Validation of a disease-specific quality-of-life questionnaire in a large sample of Dutch achalasia patients

Abstract

The aim of this study was to validate a translated version of an achalasia-specific quality-of-life questionnaire (achalasia-DSQoL) by examining its psychometric properties in a Dutch cohort of achalasia patients. The achalasia-DSQoL was administered to 171 treated achalasia patients together with a clinical symptom score and the RAND-36. Validation methods included factor analysis, known-group techniques, Cronbach's alpha and Spearman rank correlation with other questionnaires and feasibility. About 72.5% of the achalasia patients completed the questionnaires. The achalasia-DSQoL showed evidence of an underlying construct and seems reliable with a Cronbach's alpha of 0.77. The question concerning heartburn did not correlate with the other items on the questionnaire. Known-group techniques demonstrated that the achalasia-DSQoL discriminates between achalasia patients in clinical remission and patients who are not. There was a moderate correlation between the achalasia-DSQoL and the RAND-36 subscales. The questionnaire was easy in use. The translated version of the achalasia-DSQoL is a valid and reliable instrument to compare groups of achalasia patients although the question concerning heartburn should be excluded.

Disease-specific health-related quality of life in patients with esophageal achalasia before and after therapy

“…, 15 although the authors could not validate the measure in an independent series of patients because of the low prevalence of achalasia. Later on, this questionnaire has been validated in Dutch 16 . At the time the questionnaire by Urbach and colleagues was published we were developing our own questionnaire in Spanish language.…”

“…To our knowledge, a disease‐specific HRQoL evaluation before and after therapy has not been ever performed in achalasia. After validating a Dutch version of Urbach’s questionnaire, Frankhuisen and coworkers 16 measured disease‐specific HRQoL in patients with achalasia after therapy, 21 but these patients had not been evaluated before treatment. They concluded that many patients with achalasia remain severely symptomatic after treatment and have decreased HRQoL.…”

“…Studies measuring HRQoL in achalasia are limited and most of them used generic instruments 1–10 or system‐specific measures 3,11–14 . Recently, a disease‐specific HRQoL questionnaire for achalasia was developed in English language, 15 but it has not been validated until more recently in Dutch 16 . Furthermore, the effect of available therapies for achalasia on disease‐specific HRQoL has not been evaluated until now.…”

Development of the Northwestern Esophageal Quality of Life Scale: A Hybrid Measure for Use Across Esophageal Conditions

“…Existing measures of HRQOL for GERD, dysphagia, achalasia, EoE, and Barrett’s esophagus were reviewed for content by three study investigators (TT, LK, and JP): Gastrointestinal Quality of Life Index (18), Quality of Life in Reflux and Dyspepsia Patients (19), GERD Analyzer (20), GERD Assessment Scales (21), Nepean Dyspepsia Index (22), MD Anderson Dysphagia Inventory (23), Laryngopharyngeal Reflux HRQOL scale (24), Reflux-QUAL (25), Eosinophilic Esophagitis QOL-A (7), Achalasia QOL (13), and the GERDQ (26). Relevant themes related to HRQOL were identified, and items from each questionnaire grouped by theme.…”

“…Disease-specific HRQOL measures exist for GERD (11,12), achalasia (13), eosinophilic esophagitis (7), dysphagia (14), and Barrett’s esophagus (15) but are not without limitation—one major concern is that the existing measures combine severity of disease with social/emotional impact, making it difficult to isolate the true impact of disease on HRQOL, as severe symptoms do not necessarily correlate with worsened quality of life (8,16). The second major concern about existing esophageal measures is that most of them are not transportable across clinical and research settings due to length, inefficiency of administration (e.g., having to give a different questionnaire to each presenting group), or they lack the complexity preferred by either the researcher or the clinician.…”