Development of Two Patient Self-Reported Measures on Functional Health Status (FOD) and Health-Related Quality of Life (QOD) in Adults with Oropharyngeal Dysphagia Using the Delphi Technique

Abstract

Introduction. Patient self-evaluation is an important aspect in the assessment of dysphagia and comprises both Functional Health Status (FHS) and Health-Related Quality of Life (HR-QoL). As many measures combine both FHS and HR-QoL, disease-related functioning cannot be distinguished from disease-related quality of life as experienced by the patient. Moreover, current patient self-reported measures are limited by poor and incomplete data on psychometric properties. Objective. This study aimed to establish content validity for the development of two new self-reported measures on FHS and HR-QoL in adults with oropharyngeal dysphagia (OD), in line with the psychometric taxonomy and guidelines from the COSMIN group (COnsensus-based Standards for the selection of health Measurement INstruments). Methods. Using the Delphi technique, international expert consensus was achieved; participants and patients with dysphagia evaluated relevance, comprehensiveness, and comprehensibility of definitions of relevant constructs (i.e., dysphagia, FHS and HR-QoL) and potential items. Results. A total of 66 Delphi participants from 45 countries achieved consensus across two rounds. The Delphi study resulted in two prototype measures, the Functional health status measure of Oropharyngeal Dysphagia (FOD) and the health-related Quality of life measure of Oropharyngeal Dysphagia (QOD), consisting of 37 and 25 items, respectively. Minimal revisions were required based on feedback by patients. Conclusions. This study provides evidence of good content validity for both newly developed prototype measures FOD and QOD. Future studies will continue the process of refining the measures, and evaluate the remaining psychometric properties using both Classic Test Theory (CTT) and Item Response Theory (IRT) models.

A Psychometric Evaluation of the Dysphagia Handicap Index Using Rasch Analysis

“…During the instrument development of patient self-report measures for dysphagia, careful consideration should be given to which constructs should be targeted and whether including the constructs functional health status and health-related quality of life may suffice [7]. In this context, functional health status refers to the impact of dysphagia on the ability to perform tasks in multiple domains (including physical, social, role, and psychological functioning) and aims to quantify the symptomatic severity and (loss of) function due to dysphagia and/or treatment and the impacts on daily life as experienced by patients at a particular point in time [7]. HR-QoL refers to the unique personal perception of someone's health, taking into account social, functional, and psychological issues [9].…”

“…Apart from affecting physical well-being, dysphagia has a major impact on a person's quality of life [5,6]. Therefore, self-report measures are important for dysphagia assessment [7,8].…”

“…FHS is the impact of a given disease on the ability to perform tasks in multiple domains (including physical, social, role, and psychological functioning). The FHS aims to quantify the symptomatic severity and (loss of) function due to the disease and/or treatment and the effects on daily life as experienced by the individual at a particular point in time [7]. HR-QoL refers to the unique personal perception of someone's health, considering social, functional, and psychological issues [9].…”

Reliability and Validity of Non-Instrumental Clinical Assessments for Adults with Oropharyngeal Dysphagia: A Systematic Review

“…Oropharyngeal dysphagia (OD) is a symptom or a collection of symptoms of one or more underlying anatomical abnormalities or impairments and disorders in cognitive, sensory, and motor acts involved with transferring food and liquids from the mouth to the stomach [ 1 ]. OD may result in reduced efficiency and safety of swallowing, failure to maintain hydration and nutrition, risk of choking and aspiration leading to pulmonary complications, and reduced quality of life [ 2 ].…”

Development of a Visuoperceptual Measure for Fiberoptic Endoscopic Evaluation of Swallowing (V-FEES) in Adults with Oropharyngeal Dysphagia: An International Delphi Study

“…Dysphagia or swallowing disorders are a frequent symptom of one or more underlying anatomical abnormalities or impairments and disorders in cognitive, sensory and motor acts involved in transporting food and liquids from the mouth to the stomach [ 9 ]. Dysphagia can lead to reduced efficiency and safety of swallowing, failure to maintain hydration and nutrition, risk of choking and aspiration leading to pulmonary complications, and reduced quality of life [ 9 , 10 ]. Dysphagia may refer to oropharyngeal disorders involving upper digestive tract problems and esophageal disorders involving lower digestive tract problems (or a combination of these).…”