Abstract
BackgroundAssessing the impact of disease severity on generic quality of life (QOL) is a critical step in outcomes research and in the development of decision-analytic models structured around health states defined by clinical measures. While data from routine clinical practice found in healthcare registers are increasingly used for research, more attention should be paid to understanding the relationship between clinical measures of disease severity and QOL. The purpose of this work was therefore to investigate this relationship in psoriasis using a population-based dataset.MethodsSeverity was measured by the Psoriasis Area and Severity Index (PASI), which combines severity of erythema, induration, and desquamation into a single value ranging from 0 to 72. The generic EQ-5D-3L utility instrument, under the UK tariff, was used to measure QOL. The association between PASI and EQ-5D-3L was estimated using a population-based dataset of 2674 patients with moderate to severe psoriasis enrolled over ten years in the Swedish psoriasis register (PsoReg). Given the repeated measurement of patients in the register data, a longitudinal fixed-effects model was employed to control for unobserved patient-level heterogeneity.ResultsMarginal changes in PASI are associated with a non-linear response in EQ-5D-3L: Moving from PASI 10 to 9 (1 to 0) is associated with an increase of 0.0135 (0.0174) in EQ-5D-3L. Furthermore, unobserved patient-level heterogeneity appears to be an important source of confounding when estimating the relationship between QOL and PASI.ConclusionsUsing register data to estimate the impact of disease severity on QOL while controlling for unobserved patient-level heterogeneity shows that PASI appears to have a larger impact on QOL than previously estimated. Routine collection of generic QOL data in registers should be encouraged to enable similar applications in other disease areas.Trial registrationNot applicable.
Highlights
Assessing the impact of disease severity on generic quality of life (QOL) is a critical step in outcomes research and in the development of decision-analytic models structured around health states defined by clinical measures
Economic evaluations of health technologies compare the efficiency of a new health intervention with one or more alternatives in cost-effectiveness analyses with qualityadjusted life years (QALYs) as outcomes
The increase in EQ-5D-3L due to the decrease in Psoriasis Area and Severity Index (PASI) depends on the value of PASI and its square as well as the interactions with age and PSA
Summary
Assessing the impact of disease severity on generic quality of life (QOL) is a critical step in outcomes research and in the development of decision-analytic models structured around health states defined by clinical measures. While data from routine clinical practice found in healthcare registers are increasingly used for research, more attention should be paid to understanding the relationship between clinical measures of disease severity and QOL. In order to be relevant for decision making clinical efficacy, generic quality of life (QOL), and cost data are often synthesized in a Register data have increasingly been used to develop inputs for decision-analytic models, deriving healthcare resource use and associated costs has likely. In Sweden, many population-based registers are available that include both disease severity and QOL measures, while reflecting actual clinical practice. A primary advantage of a longitudinal approach is that time trends can be identified, allowing for observation of otherwise hidden relationships
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