British journal of haematology · 2003
Acquired Pseudoxanthoma elasticum-like syndrome in beta-thalassaemia patients.
СтатьяПоддержка исследования: вне правительства СШАПоддержка службы здравоохранения СШАНазвание и аннотация: Перевод пока не подготовлен
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Hamlin Naomi, Beck Konstanze, Bacchelli Barbara, Cianciulli Paolo, Pasquali-Ronchetti Ivonne, Le Saux Olivier
Аннотация
AIMS: The oropharyngeal dysphagia (OD) poses substantial health risks and affects quality of life. Patient-reported outcome measures (PROMs) are gaining prominence for their crucial role in early detection and adapting rehabilitation and management decisions. This highlights the need for culturally pertinent versions in different languages, especially when addressing conditions like OD. This study aimed to translate, culturally adapt, and assess the test-retest reliability of the Sydney Swallow Questionnaire (SSQ), a PROM designed to detect the risk of OD, for Dutch-speaking populations.
MATERIALS AND METHODS: The SSQ was translated and adapted based on Beaton's guidelines. Validity and test-retest reliability were assessed in 100 healthy participants, with a subset of 30 participants assessed over a 15-day interval. Intra-class correlation coefficient (ICC) values were calculated to determine test-retest reliability.
RESULTS: The SSQ-Dutch was well received and well understood, with a median total score of 65.5/1700. Notably, 95% of participants scored below the established dysphagia risk cut-off, consistent with previous validations. The 15-day interval ICC for the SSQ-Dutch total scores was 0.82 (CI 95%: 0.66-0.91), indicating good reliability. While most questions had moderate-to-good reliability, five showed slightly lower ICC.
CONCLUSION: The SSQ-Dutch emerges as a validated and reliable tool for assessing OD risk in Dutch-speaking individuals. Future studies should evaluate its efficacy in symptomatic populations and consider cultural variations in Dutch-speaking regions.
SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12070-024-04484-3.
MATERIALS AND METHODS: The SSQ was translated and adapted based on Beaton's guidelines. Validity and test-retest reliability were assessed in 100 healthy participants, with a subset of 30 participants assessed over a 15-day interval. Intra-class correlation coefficient (ICC) values were calculated to determine test-retest reliability.
RESULTS: The SSQ-Dutch was well received and well understood, with a median total score of 65.5/1700. Notably, 95% of participants scored below the established dysphagia risk cut-off, consistent with previous validations. The 15-day interval ICC for the SSQ-Dutch total scores was 0.82 (CI 95%: 0.66-0.91), indicating good reliability. While most questions had moderate-to-good reliability, five showed slightly lower ICC.
CONCLUSION: The SSQ-Dutch emerges as a validated and reliable tool for assessing OD risk in Dutch-speaking individuals. Future studies should evaluate its efficacy in symptomatic populations and consider cultural variations in Dutch-speaking regions.
SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12070-024-04484-3.