Good Days and Bad Days:Measuring Health-Related Quality of Life in People With Epilepsy

Objectives: Cost-effectiveness analyses typically require measurement of health-related quality of life (HRQoL) to estimate quality-adjusted life-years. Challenges with measuring HRQoL arise in the context of episodic conditions if patients are less likely—or even unable—to complete surveys when having disease symptoms. This article explored whether HRQoL measured at regular time intervals adequately reflects the HRQoL of people with epilepsy (PWE). Methods: Follow-up data from the Epilepsy Support Dog Evaluation study on the (cost-)effectiveness of seizure dogs were used in which HRQoL is measured in 25 PWE with the EQ-5D at baseline and every 3 months thereafter. Seizure count is recorded daily using a seizure diary. Regression models were employed to explore whether PWE were more likely to complete the HRQoL survey on a good day (ie, when seizures are absent or low in frequency compared with other days) and to provide an estimate of the impact of reporting HRQoL on a good day on EQ-5D utility scores. Results: A total of 111 HRQoL measurements were included in the analyses. Regression analyses indicated that the day of reporting HRQoL was associated with a lower seizure count (P&lt;.05) and that a lower seizure count was associated with a higher EQ-5D utility score (P&lt;.05). Conclusions: When HRQoL is measured at regular time intervals, PWE seem more likely to complete these surveys on good days. Consequently, HRQoL might be overestimated in this population. This could lead to underestimation of the effectiveness of treatment and to biased estimates of cost-effectiveness.</p

The monetary value of informal care: obtaining pure time valuations using a Discrete Choice Experiment

Background Interventions in health care often not only have an efect 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-efective, 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 efects. 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 coefcients 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 efects included on the efects side

What Constitutes Well-being? Five Views Among Adult People from the Netherlands on what is Important for a Good Life

Well-being has gained interest as object of study in the social sciences and as an outcome measure for policy evaluation. However, little agreement exists with respect to the substantive meaning of well-being, the dimensions of well-being that should be considered in a multi-dimensional approach, and the variety of well-being conceptions people have for their own lives. This study explored conceptions of “a good life for you” among 1,477 adult people from the Netherlands by means of Q-methodology, based on a theoretical framework synthesizing the main theories of well-being. We find five distinct views on what people consider to be a good life for themselves: “Health and feeling well”, “Hearth and home”, “Freedom and autonomy”, “Social relations and purpose” and “Individualism and independence”. While there is strong agreement with respect to the importance of feeling both physically and mentally well, the views diverge considerably regarding aspects such as social relations, autonomy, spirituality, and material welfare. Associations between viewpoints and respondent characteristics had face validity. The findings of this study have significant implications for the development of measures of well-being and policies aimed to improve population well-being. Further research is required into the prevalence of these views on well-being in the population, their relation to respondent characteristics and into differences in views over time and between countries with different socio-economic, political and cultural environments.</p