Abstract
ObjectivesCost-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). MethodsFollow-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. ResultsA 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<.05) and that a lower seizure count was associated with a higher EQ-5D utility score (P<.05). ConclusionsWhen 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.
Highlights
Cost-effectiveness analyses are often used by reimbursement agencies to inform decisions on whether or not to reimburse novel healthcare interventions
Using data from the Epilepsy Support Dog Evaluation (EPISODE) study, our analyses indicated that people with medically refractory epilepsy seem more likely to complete health-related quality of life (HRQoL) surveys on good days rather than bad days in terms of seizure count
Future research may help identify for which episodic conditions the timing of completing the survey is relevant, by considering disease characteristics such as the frequency, duration, severity, and time intervals of symptom episodes. This exploratory study showed that people with epilepsy (PWE) are more likely to complete HRQoL surveys on relatively good days in terms of seizure counts
Summary
Cost-effectiveness analyses are often used by reimbursement agencies to inform decisions on whether or not to reimburse novel healthcare interventions. The outcome of a costeffectiveness analysis is commonly expressed as the incremental costs per quality-adjusted life-year (QALY). QALYs are a function of both length of life and health-related quality of life (HRQoL). Estimation of the “quality” component can be achieved with a standardized measure of HRQoL such as EQ-5D.1. The resulting value is the EQ-5D utility score, which is often equated to HRQoL, and will be the terminology in this article. EQ-5D is the preferred HRQoL measure of reimbursement agencies such as the National Institute for Health and Care Excellence in England and the National Health Care Institute in The Netherlands.[2,3,4] EQ-5D intends to capture self-reported health status on the day of completing the survey (“health today”)
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