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Table 6 Summary of findings and implications for future research

From: Patient-relevant outcomes: what are we talking about? A scoping review to improve conceptual clarity

Research question Findings Implications for future research
What terminology is used for supposedly patient-relevant outcomes? - large variety of terms found in the international literature
- inconsistency of terms across and within papers
- possible confusion between patient-relevant and patient-reported
- consistent concept of patient relevance is needed
- standard set of patient-relevant outcomes is needed
- patients must be involved when defining what is relevant to them
- consistency regarding patient relevance will improve the comparability of study results and enable patients to make informed choices
What outcomes are considered to be relevant to patients? - wide range of outcomes found
- commonly disease-specific outcomes
- social dimensions underrepresented
What explanations are provided to justify the relevance of these specific outcomes for patients? - one third of studies without any explanation
- another third refers to the opinion of patients, experts, or caregivers as patient representatives
- outcomes exclusively defined by experts do not necessarily represent patients’ preferences