caa a22 4500 606179453 CHVBK 20210128100801.0 cr unu---uuuuu 210128e20151001xx s 000 0 eng 10.1007/s11136-015-0988-5 doi (NATIONALLICENCE)springer-10.1007/s11136-015-0988-5 QUAlity of Life Assessment in Spina bifida for Adults (QUALAS-A): development and international validation of a novel health-related quality of life instrument [Elektronische Daten] [Konrad Szymanski, Rosalia Misseri, Benjamin Whittam, Sonia-Maria Raposo, Shelly King, Martin Kaefer, Richard Rink, Mark Cain] Purpose: Health-related quality of life (HRQOL) is important in spina bifida (SB) management. No clinically useful, comprehensive instrument incorporating bladder/bowel domains exists. We aimed to develop and validate a self-reported QUAlity of Life Assessment in Spina bifida for Adults (QUALAS-A). Methods: We drafted the 53-question pilot instrument using a comprehensive item generation/refinement process. It was administered to an international convenience sample of adults with SB and controls recruited online via social media and in person at outpatient SB clinics (January 2013-September 2014). Final questions were determined by: clinical relevance, high factor loadings and domain psychometrics in an Internal Validation Sample randomly selected from United States participants (n=250). External validity was evaluated in United States and International External Validation Samples (n=165 and n=117, respectively). Adults with SB completed the validated general WHOQOL-BREF and International Consultation on Incontinence Questionnaire (ICIQ). Results: Mean age of 532 participants was 32years (32.7% males, 85.0% Caucasian), similar to 116 controls (p≥0.08). There were 474 online and 58 clinical participants (61.1% eligible). Face validity and content validity of the 3-domain, 15-question QUALAS-A were established by patients, families and experts. Internal consistency and test-retest reliability were high for all domains (Cronbach's alpha≥0.70, ICC≥0.77). Correlations between QUALAS-A and WHOQOL-BREF were low (r≤0.60), except for high correlations with Health and Relationships domain (0.63≤r≤0.71). Bladderand Bowel domain had a high correlation with ICIQ (r=−0.70). QUALAS-A scores were lower among adults with SB than without (p<0.0001). QUALAS-A had good statistical properties in both External Validation Samples (Cronbach's alpha 0.68-0.77). Conclusions: QUALAS-A is a short, valid HRQOL tool for adults with SB. Springer International Publishing Switzerland, 2015 Quality of life nationallicence Spinal dysraphism nationallicence Meningomyelocele nationallicence Adult nationallicence Urinary incontinence nationallicence Fecal incontinence nationallicence HRQOL : Health-related quality of life nationallicence QOL : Quality of life nationallicence SB : Spina bifida nationallicence QUALAS-A : QUAlity of Life Assessment in Spina bifida for Adults nationallicence WHOQOL-BREF : World Health Organization Quality of Life instrument nationallicence SD : Standard deviation nationallicence Szymanski Konrad Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut Misseri Rosalia Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut Whittam Benjamin Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut Raposo Sonia-Maria Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut King Shelly Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut Kaefer Martin Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut Rink Richard Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut Cain Mark Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut Quality of Life Research Springer International Publishing 24/10(2015-10-01), 2355-2364 0962-9343 24:10<2355 2015 24 11136 https://doi.org/10.1007/s11136-015-0988-5 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-015-0988-5 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Szymanski Konrad Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut NATIONALLICENCE 700 1- Misseri Rosalia Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut NATIONALLICENCE 700 1- Whittam Benjamin Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut NATIONALLICENCE 700 1- Raposo Sonia-Maria Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut NATIONALLICENCE 700 1- King Shelly Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut NATIONALLICENCE 700 1- Kaefer Martin Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut NATIONALLICENCE 700 1- Rink Richard Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut NATIONALLICENCE 700 1- Cain Mark Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, 46205, Indianapolis, IN, USA aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/10(2015-10-01), 2355-2364 0962-9343 24:10<2355 2015 24 11136