Understanding PROMs: From Traditional Measures to Patient-Centered Instruments
Summary:The VBHC Suisse Practitioners' Working Group gathered to deepen their understanding of patient-reported outcome measures (PROMs), exploring the limitations of traditional instruments, the role of patient preference in outcome measurement, and the importance of context-driven tool selection. The session featured insights from an expert in quantitative psychology and health measurement, emphasizing a shift towards more patient-centered and meaningful data collection in primary care.
Table of Contents
Introduction: Why Not All PROMs Are the Same
Traditional Questionnaires: SF-12, SF-36, and Their Pitfalls
The Role of Purpose in Tool Selection
Preference-Based Instruments vs. Classical Tools
Measurement Theory Basics: From Likert to Item Response Theory
Health Utilities and Composite Indices
Real-World Applications: Chronic Pain, Transplant Patients
Patient Involvement in Instrument Development
The Challenge of Policy-Level Decision-Making
The Future of PROMs in Value-Based Healthcare
Key Takeaways
1. Not All PROMs Are Fit for All PurposesThe session challenged the assumption that one generic questionnaire can serve all contexts. For instance, the SF-12 is widely used but lacks the depth to assess certain patient needs—especially when it comes to the severity and impact of symptoms.
2. Classical vs. Preference-Based ToolsTraditional questionnaires often assume equal weight across domains (e.g., mobility, pain, social functioning), while preference-based tools assign different values based on patient experience. These weights matter when combining outcomes across domains for decision-making.
3. The Case for Patient-Centered DesignMost widely used PROMs were developed by experts, not patients. The speaker emphasized the value of co-developing instruments with patients, sharing examples where key symptoms like fatigue were missed entirely in expert-developed tools.
4. Simplicity with Scientific RigorThe goal is to design PROMs that are both intuitive for patients and scientifically robust. The session introduced new tools and apps that allow patients to rate and prioritize their symptoms in a user-friendly way, while also generating data that can be used for complex statistical analysis.
5. Beyond Clinical Use: Relevance for PolicyPROMs data is increasingly used to inform reimbursement and public health decisions. However, not all instruments are suitable for these high-level purposes. Tools that generate utility values (e.g., EQ-5D) are preferred by health economists and policymakers.
6. The Dutch Experience: Cost-Effectiveness vs. RealityUsing the Netherlands as an example, the discussion highlighted how decisions about reimbursement often involve political and social considerations—not just cold cost-effectiveness analyses.