Konrad M Szymanski1, Rosalia Misseri2, Benjamin Whittam3, Sonia-Maria Raposo4, Shelly J King5, Martin Kaefer6, Richard C Rink7, Mark P Cain8. 1. Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, Indianapolis, IN, 46205, USA. szymanko@iupui.edu. 2. Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, Indianapolis, IN, 46205, USA. rmisseri@iupui.edu. 3. Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, Indianapolis, IN, 46205, USA. bwhittam@iupui.edu. 4. Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, Indianapolis, IN, 46205, USA. rapososm@gmail.com. 5. Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, Indianapolis, IN, 46205, USA. sjking@iupui.edu. 6. Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, Indianapolis, IN, 46205, USA. mkaefer@iupui.edu. 7. Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, Indianapolis, IN, 46205, USA. rrink@iupui.edu. 8. Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indiana University School of Medicine, 705 Riley Hospital Dr. #4230, Indianapolis, IN, 46205, USA. mpcain@iupui.edu.
Abstract
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 32 years (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). Bladder and 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.
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 32 years (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). Bladder and 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.
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Authors: Konrad M Szymański; Rosalia Misseri; Benjamin Whittam; Jessica T Casey; David Y Yang; Sonia-Maria Raposo; Shelly J King; Martin Kaefer; Richard C Rink; Mark P Cain Journal: Cent European J Urol Date: 2017-06-23