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 |