Implications of Normative Choices in Rating and Preference-Based Approaches to Valuing Health Outcomes

Governments and health systems allocate limited healthcare resources informed by standardized measures of health-related quality of life to compare the value of different treatments. The processes of determining these values and translating subjective human experiences into scores to inform policy decisions affecting millions of people involve choices that cannot be resolved by evidence alone: whose perspectives should determine how health states are valued? Should children and adolescents have a voice in valuing their own health? When a questionnaire asks someone to rate their wellbeing, how does the specific wording of that question impact what is being measured? This dissertation examined these normative choices through four studies using qualitative, quantitative, and deliberative methods. The first engaged a diverse panel of US stakeholders on normative considerations in valuing children's health, illustrating the difficulty of reaching consensus among groups with diverse expertise and priorities. The second examined implications of combining adolescent and adult preferences in a statistical model, highlighting a distinction between procedural inclusion in a study and the degree to which preferences substantively influence resulting values. The third explored how adults with chronic illness, caregivers, and social care users interpreted different specifications of a self-rated health question. Respondents drew meaningful qualitative distinctions, yet quantitative ratings were highly correlated. The fourth further examined whether construct specification produces measurable differences in a larger sample across three countries, finding that constructs diverged in associations with dimensions of health and wellbeing despite eliciting similar overall ratings. Across all four studies, empirical evidence was informational but could not resolve the normative choices at hand. Different types of empirical evidence served different functions, reinforcing the importance of integrating quantitative, qualitative, and deliberative evidence, while also making explicit the criteria, trade-offs, and stakeholder interests that guide decisions affecting allocation of health resources where they are most needed.

Author dc:creator

• Jonathan L. Nazari (24399551)

• Health Outcomes
• Health-Related Quality of Life
• Health Valuation
• Health Preferences

Statement dc:rights

• In Copyright

DOI dc:identifier

https://doi.org/10.25417/uic.32994002.v1

OAI identifier oai:identifier

oai:figshare.com:article/32994002