Abstract
BackgroundA chronic disease impacts a patient’s daily life, with the burden of symptoms and managing the condition, and concerns of progression and disease complications. Such aspects are captured by Patient-Reported Outcomes Measures (PROM), assessments of e.g. wellbeing. Patient-Reported Experience Measures (PREM) assess patients’ experiences of healthcare and address patient preferences. Biomarkers are useful for monitoring disease activity and treatment effect and determining risks of progression and complications, and they provide information on current and future health. Individuals may differ in which among these aspects they consider important. We aimed to develop a measure of quality of life using biomarkers, PROM and PREM, that would provide an unambiguous ranking of individuals, without presuming any specific set of importance weights. We anticipated it would be useful for studying needs and room for improvement, estimating the effects of interventions and comparing alternatives, and for developing healthcare with a broad focus on the individual. We wished to examine if efficiency analysis could be used for this purpose, in an application to individuals with type 1 diabetes.ResultsWe used PROM and PREM data linked to registry data on risk factors, in a large sample selected from the National Diabetes Registry in Sweden. Efficiency analysis appears useful for evaluating the situation of individuals with type 1 diabetes. Quality of life was estimated as efficiency, which differed by age. The contribution of different components to quality of life was heterogeneous, and differed by gender, age and duration of diabetes. Observed quality of life shortfall was mainly due to inefficiency, and to some extent due to the level of available inputs.ConclusionsThe efficiency analysis approach can use patient-reported outcomes measures, patient-reported experience measures and comorbidity risk factors to estimate quality of life with a broad focus on the individual, in individuals with type 1 diabetes. The approach enables ranking and comparisons using all these aspects in parallel, and allows each individual to express their own view of which aspects are important to them. The approach can be used for policy regarding interventions on inefficiency as well as healthcare resource allocation, although currently limited to type 1 diabetes.
Highlights
Noncommunicable chronic diseases, mainly cardiovascular diseases, cancers, chronic respiratory diseases and diabetes, cause 71% of deaths globally, and significant economic burden
With the EuroQol questionnaire (EQ-5D), such valuations are limited to health-related quality of life, and exclude judgments of healthcare involving preferences, such as aspects captured in Patient-Reported Experience Measures (PREM)
Efficiency Around 4% of the individuals were on the frontier in the intermediate model; around 9% in the capability model (Table 3), efficiency discriminates between most individuals
Summary
Noncommunicable chronic diseases, mainly cardiovascular diseases, cancers, chronic respiratory diseases and diabetes, cause 71% of deaths globally, and significant economic burden. A chronic disease impacts a patient’s daily life, with the burden of symptoms and managing the condition, and concerns of progression and disease complications Such aspects are captured by Patient-Reported Outcomes Measures (PROM), assessments of e.g. wellbeing. We aimed to develop a measure of quality of life using biomarkers, PROM and PREM, that would provide an unambiguous ranking of individuals, without presuming any specific set of importance weights. We anticipated it would be useful for studying needs and room for improvement, estimating the effects of interventions and comparing alternatives, and for developing healthcare with a broad focus on the individual. We wanted a measure that relies neither on any pre-specified set of weights nor on a set common to everyone, and that avoids ambiguity in comparisons
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