The purpose of this study was to evaluate associations of ethnicity and adaptive function with health-related quality of life (HRQOL) in youths with spina bifida myelomeningocele (SBM).
METHODS:
Participants included Hispanic (n = 75) and non-Hispanic White (n = 86) children and adolescents with SBM. Participants completed ratings of adaptive function and SBM-specific HRQOL. A series of linear multiple regression models was computed to investigate whether ethnicity moderates the relation between adaptive function and HRQOL.
RESULTS:
Results showed that greater adaptive function was associated with higher HRQOL. While no relations were found between ethnicity and HRQOL, a significant interaction was observed between adaptive function and ethnicity over and above other terms. Although groups did not differ on HRQOL at lower levels of adaptive function, Hispanic participants rated higher HRQOL relative to non-Hispanic White participants at higher levels of adaptive function. Further analysis showed this was true of both nonmotor and motor aspects of adaptive function.
CONCLUSION:
Results suggested complex relations between ethnicity and adaptive function with HRQOL, highlighting the importance of optimizing adaptive functioning in youth with SBM.
Centers for Disease Control and Prevention. What is spina bifida? [Internet]. Centers for Disease Control and Prevention; 2020 [updated 2020 Sep 3; cited 2022 Nov 3]. Available from: https://www.cdc.gov/ncbddd/spinabifida/facts.html
3.
FletcherJM, BreiTJ. Introduction: spina bifida—a multidisciplinary perspective. Dev Disabil Res Rev. 2010;16(1):1–5. doi: 10.1002/ddrr.101
WassermanRM, HolmbeckGN. Profiles of neuropsychological functioning in children and adolescents with spina bifida: associations with biopsychosocial predictors and functional outcomes. J Int Neuropsychol Soc. 2016;22(8):804–15. doi: 10.1017/S1355617716000680
CanfieldMA, MaiCT, WangY, et al. The association between race/ethnicity and major birth defects in the United States, 1999–2007. Am J Public Health. 2014;104(9):14–23. doi: 10.2105/AJPH.2014.302098
8.
WilliamsLJ, RasmussenSA, FloresA, KirbyRS, EdmondsLD. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995–2002. Pediatrics. 2005;116(3):580–6. doi: 10.1542/peds.2005-0592
9.
SmithK, FreemanKA, Neville-JanA, MizokawaS, AdamsE. Cultural considerations in the care of children with spina bifida. Pediatr Clin North Am. 2010;57(4):1027–40. doi: 10.1016/j.pcl.2010.07.019
10.
Centers for Disease Control and Prevention (CDC). Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995–2005 [Internet]. Atlanta (GA): Centers for Disease Control and Prevention (CDC); 2009 [updated 2009 Jan 7; cited 2022 Nov 3]. Available from: https://www.cdc.gov/mmwr/preview/mmwrhtml/mma2.htm
11.
PapadakisJL, AcevedoL, RamirezS, SternA, DriscollCF, HolmbeckGN. Psychosocial and family functioning among Latino youth with spina bifida. J Pediatr Psychol. 2018;43(2):105–19. doi: 10.1093/jpepsy/jsx096
12.
CastilloJ, GandyJ, ViachaslauB, CastilloH. Language and Latino immigrants living with spina bifida: social determinants of health –the missing dimension in quality of life research. J Pediatr Rehabil Med. 2019;12(4):345–59. doi: 10.3233/PRM-180586
13.
RocqueBG, BishopER, ScoginMA, et al. Assessing health-related quality of life in children with spina bifida. J Neurosurg Pediatr. 2015;15(2):144–9. doi: 10.3171/2014.10.PEDS1441
14.
MurrayCB, HolmbeckGN, RosAM, FloresDM, MirSA, VarniJW. A longitudinal examination of health-related quality of life in children and adolescents with spina bifida. J Pediatr Psychol. 2015;40(4):419–30. doi: 10.1093/jpepsy/jsu098
15.
BierJ-AB, PrinceA, TremontM, MsallM. Medical, functional, and social determinants of health-related quality of life in individuals with myelomeningocele. Dev Med Child Neuro. 2005;47(9):609–12. doi: 10.1017/S0012162205001209
16.
