Respiratory medicine · 2026
Cross-cultural adaptation and pilot psychometric validation of a quality-of-life questionnaire for adults with Primary Ciliary Dyskinesia in Spain.
СтатьяВалидационное исследованиеНазвание и аннотация: Перевод в очереди
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Carretero-Vilarroig Lidón, Jaijo Teresa, Lucas Jane S, Behan Laura, Dasí Francisco, Sánchez-Thevenet Paula, Armengot-Carceller Miguel, Reula Ana
Аннотация
BACKGROUND: The Quality-of-Life Primary Ciliary Dyskinesia (QOL-PCD) instrument is the only health-related QOL instrument specific to measuring patient-reported outcomes in PCD patients. The adaptation and validation of the Spanish version of this questionnaire is a crucial step in formulating effective healthcare strategies that will improve the quality of life of these patients within the Spanish context. In this regard, the objective of the study was to cross-culturally adapt and pilot-validate a Spanish version for patients with PCD.
METHODS: A total of 21 Spanish patients with PCD participated in this study. The QOL-PCD was translated and cross-culturally adapted following BESTCILIA Work Package 4 and ISPOR recommendations, respectively. Pilot psychometric validation was explored through internal consistency (Cronbach's α) and construct validity studies. Stability and convergent validity were studied in eight patients. QoL analyses were performed using Pearson correlations and a Welch t-test.
RESULTS: The Spanish QOL-PCD questionnaire included 40 items evaluating the ten original scales. All participants demonstrated a clear understanding of the questionnaire. All scales shown moderate to good internal consistency. Test-retest reliability proved particularly strong for Physical Functioning, Vitality, Emotional Functioning, Role and Social Functioning. SF-36 and SNOT-22 comparisons demonstrated moderate to high correlations. As hypothesized, a positive correlation was found between lower respiratory symptoms and history of lung transplantation.
CONCLUSION: The Spanish QOL-PCD questionnaire has robust psychometric properties and is therefore a validated tool for assessing quality of life (QoL) in Spanish adults with primary ciliary dyskinesia (PCD). This work will improve patient care and inform future PCD research.
METHODS: A total of 21 Spanish patients with PCD participated in this study. The QOL-PCD was translated and cross-culturally adapted following BESTCILIA Work Package 4 and ISPOR recommendations, respectively. Pilot psychometric validation was explored through internal consistency (Cronbach's α) and construct validity studies. Stability and convergent validity were studied in eight patients. QoL analyses were performed using Pearson correlations and a Welch t-test.
RESULTS: The Spanish QOL-PCD questionnaire included 40 items evaluating the ten original scales. All participants demonstrated a clear understanding of the questionnaire. All scales shown moderate to good internal consistency. Test-retest reliability proved particularly strong for Physical Functioning, Vitality, Emotional Functioning, Role and Social Functioning. SF-36 and SNOT-22 comparisons demonstrated moderate to high correlations. As hypothesized, a positive correlation was found between lower respiratory symptoms and history of lung transplantation.
CONCLUSION: The Spanish QOL-PCD questionnaire has robust psychometric properties and is therefore a validated tool for assessing quality of life (QoL) in Spanish adults with primary ciliary dyskinesia (PCD). This work will improve patient care and inform future PCD research.