Translation and validation of the Korean version of the QUAlity of Life Assessment in Spina bifida for Teenagers (QUALAS-T-K)

References

• Copp AJ, Adzick NS, Chitty LS, et al. Spina bifida. Nat Rev Dis Primers. 2015;1:15007. doi: 10.1038/nrdp.2015.7.
   PubMed Web of Science ®Google Scholar
• Phillips LA, Burton JM, Evans SH. Spina bifida management. Curr Probl Pediatr Adolesc Health Care. 2017;47(7):173–177. doi: 10.1016/j.cppeds.2017.06.007.
   PubMed Web of Science ®Google Scholar
• Sawin KJ, Liu T, Ward E, et al. The National Spina Bifida Patient Registry: profile of a large cohort of participants from the first 10 clinics. J Pediatr. 2015;166(2):444–450.e1. e441. doi: 10.1016/j.jpeds.2014.09.039.
   PubMed Web of Science ®Google Scholar
• Liu T, Ouyang L, Thibadeau J, et al. Longitudinal study of bladder continence in patients with spina bifida in the National Spina Bifida Patient Registry. J Urol. 2018;199(3):837–843. doi: 10.1016/j.juro.2017.11.048.
   PubMed Web of Science ®Google Scholar
• Lindquist B, Jacobsson H, Strinnholm M, et al. A scoping review of cognition in spina bifida and its consequences for activity and participation throughout life. Acta Paediatr. 2022;111(9):1682–1694. doi: 10.1111/apa.16420.
   PubMed Web of Science ®Google Scholar
• Patel SK, Staarmann B, Heilman A, et al. Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood. Neurosurg Focus. 2019;47(4):E16. doi: 10.3171/2019.7.FOCUS19441.
   PubMed Web of Science ®Google Scholar
• Bakaniene I, Prasauskiene A, Vaiciene-Magistris N. Health-related quality of life in children with myelomeningocele: a systematic review of the literature. Child Care Health Dev. 2016;42(5):625–643. doi: 10.1111/cch.12367.
   PubMed Web of Science ®Google Scholar
• Sawin KJ, Brei TJ, Houtrow AJ. Quality of life: guidelines for the care of people with spina bifida. J Pediatr Rehabil Med. 2020;13(4):565–582. doi: 10.3233/PRM-200732.
   PubMed Web of Science ®Google Scholar
• Witt S, Bloemeke J, Bullinger M, et al. Agreement between mothers’, fathers’, and children’s’ ratings on health-related quality of life in children born with esophageal atresia – a German Cross-Sectional Study. BMC Pediatr. 2019;19(1):330. doi: 10.1186/s12887-019-1701-6.
   PubMed Web of Science ®Google Scholar
• Germain N, Aballéa S, Toumi M. Measuring health-related quality of life in young children: how far have we come? J Mark Access Health Policy. 2019;7(1):1618661. doi: 10.1080/20016689.2019.1618661.
   PubMedGoogle Scholar
• Ambartsumyan L, Rodriguez L. Bowel management in children with spina bifida. J Pediatr Rehabil Med. 2018;11(4):293–301. doi: 10.3233/PRM-170533.
   PubMed Web of Science ®Google Scholar
• Szymański KM, Misseri R, Whittam B, et al. Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida. Cent Eur J Urol. 2017;70:306–313.
   PubMedGoogle Scholar
• Szymanski KM, Misseri R, Whittam B, et al. QUAlity of Life Assessment in Spina bifida for Adults (QUALAS-A): development and international validation of a novel health-related quality of life instrument. Qual Life Res. 2015;24(10):2355–2364. doi: 10.1007/s11136-015-0988-5.
   PubMed Web of Science ®Google Scholar
• Szymanski KM, Misseri R, Whittam B, et al. Quality of Life Assessment in Spina bifida for Children (QUALAS-C): development and validation of a novel health-related quality of life instrument. Urology. 2016;87:178–184. doi: 10.1016/j.urology.2015.09.027.