KarmurBS, KulkarniAV. Medical and socioeconomic predictors of quality of life in myelomeningocele patients with shunted hydrocephalus. Childs Nerv Syst. 2018;34(4):741–7. doi: 10.1007/s00381-017-3691-8
17.
RamachandraP, PalazziKL, SkalskyAJ, MariettiS, ChiangG. Shunted hydrocephalus has a significant impact on quality of life in children with spina bifida. PM R. 2013;5(10):825–31. doi: 10.1016/j.pmrj.2013.05.011
18.
SchoenmakersMAGC, UiterwaalCSPM, GulmansVAM, GooskensRHJM, HeldersPJM. Determinants of functional independence and quality of life in children with spina bifida. Clin Rehabil. 2005;19(6):677–85. doi: 10.1191/0269215505cr865oa
19.
FletcherJM. Alternative approaches to outcomes assessment: beyond psychometric tests. Pediatr Blood Cancer. 2014;61(10):1734–8. doi: 10.1002/pbc.24824
20.
DanielssonAJ, BartonekÅ, LeveyE, McHaleK, SponsellerP, SarasteH. Associations between orthopaedic findings, ambulation and health-related quality of life in children with myelomeningocele. J Child Orthop. 2008;2(1):45–54. doi: 10.1007/s11832-007-0069-6
21.
OlesenJD, KiddooDA, MetcalfePD. The association between urinary continence and quality of life in paediatric patients with spina bifida and tethered cord. Paediatr Child Health. 2013;18(7):32–8. doi: 10.1093/PCH/18.7.E32
22.
SawinKJ, BellinMH. Quality of life in individuals with spina bifida: a research update. Dev Disabil Res Rev. 2010;16(1):47–59. doi: 10.1002/ddrr.96
Blue-BanningM, TurnbullAP, PereiraL. Hispanic youth/young adults with disabilities: parents’ visions for the future. Res Pract Pers Sev Disabil. 2002;27(3):204–19. doi: 10.2511/rpsd.27.3.204
HolmbeckGN, GreenleyRN, CoakleyRM, GrecoJ, HagstromJ. Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions. J Dev Behav Pediatr. 2006;27(3):249–77. doi: 10.1097/00004703-200606000-00012
27.
DevineKA, HolbeinCE, PsihogiosAM, AmaroCM, HolmbeckGN. Individual adjustment, parental functioning, and perceived social support in Hispanic and non-Hispanic white mothers and fathers of children with spina bifida. J Pediatr Psychol. 2012;37(7):769–78. doi: 10.1093/jpepsy/jsr083
28.
SwartwoutMD, GarnaatSL, MyszkaKA, FletcherJM, DennisM. Associations of ethnicity and SES with IQ and achievement in spina bifida meningomyelocele. J Pediatr Psychol. 2010;35(9):927–36. doi: 10.1093/jpepsy/jsq001
29.
AuKS, TranPX, TsaiCC, et al. Characteristics of a spina bifida population including North American Caucasian and Hispanic individuals. Birth Defects Res A Clin Mol Teratol. 2008;82(10):692–700. doi: 10.1002/bdra.20499
30.
HollingsheadAA. Four-Factor Scale Index of Social Status. NewHaven (CT):Yale University Department of Sociology; 1975 (Unpublished).
31.
ParkinPC, KirpalaniHM, RosenbaumPL, et al. Development of a health-related quality of life instrument for use in children with spina bifida. Qual Life Res. 1997;6(2):123–32. doi: 10.1023/a:1026486016212
32.
BruininksRH, WoodcockRW, WeathermanRF, HillBK. Scales of Independent Behavior-Revised. Chicago (IL): Riverside Publishing Company; 1996.
33.
SchielzethH, NakagawaS. Nested by design: model fitting and interpretation in a mixed model era. Methods in Ecology and Evolution. 2013;4(1):14–24. doi: 10.1111/j.2041-210x.2012.00251.x
34.
HernandezB, CometaMJ, RosenJ, VelcoffJ, SchoberD, LunaRD. Employment, Vocational Rehabilitation, and the Ticket to Ride Program: Perspectives of Latinos with Disabilities. J Appl Rehabil Couns. 2006;37(3). doi: 10.1891/0047-2220.37.3.13
