The development of a patient-reported outcome measure for patients with obstructive sleep apnea: the Patient-Reported Apnea Questionnaire (PRAQ)

J Patient Rep Outcomes. 2017;1(1):14. doi: 10.1186/s41687-017-0021-6. Epub 2017 Dec 15.

Abstract

Background: Obstructive sleep apnea (OSA) is a chronic condition that can have a wide range of consequences for a patient's health-related quality of life. Monitoring aspects of quality of life in clinical practice has the potential to improve the patient-centeredness of care for patients with OSA. The aim of this article is to describe the development of the Patient-Reported Apnea Questionnaire (PRAQ), a patient-reported outcome measure (PROM) that is designed for use in clinical practice on an individual patient level, as well as subsequent outcome measurement on an aggregate level.

Methods: We used the items of available PROMs for OSA to create a new PROM with focus on its applicability in clinical practice. We used a tailored development process to come to a selection of domains and items. Patients and healthcare professionals were intensively involved in the development of the PRAQ via membership of the development team, online surveys and focus groups, as well as two rounds of cognitive validation.

Results: This first version of the PRAQ consists of 43 items and 10 preliminary domains, and covers the aspects of quality of life that healthcare professionals and patients wish to discuss in clinical practice. Patients indicate that PRAQ is comprehensive and that its length is acceptable. Comprehensive patient involvement has ensured good content validity for the PRAQ.

Conclusions: This article shows how a PROM can be developed with a specific focus on its applicability in clinical practice.

Keywords: Instrument development; Obstructive sleep apnea; Patient-reported outcome measure; Quality of life.