Abstract

Abstract Purpose Core Outcome Sets (COS) are agreed sets of outcomes to be used in all trials that evaluate the effect of interventions. This report considers the added value of including grey and qualitative literature in a study to identify COSs of family-focused interventions for CM and DVA. Methods We identified outcomes of interventions for DVA or CM through systematically searching 12 academic databases and 86 organisation websites, leading to the inclusion of 485 full-text reports across 6 reviews. We developed a candidate outcome longlist comprising 347 extracted outcomes. Results We identified 87% (282/347) of candidate outcomes from the grey and qualitative literature, and 37% (127/347) from the trial literature. Of the candidate outcomes on the longlist, 22% (75/347) were identified solely from the grey or qualitative literature and 7% (26/347) from trial literature. Three of the eight outcomes in the final core outcome sets may have been missed if grey or qualitative literature had not been searched. Conclusions The qualitative and grey literature adds DVA and CM outcomes that are relevant to survivor perspectives but not reported in trials; this had an impact on the final COSs. It is important for COS developers to consider what they may be missing if they do not search the qualitative and grey literature.

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