avoiding a decline in health from the better health state to the worse, using a payment scale followed by a bounded open contingent valuation question. ANALYSIS WTP per QALY was calculated for QALY gains calculated using VAS valuations, as well as the Dutch EQ-5D tariffs, the two steps in the WTP estimations and each scenario. Heterogeneity in WTP per QALY ratios was examined from the perspective of: 1) household income; and 2) the level of certainty in WTP indicated by respondents. Theoretical validity was analyzed using clustered multivariate regressions. RESULTS A total of 1091 respondents, representative of the Dutch population, participated in the survey. Mean WTP per QALY was € 12,900 based on VAS valuations, and € 24,500 based on the Dutch EuroQoL tariffs. WTP per QALY was strongly associated with income, varying from € 5000 in the lowest to € 75,400 in the highest income group. Respondents indicating higher certainty exhibited marginally higher WTP. Regression analyses confirmed expected relations between WTP per QALY, income, and other personal characteristics. CONCLUSION   Individual WTP per QALY values elicited in this study are similar to those found in comparable studies. The use of individual valuations in social decision-making deserves attention, however.

“My Lung Disease Won’t Go Away, it’s There to Stay”: Profiles of Adaptation to Functional Limitations in Workers with Asthma and COPD

Purpose Earlier research has shown that adaptation (i.e., the way in which employees cope with limitations resulting from their disease) is associated with sick leave. Our aim was to investigate signs of adequate or inadequate adaptation in employees with asthma and COPD. Methods A Q-methodological study was carried out among 34 workers with asthma or COPD. Results Four adaptation profiles were distinguished: the eager, the adjusted, the cautious, and the worried workers. The adaptation profiles provide insight into the different ways in which workers with asthma and COPD cope with their illness at work. Conclusions The adaptation profiles serve as a starting point for the design of appropriate (occupational) care. The eager workers experience little difficulties at work; the cautious workers may need assistance in learning how to accept their disease; the worried workers need reassurance, and may need reactivation; the adjusted workers deserve extra attention, and, when necessary, advice on how to live with their asthma or COPD.

Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)

PurposeValidity is a contextual aspect of a scale which may differ across sample populations and study protocols. The objective of our study was to validate the Care-Related Quality of Life Instrument (CarerQol) across two different study design features, sampling framework (general population vs. different care settings) and survey mode (interview vs. written questionnaire).MethodsData were extracted from The Older Persons and Informal Caregivers Minimum DataSet (TOPICS-MDS, www.topics-mds.eu), a pooled public-access data set with information on >3,000 informal caregivers throughout the Netherlands. Meta-correlations and linear mixed models between the CarerQol’s seven dimensions (CarerQol-7D) and caregiver’s level of happiness (CarerQol-VAS) and self-rated burden (SRB) were performed.ResultsThe CarerQol-7D dimensions were correlated to the CarerQol-VAS and SRB in the pooled data set and the subgroups. The strength of correlations between CarerQol-7D dimensions and SRB was weaker among caregivers who were interviewed versus those who completed a written questionnaire. The directionality of associations between the CarerQol-VAS, SRB and the CarerQol-7D dimensions in the multivariate model supported the construct validity of the CarerQol in the pooled population. Significant interaction terms were observed in several dimensions of the CarerQol-7D across sampling frame and survey mode, suggesting meaningful differences in reporting levels.ConclusionsAlthough good scientific practice emphasises the importance of re-evaluating instrument properties in individual research studies, our findings support the validity and applicability of the CarerQol instrument in a variety of settings. Due to minor differential reporting, pooling CarerQol data collected using mixed administration modes should be interpreted with caution; for TOPICS-MDS, meta-analytic techniques may be warranted.

Putting your money where your mouth is: parents' valuation of good oral health of their children

The aim of this study was to investigate the parental willingness to invest in good oral health for their child in terms of money and time and to relate this to oral health related knowledge and behavioral aspects. 290 parents of 6-year-old children, participating in a RCT on caries preventive strategies in The Netherlands were asked to provide information on education, oral health habits, dietary habits, knowledge on dental topics, willingness to pay and perceived resistance against investing in preventive oral health actions for their children. Despite the fact that parents overall valued oral health for their child highly, still 12% of the parents were unwilling to spend any money, nor to invest any time by brushing their childrens teeth to maintain good oral health for their child. Additionally, they indicated that they were unwilling to visit the dentist for preventive measures more than once a year. These children may certainly be considered at higher risk of developing oral diseases because worse oral hygiene habits and dietary habits were found in this group. Given the results, it may be necessary to differentiate in allocating caries prevention programmes to target parents or (school-based) children directly.

Are all health gains equally important? An exploration of acceptable health as a reference point in health care priority setting.

BackgroundAccumulating evidence suggests that members of society prefer some QALY gains over others. In this paper, we explore the notion of acceptable health as a reference point in assessing the value of health gains. The value of health benefits may be assessed in terms of their position relative to this reference level, benefits above the level of acceptable health being valued differently from benefits below this level. In this paper we focus on assessing the level of acceptable health at different ages and associations with background variables.MethodsWe recruited a sample of the adult population from the Netherlands (n = 1067) to investigate which level of health problems they consider to be acceptable for people aged 40 to 90, using 10-year intervals. We constructed acceptable health curves and associated acceptable health with background characteristics using linear regressions.ResultsThe results of this study indicate that the level of health problems considered acceptable increases with age. This level was associated with respondents’ age, age of death of next of kin, health and health behaviour.ConclusionsOur results suggest that people are capable of indicating acceptable levels of health at different ages, implying that a reference point of acceptable health may exist. While more investigation into the measurement of acceptable health remains necessary, future studies may also focus on how health gains may be valued relative to this reference level. Gains below the reference point may receive higher weight than those above this level since the former improve unacceptable health states while the latter improve acceptable health states.

Some pain, no gain: experiences with the no-claim rebate in the Dutch health care system

To contain expenditures in an increasingly demand driven health care system, in 2005 a no-claim rebate was introduced in the Dutch health insurance system. Since demand-side cost sharing is a very controversial issue, the no-claim rebate was launched as a consumer friendly bonus system to reward prudent utilization of health services. Internationally, the introduction of a mandatory no-claim rebate in a social health insurance scheme is unprecedented. Consumers were entitled to an annual rebate of 255 eruos if no claims were made. During the year, all health care expenses except for GP visits and maternity care were deducted from the rebate until the rebate became zero. In this article, we discuss the rationale of the no-claim rebate and the available evidence of its effect. Using a questionnaire in a convenience sample, we examined peoples knowledge, attitudes, and sensitivity to the incentive scheme. We find that only 4% of respondents stated that they would reduce consumption because of the no-claim rebate. Respondents also indicated that they were willing to accept a high loss of rebate in order to use a medical treatment. However, during the last month of the year many respondents seemed willing to postpone consumption until the next year in order to keep the rebate of the current year intact. A small majority of respondents considered the no-claim rebate to be unfair. Finally, we briefly discuss why in 2008 the no-claim rebate was replaced by a mandatory deductible.