Reasoning in the valuation of health-related quality of life: A qualitative content analysis of deliberations in a pilot study.

BACKGROUND: Group deliberation can be a pathway to understanding reasons behind judgement decisions. This pilot study implemented a deliberative process to elicit public values about health-related quality of life. In this study, participants deliberated scales and weights for a German adaption of the Short-Form Six-Dimension (SF-6D) Version 2 from a public perspective. OBJECTIVE: This article examines the reasons participants stated for health state valuations and investigates the feasibility of eliciting public reasons for judgement decisions in a deliberative setting. METHODS: The 1-day deliberation was guided by MACBETH as a method of multi-criteria decision analysis and involved qualitative comparisons of SF-6D health states and dimensions. Participants deliberated in parallel small groups and a subsequent plenary assembly. A qualitative content analysis was conducted to assess the value judgements and reasons behind them. RESULTS: A total of 34 students participated in the study. Common reasoning was the level of impairment, marginal benefit, possibility of adjustment and expectation satisfaction. While the small groups agreed on scales for the SF-6D dimensions, the plenary assembly did not reach consensus on one scale and dimension weights. When dimensions were prioritized, these were pain and mental health. CONCLUSIONS: While no consented value set was derived, this pilot study presents a promising approach for eliciting public reasoning behind judgements on health state values. Furthermore, it demonstrates that participants consider diverse motives when valuing health-related quality of life.

Lethal privacy: Quantifying life years lost if the right to informational self-determination guides genetic screening for Lynch syndrome.

Genetic relatives of hereditary colorectal cancer patients with Lynch syndrome (LS) are at risk of cancer. Testing both colorectal cancer patients and relatives of mutation carriers for LS allows targeted prevention. However, this could mean disclosing sensitive health data to family members. In light of potential trade-offs between cost-effectiveness and patient privacy, this study investigates the implications of increasing test uptake in Germany. Out of 22 screening strategies for LS, the non-dominated and current German strategies were assessed from the perspective of the statutory health insurance. Life years gained by increased prevention were estimated with Markov models. The effects and implications of different test uptake rates in index patients and their relatives were investigated by scenario analysis. Privacy limitations could yield health gains of up to 2500 undiscounted life years for first-degree relatives of index patients and substantially improve cost-effectiveness. However, this approach may contradict the right to informational self-determination. This study demonstrates the effect higher LS test uptakes could have on the lives and rights of colorectal cancer patients and their relatives. It shows potential conflicts between the efficient use of health care resources on the one hand and reasonable consideration of patient autonomy on the other.

MCDA-based deliberation to value health states: lessons learned from a pilot study.

BACKGROUND: Health economists have shown a growing interest in deliberation and multi-criteria decision analysis (MCDA) as possible pathways to transparently integrate value judgments in cost-utility analyses. In line with these developments, this study piloted a consensus process to derive a German value set for the Short-Form Six-Dimension (SF-6D). In a conference setting, a group was tasked to deliberate on scores and weights for the SF-6D from the perspective of a self-determined and independent life. METHODS: The one-day consensus conference was based on a deliberative process in combination with the MCDA method MACBETH (Measuring Attractiveness by a Categorical Based Evaluation Technique). According to MACBETH, participants were asked to qualitatively rate pairwise comparisons of SF-6D health states. The scoring within each dimension was conducted in parallel group sessions. Final agreement on the scores as well as weights for the SF-6D dimensions were derived in a subsequent plenary assembly. Results were analyzed using the software M-MACBETH and qualitative content analysis. RESULTS: A total of 34 participants were recruited. While each of the 6 small groups presented a consented score, the plenary assembly reached consensus on all dimensions apart from pain. Concerning dimension weights, some participants favored prioritizing pain and mental health. Others disputed that trade-offs between dimensions and thus assigning weights were not acceptable in a context where this may involve withholding care from someone. As a consequence, no consensus on a value set was reached. Participants identified the group size of the plenary session and the applied weighting procedure as main obstacles to the process. CONCLUSIONS: This pilot study presents a consensus-based approach for valuing health-related quality of life. However, further research is needed on deliberative processes that yield quantifiable results. Future conferences should explore smaller group sizes, longer durations of the deliberative process and alternatives to the additive value function applied in MACBETH.

Health economic evaluations based on routine data in Germany: a systematic review.

BACKGROUND: Improved data access and funding for health services research have promoted the application of routine data to measure costs and effects of interventions within the German health care system. Following the trend towards real world evidence, this review aims to evaluate the status and quality of health economic evaluations based on routine data in Germany. METHODS: To identify relevant economic evaluations, a systematic literature search in the databases PubMed and EMBASE was complemented by a manual search. The included studies had to be full economic evaluations using German routine data to measure either costs, effects, or both. Study characteristics were assessed with a structured template. Additionally, the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) were used to measure quality of reporting. RESULTS: In total, 912 records were identified and 35 studies were included in the further analysis. The majority of these studies was published in the past 5 years (n = 27, 77.1%) and used insurance claims data as a source of routine data (n = 30, 85.7%). The most common method used for handling selection bias was propensity score matching. With regard to the reporting quality, 42.9% (n = 15) of the studies satisfied at least 80% of the criteria on the CHEERS checklist. CONCLUSIONS: This review confirms that routine data has become an increasingly common data source for health economic evaluations in Germany. While most studies addressed the application of routine data, this analysis reveals deficits in considering methodological particularities and in reporting quality of economic evaluations based on routine data. Nevertheless, this review demonstrates the overall potential of routine data for economic evaluations.