   PubMed Web of Science ®Google Scholar
• Szymanski KM, Cain MP, Whittam B, et al. Incontinence affects health-related quality of life in children and adolescents with spina bifida. J Pediatr Urol. 2018;14(279):279.e1–279.e8.
   PubMedGoogle Scholar
• Fremion E, Madey R, Staggers KA, et al. Factors associated with self-management independence and quality of life for adolescents and young adults with spina bifida engaged in a guideline-based transition clinic. J Pediatr Rehabil Med. 2021;14(4):631–641. doi: 10.3233/PRM-200758.
   PubMed Web of Science ®Google Scholar
• Kawahara T, Sugita Y, Momose H, et al. Development and validation of the Japanese version of the Quality of Life Assessment of Spina bifida in Teenagers (QUALAS-T-J). Pediatr Int. 2019;61(12):1232–1238. doi: 10.1111/ped.14003.
   PubMed Web of Science ®Google Scholar
• Pompermaier J, Andrade MC, Cruz MLD, et al. Translation and validation of the Brazilian version of the “quality of life assessment in Spina bifida” questionnaire for children and teenagers. Rev Paul Pediatr. 2021;39:e2019312. doi: 10.1590/1984-0462/2021/39/2019312.
   PubMedGoogle Scholar
• Choi EK, Im YJ, Han SW. Bowel management and quality of life in children with spina bifida in South Korea. Gastroenterol Nurs. 2017;40(3):208–215. doi: 10.1097/SGA.0000000000000135.
   PubMed Web of Science ®Google Scholar
• Choi EK, Ji Y, Han SW. Sexual function and quality of life in young men with spina bifida: could it be neglected aspects in clinical practice? Urology. 2017;108:225–232. doi: 10.1016/j.urology.2016.11.052.
   PubMed Web of Science ®Google Scholar
• Ravens-Sieberer U, Gosch A, Rajmil L, et al. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res. 2005;5(3):353–364. doi: 10.1586/14737167.5.3.353.
   PubMedGoogle Scholar
• Ravens-Sieberer U, Auquier P, Erhart M, et al. The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Qual Life Res. 2007;16(8):1347–1356. doi: 10.1007/s11136-007-9240-2.
   PubMed Web of Science ®Google Scholar
• Hong SD, Yang JW, Jang WS, et al. The KIDSCREEN-52 quality of life measure for children and adolescents (KIDSCREEN-52-HRQOL): reliability and validity of the Korean version. J Korean Med Sci. 2007;22(3):446–452. doi: 10.3346/jkms.2007.22.3.446.
   PubMed Web of Science ®Google Scholar
• Kang H. Sample size determination and power analysis using the G*power software. J Educ Eval Health Prof. 2021;18:17. doi: 10.3352/jeehp.2021.18.17.
   PubMed Web of Science ®Google Scholar
• Mundfrom DJ, Shaw DG, Ke TL. Minimum sample size recommendations for conducting factor analyses. Int J Test. 2005;5(2):159–168. doi: 10.1207/s15327574ijt0502_4.
   Google Scholar
• Nunnally JC, Bernstein IH. Psychometric theory. New York: McGraw-Hill; 1994.
   Google Scholar
• Zumbo BD, Gadermann AM, Zeisser C. Ordinal versions of coefficients alpha and theta for Likert rating scales. J Mod Appl Stat Methods. 2007;6:21–29.
   Google Scholar
• Sijtsma K. On the use, the misuse, and the very limited usefulness of Cronbach’s alpha. Psychometrika. 2009;74(1):107–120. doi: 10.1007/s11336-008-9101-0.
   PubMed Web of Science ®Google Scholar
• Graham JM. Congeneric and (essentially) tau-equivalent estimates of score reliability: what they are and how to use them. Educ Psychol Meas. 2006;66(6):930–944. doi: 10.1177/0013164406288165.
   Web of Science ®Google Scholar
• Streiner DL. Starting at the beginning: an introduction to coefficient alpha and internal consistency. J Pers Assess. 2003;80(1):99–103. doi: 10.1207/S15327752JPA8001_18.
