Qualitative assessment of the suitability of the Dysphagia Symptom Questionnaire to monitor dysphagia in children aged 7-10 years with eosinophilic esophagitis

被引:0
|
作者
Pokrzywinski, Robin M. [1 ]
Goodwin, Bridgett [2 ]
Dellon, Evan S. [3 ]
Kodroff, Ellyn [4 ]
Brooks, Anne [1 ]
Bailey, Adam [1 ]
Williams, James [2 ]
Desai, Nirav K. [2 ]
机构
[1] Evidera, 7101 Wisconsin Ave 1400, Bethesda, MD 20814 USA
[2] Takeda Dev Ctr Amer Inc, Cambridge, MA USA
[3] Univ N Carolina, Div Gastroenterol & Hepatol, Dept Med, Ctr Esophageal Dis & Swallowing, Chapel Hill, NC USA
[4] Campaign Urging Res Eosinophil Dis, Lincolnshire, IL USA
关键词
Dysphagia; Qualitative assessment; Patient-reported outcomes; Esophageal eosinophilia; Pediatric; Electronic device; RECOMMENDATIONS; EPIDEMIOLOGY; INSTRUMENTS; GUIDELINES; VALIDITY;
D O I
10.1186/s41687-023-00646-z
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
BackgroundThe Dysphagia Symptom Questionnaire (DSQ) is a patient-reported outcome measure that assesses the frequency and severity of dysphagia in patients with eosinophilic esophagitis (EoE); however, it has only been validated for use in patients with EoE aged 11-40 years. This study examined the content validity of the DSQ and its usability on an electronic handheld device in children aged 7-10 years with EoE.MethodsIn this qualitative, observational cohort study, participants were recruited to partake in two rounds of interviews. During visit 1, a cognitive interview examined EoE-associated concepts and the appropriateness of the DSQ for assessing dysphagia. Participants completed the DSQ daily for 2 weeks, and DSQ scores were calculated. After 2 weeks, a second interview assessed the usability of the DSQ on the electronic device and the burden associated with completing it daily.ResultsOverall, 16 participants were included (aged 7-8 years: n = 8; aged 9-10 years: n = 8); most were male (75%) and white (81%), and the mean (standard deviation [SD]) age was 8.4 (1.3) years. The most commonly reported EoE-associated concept was 'trouble with swallowing' (63% [10/16]). Most participants reported that the questions were 'easy to complete' and 'relevant to someone with EoE and dysphagia'. Overall, participants reported understanding the questions and associated responses; however, further probing demonstrated inconsistent comprehension. Key challenging concepts included 'solid food', 'trouble swallowing', 'vomit', and 'relief'; some participants also reported difficulty differentiating between pain levels (31% [4/13]). Most caregivers reported that their child had experienced dysphagia (94% [15/16]); however, mean (SD) DSQ scores over the study period were low (7.3 [7.4]), suggesting infrequent and mild dysphagia, or a lack of comprehension of the questions. Most participants reported that completing the DSQ on the electronic device was easy (93% [14/15]) and they would be willing to complete it for longer than 2 weeks (73% [11/15]).ConclusionsDifficulties with comprehension and comprehensiveness suggest that the DSQ may not be sufficiently comprehensive for use in all patients in this population, and wording/phrasing changes are required before use in a clinical trial setting.
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页数:14
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