Preliminary Development of a Patient-Reported Outcome Measure for Inducible Laryngeal Obstruction: Findings From a...

Inducible laryngeal obstruction (ILO) is a laryngeal disorder that intermittently affects breathing. A psychometrically robust patient-reported outcome measure for ILO is required. We have generated items from individual patient interviews and a scoping review. The objective of this study is to ascertain which items covering the physical, social, and psychological impact of ILO were relevant for measuring the impact of living with ILO to inform a new patient-reported outcome measure.

An international two-round online Delphi study was conducted amongst a group including patients with ILO and relevant health care professionals. Participants judged the relevance of 80 items about the impact of ILO on a 9-point scale. We defined consensus as a minimum of 70% of participants rating items as 7-9. Participants were asked to give a reason for their ratings.

Forty-six participants registered for the Delphi survey, with 37/46 (80%) and 29/37 (78%) completing rounds one and two, respectively. Participants were patients living with ILO (63%), respiratory physicians (10%), speech and language therapists (16%), physiotherapists (5%), a psychologist (3%) and a nurse (3%). Consensus was reached after round two for 37/80 (46%) to include, 11/80 (14%) not important to include and 32/80 (40%) being important but not critical to include [therefore 43/80 (54%) excluded].

Stakeholders agreed on 37 items that should be included in a PROM for ILO. Further studies to establish the psychometrics of a PROM based on these items are required.