Whom should we ask? A systematic literature review of the arguments regarding the most accurate source of information for valuation of health states

Abstract

Purpose To determine and critically evaluate the arguments in the published literature regarding the most accurate source of information for valuation of health states: values based on experienced health states (patient values) or values based on described health states (general public values). Methods A search strategy was applied to three electronic databases: Scopus, Ovid Medline, and Econlit. The first search was conducted in October 2015 and a complementary search in November 2017. Articles containing arguments in favor of either using patient values or using general public values were included in the analysis. The arguments were analyzed qualitatively and grouped into first-, second-, and third-level themes. Results After initial identification, screening and assessment for eligibility, 163 articles were thoroughly assessed for arguments; 82 articles were finally included in the analysis. Our analysis indicates that none of the debated positions is flawless: although patients in many cases have superior knowledge about the health state they experience, their view of what their life is like may be distorted, e.g., due to reference point effects. Some popular arguments are irrelevant to the issue at stake: they seem to fail to recognize the difference between what is the most accurate source of information for valuation of health states and who should get a say regarding policy decisions. Conclusions Our review provides a structured overview of the arguments found in the published literature. It suggests that the overall most accurate source of information for valuation of health states is that based on experience. This suggestion is not conclusive, but what is required of new empirical input to change the balance is to show that those with experience of the state are as a matter of fact not better informed about their own health state than those getting the state described to them. Keywords Described health state • Experienced health state • General public values • Health state valuation • Hypothetical health state • Patient values Olivia Ernstsson and Mimmi Åström have made equal contributions to the paper.

Experience-Based Swedish TTO and VAS Value Sets for EQ-5D-5L Health States

“…There is an ongoing discussion, and considerable disagreement, on whether to use value sets generated from individuals with experience from the health states or from individuals valuing described health states. The main argument favouring experience-based value sets is that individuals with their own experience from the health states are often considerably better informed about them compared with those who value health states based merely on a description [18,[32][33][34][35][36]. This may be considered an advantage when the EQ-5D is used as an integral part of the monitoring and assessment of healthcare interventions in quality registers, a common feature in Sweden [37].…”

“…This may be considered an advantage when the EQ-5D is used as an integral part of the monitoring and assessment of healthcare interventions in quality registers, a common feature in Sweden [37]. The main argument favouring value sets based on described health states stresses that they express social values when elicited from the general population [18,32,[38][39][40]. There are also arguments on both sides in the debate stressing the opposing positions' difficulties in making the valuations because of the effects of adaptation, focusing effects and distortions due to reference point effects [18,32,35,[40][41][42].…”

Elicitation of Norwegian EQ-5D-5L values for hypothetical and experience-based health states based on the EuroQol Valuation Technology (EQ-VT) protocol

“…Such standardisation is a long way off for experienced health state valuation and, as was the case for hypothetical health state valuation up until the last decade, there is considerable variation in the choice of methods. 60 In Norway and other countries, the feasibility of collecting such data is still in its infancy, including choice of sampling strategies, recruitment and how to minimise respondent burden. This study builds on existing methodology in the form of EQ-VT protocol, to assess the feasibility of recruiting potential respondents (including from healthcare settings) for experiencebased health state valuation, respondent burden in the form of completed interviews and data quality.…”

Absence of Long-Term Benefit of Revascularization in Patients With Intermittent Claudication

“…Arguments favouring the argument that patients should evaluate the health states is that they have experience of the actual disease. It is important to know what preferences have been used when using a prescored HRQoL instrument, since the evaluations by patients differ from those of the general public 69 .…”