5 by 5: Comparing 5 Quality of Life instruments in 5 countries

-Comparing quality of life instruments: 5 HRQoL (health related quality of life) instruments in 6 countries across 7 disease groups When setting priorities across health care programmes, it is essential to compare health outcomes from the different programmes as well as the disease severities in the patient groups. Which interventions yield the best outcomes in terms of health gains, and which patient groups suffer the largest disease burden? In answering these questions, we need to measure and value health related quality of life (HRQoL) on a commensurable scale. The best source of information is to ask patients to value their health state, either indirectly by use of a generic descriptive instrument that can be applied across all diagnoses, or directly by use of a valuation technique. The problem is that existing instruments give different health state valuations. When health planners have to make a choice between different treatment programmes, whose outcomes have been measured using different instruments, comparisons become difficult. To improve comparability, this project aims to develop exchange rates across HRQoL instruments. The primary aim of this large international project is to contribute to methodological development in the field of measuring health related quality of life (HRQoL), i.e. the quality adjustment weight used for calculating health outcomes in terms of QALY (quality-adjusted life years). The five most commonly used HRQoL-instruments are compared in six countries (Australia, Canada, Germany, Norway, UK, US). In each country, respondents from seven diagnostic groups (arthritis, asthma, cancer, depression, diabetes, hearing loss, heart diseases), as well as a group of non-diagnosed respondents, have participated in an extensive online survey. Beyond measuring and valuing their health, they expressed their subjective well-being using different instruments. The data set including 8,000 subjects represents a unique source for analyzing a wide range of topics: How can we convert the health state values inferred from one instrument to corresponding values on a different instrument? What is the connection between health and well-being, i.e. which symptoms and diagnosis have the largest impact on our functioning (capabilities), and in turn our subjective well-being? Beyond its scientific contributions in terms of improving methodologies that are currently being applied, the results of this project are useful for health planners when faced with different health care programme whose outcomes have been measured using different HRQoL instruments. Given the increasing concern for user involvement, the HRQoL instruments investigated are of particular interest in that they represent patient reported outcome measures (PROMs).

I tillegg til å forbedre metodene som anvendes på dette forskningsfeltet, vil resultater fra prosjektet være til nytte for beslutningstakere som må sammenlikne ulike helsetiltak der effektberegningene er basert på ulike metoder. Gitt den økende interesse for brukermedvirkning og pasienterfaringer i forskning, har dette prosjektet spesiell interesse i og med at det omhandler metoder til bruk for å måle pasientrapporterte utfall (patient reported outcome measures (PROMs).

Comparing disease severities and treatment effects across different patient groups is essential when setting health care priorities. For such decisions on "whether to help the crippled or the blind", it is required to measure health related quality of lif e (HRQoL) on a commensurable scale. The best source of information is to ask patients and users to value their health state, either indirectly by use of a generic descriptive instrument, or directly by use of a valuation technique. The problem is that ex isting instruments give very different results implying an arbitrary element when used as aid for informing priority setting. The primary aim of this large international project is to contribute to methodological development in the field of measuring hea lth related quality of life (HRQoL). The 5 most commonly used descriptive instruments are compared in each of 5 countries (Australia, Canada, US, UK, Norway). In each country, 8 respondent groups (300 healthy individuals, and 150 patients in each of 7 dif ferent diagnostic groups) participate in an online survey. Comparable data are being collected in 2012, funded by a grant from the Australian Research Council to PI Professor Richardson at Monash University, Melbourne. Richardsons team has developed one of the 5 instruments, carried out comprehensive literature reviews and are hands on wrt the continuing methodological development within this research field. This data set represents a unique source for analysing a wide range of topics, but country specif ic analyses require local funding. Given the increased Norwegian interest in the application of these HRQoL-instruments in the contexts of priority setting, national quality registers and clinical studies, a PhD-project is called for. Results from this p roject will help practitioners choose the best instrument. To a Norwegian funder, the analyses of this unique and freely available data set represents immense value for money.