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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