   PubMed Web of Science ®Google Scholar
• Revelle W, Zinbarg RE. Coefficients alpha, beta, omega, and the glb: comments on Sijtsma. Psychometrika. 2009;74(1):145–154. doi: 10.1007/s11336-008-9102-z.
   Web of Science ®Google Scholar
• Holgado-Tello FP, Chacón-Moscoso S, Barbero-García I, et al. Polychoric versus Pearson correlations in exploratory and confirmatory factor analysis of ordinal variables. Qual Quant. 2010;44(1):153–166. doi: 10.1007/s11135-008-9190-y.
   Web of Science ®Google Scholar
• Kiwanuka F, Kopra J, Sak-Dankosky N, et al. Polychoric correlation with ordinal data in nursing research. Nurs Res. 2022;71(6):469–476. doi: 10.1097/NNR.0000000000000614.
   PubMed Web of Science ®Google Scholar
• Hu L, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Model. 1999;6(1):1–55. doi: 10.1080/10705519909540118.
   Web of Science ®Google Scholar
• Hooper D, Coughlan J, Mullen M. Structural equation modelling: guidelines for determining model fit. Electron J Business Res Methods. 2008;6:53–60.
   Web of Science ®Google Scholar
• MacCallum RC, Browne MW, Sugawara HM. Power analysis and determination of sample size for covariance structure modeling. Psychol Methods. 1996;1(2):130–149. doi: 10.1037/1082-989X.1.2.130.
   Web of Science ®Google Scholar
• Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics. 1977;33(1):159–174. doi: 10.2307/2529310.
   PubMed Web of Science ®Google Scholar
• Ko J, Lamichhane DK, Kim H, et al. Trends in the prevalences of selected birth defects in Korea (2008–2014). Int J Environ Res Public Health. 2018;15:923. doi: 10.3390/ijerph15050923.
   PubMed Web of Science ®Google Scholar
• Choi EK, Van Riper M, Jang M, et al. Adaptation and resilience in families of children with spina bifida in South Korea. Rehabil Nurs J. 2018;43(6):343–350. doi: 10.1097/rnj.0000000000000200.
   PubMed Web of Science ®Google Scholar
• Moon C, Travaglino GA, Uskul AK. Social value orientation and endorsement of horizontal and vertical individualism and collectivism: an exploratory study comparing individuals from North America and South Korea. Front Psychol. 2018;9:2262. doi: 10.3389/fpsyg.2018.02262.
   PubMed Web of Science ®Google Scholar
• Triandis HC. Collectivism and individualism: cultural and psychological concerns. In: Wright JD, editor. International encyclopedia of the social & behavioral sciences. 2nd ed. Oxford: Elsevier; 2015. p. 206–210.
   Google Scholar
• Park JY. Disability discrimination in South Korea: routine and everyday aggressions toward disabled people. Disabil Soc. 2017;32(6):918–922. doi: 10.1080/09687599.2017.1321223.
   Web of Science ®Google Scholar
• Kim SJ, Kang KA. Meaning of life for adolescents with a physical disability in Korea. J Adv Nurs. 2003;43(2):145–155. doi: 10.1046/j.1365-2648.2003.02689_1.x.
   PubMed Web of Science ®Google Scholar
• Choi EK, Bae E, Ji Y, et al. Discrepancies in educational needs for transition in adolescents and young adults with spina bifida in South Korea: use of the Borich Needs Assessment Model. J Pediatr Nurs. 2021;61:318–324. doi: 10.1016/j.pedn.2021.08.018.
   PubMed Web of Science ®Google Scholar
• Yun H, Yang SH, Ji Y, et al. Cross-cultural adaptation and validation of the Korean version of the Quality of Life Assessment in Spina bifida for Children (QUALAS-C-K). Disabil Rehabil. 2023;1–6. doi: 10.1080/09638288.2023.2207222.
   Google Scholar
• Yang SH, Ji Y, Lee YS, et al. Cross-cultural adaptation and validation of the Korean modified version of the QUAlity of Life Assessment in Spina bifida for Young Adults (QAULAS-YA-Km). Disabil Rehabil. 2022;1–7. doi: 10.1080/09638288.2022.2118378.
   Google Scholar