A patient-centered approach to developing a quality-of-life questionnaire for chronic oral mucosal diseases

Abstract

Objective: The objective of this study was to develop a self-completion questionnaire measuring quality of life in patients with chronic oral mucosal diseases.

Study design: The stages of development involved the use of both clinical expert input, via a modified Delphi technique, and patient input, via qualitative interviews, in the generation of items. Item reduction was carried out using a judgment method.

Results: Expert input was derived from 5 professors or consultants in oral medicine. Qualitative interviews were conducted with 24 patients during the item-generation phase of development. An initial item pool of 28 items was generated from the clinician and patient input. Importance ratings ranged from 4.0 to 0.44. Items with importance ratings below 1 were reviewed and considered for exclusion. Three items were subsequently excluded and 1 item added resulting in a final 26-item instrument.

Conclusions: This is the first discipline-specific quality-of-life measure developed in the field of oral medicine.