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Published on: December 1, 2023
Preliminary Development of a Patient-Reported Outcome Measure for Inducible Laryngeal Obstruction: Findings From a
Siobhan Ludlow1,2, Stephen Fowler1,2, Jamie Kirkham2
1Manchester University NHS Foundation Trust, Manchester, UK.
Summary
A Delphi study identified 37 key items for a new patient-reported outcome measure (PROM) for inducible laryngeal obstruction (ILO). This measure will assess the physical, social, and psychological impact of living with this breathing disorder.
Area of Science:
- Laryngology
- Patient-Reported Outcome Measures
- Respiratory Medicine
Background:
- Inducible laryngeal obstruction (ILO) is a condition causing intermittent breathing difficulties.
- A validated patient-reported outcome measure (PROM) is needed to assess the impact of ILO.
- Existing research involved patient interviews and a scoping review to generate potential PROM items.
Purpose of the Study:
- To identify relevant items for a new PROM for ILO.
- To evaluate items covering the physical, social, and psychological impact of ILO.
- To inform the development of a patient-centered measure for living with ILO.
Main Methods:
- An international, two-round online Delphi study was conducted.
- Participants included patients with ILO and healthcare professionals.
- Consensus was defined as at least 70% of participants rating items favorably on a 9-point scale.
Main Results:
- 37 out of 80 items (46%) reached consensus for inclusion in the PROM.
- 11 items (14%) were deemed not important, and 32 items (40%) were important but not critical.
- The study involved 46 participants, with high completion rates for both Delphi rounds.
Conclusions:
- Stakeholders reached agreement on 37 items for a PROM for ILO.
- Further research is necessary to establish the psychometric properties of the developed PROM.
- The identified items represent the core impact of living with ILO from a patient perspective.
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