Core outcome set for studies investigating secretion clearance interventions used in the community by patients with neuromuscular disease (NMD).

Several treatments are used in the community to improve secretion clearance for patients with NMD. However, the optimal intervention remains unclear with further research required. We aimed to develop a core outcome set (COS) for studies investigating secretion clearance interventions used in the community by patients with NMD. We conducted a scoping review, qualitative interviews with patients/family, modified Delphi survey and consensus meeting. We recruited healthcare professionals (G1) and patients/caregivers (G2). Delphi participants were provided a 9-point Likert scale to score outcomes as ‘not important’ (1-3); ‘important but not critical’ (4-6) or ‘critical’ (7-9). Those scored as critical for inclusion were discussed at the consensus meeting using nominal group technique methods to achieve final consensus. Our scoping review included 61 studies, identifying 40 outcomes from these studies and participant interviews(n=13). We recruited 90 participants (G1:76; G2:14) for the Delphi. Sixteen outcomes were voted as critical for inclusion and taken forward to the consensus meeting (20 participants). The final COS includes: · Measured cough strength/power · Burden of respiratory illness · Patient-reported effectiveness of secretion clearance · Patient-reported experience of airway clearance · Quality of life · Adherence to secretion clearance intervention · Adverse events related to secretion clearance intervention This COS should now be included in all trials investigating secretion clearance interventions in the community for NMD patients. Next steps are to identify core measures for use with the COS.