Adapting a measure of quality of life to children with Down Syndrome for the development of evidence-based interventions

  1. Laura E. Gómez 1
  2. Miguel A. Verdugo
  3. Mar Rodríguez
  4. Lucía Morán 1
  5. Víctor B. Arias 1
  6. Asunción Monsalve 1
  1. 1 Universidad de Oviedo
    info

    Universidad de Oviedo

    Oviedo, España

    ROR https://ror.org/006gksa02

Revista:
Psychosocial Intervention

ISSN: 1132-0559

Año de publicación: 2020

Volumen: 29

Número: 1

Páginas: 39-48

Tipo: Artículo

DOI: 10.5093/PI2019A17 DIALNET GOOGLE SCHOLAR lock_openAcceso abierto editor

Otras publicaciones en: Psychosocial Intervention

Objetivos de desarrollo sostenible

Resumen

La investigación ha puesto de manifiesto que actualmente no existen instrumentos que presenten una adecuada evidencia de validez y fiabilidad para evaluar la calidad de vida (CV) de los niños con síndrome de Down (SD). De hecho, se encuentran importantes limitaciones cuando se aplican a esta población instrumentos de CV diseñados para personas con discapacidad intelectual. El principal objetivo de este trabajo es adaptar la escala KidsLife seleccionando los ítems más fiables y con mayor poder discriminativo para los jóvenes con SD. La muestra estaba formada por 405 jóvenes con SD, con edades comprendidas entre los 4 y los 21 años que asistían a organizaciones proveedoras de servicios educativos, sociales y de salud. La versión piloto de la escala KidsLife la contestó un informante que conocía al joven o a la joven bien, teniendo la oportunidad de observarle durante periodos prolongados de tiempo en diferentes situaciones. Se proporcionan pruebas de la fiabilidad y validez basadas en la estructura interna de la escala. De acuerdo con el modelo de CV utilizado para el desarrollo de la escala, la solución que mostró mejor ajuste a los datos fue la de ocho dimensiones correlacionadas. Finalmente, se discuten las implicaciones del estudio, sus limitaciones y se hacen sugerencias para la investigación futura.

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Información de financiación

This study has been funded by the Ministry of Economic and Competitiveness of Spain (PSI2012-33139).

Financiadores

Referencias bibliográficas

  • Acharya, K.. (2011). Prenatal Testing for intellectual disability: Misperceptions and reality with lessons from Down syndrome. Developmental Disability Research Reviews. 17. 27-31
  • Arias, V. B.,Gómez, L. E.,Morán, M. L.,Alcedo, M. A.,Monsalve, A.,Fontanil, Y.. (2018). Does quality of life differ for children with autism spectrum disorder and intellectual disability compared to peers without autism?. Journal of Autism and Developmental Disorders. 48. 123
  • Betancor, V.,Arino, E.,Rodríguez, A.,Delgado, N.. (2016). Do they feel the same as us? The infrahumanization of individuals with Down syndrome. Psicothema. 28. 311
  • Bittles, A. H.,Bower, C.,Hussain, R.,Glasson, E. J.. (2007). The four ages of Down syndrome. European Journal of Public Health. 17. 221
  • Brown, R.. (1998). he effects of quality life models on the development of research and practice in the field of Down syndrome. Down Syndrome Research and Practice. 5. 39-42
  • Brown, R. I.. (2014). Educating learners with Down syndrome: Research, theory, and practice with children and adolescents. Routledge/Taylor & Francis Group. New York, NY.
  • Browne, M. W.,Cudeck, R.. (1992). Alternative ways of assessing model fit. Sociological Methods and Research. 21. 230
  • Bowling, A.,Gabriel, Z.. (2004). An integrational model of quality of life in older age. Results from the ESRC/MRC HSRC quality of life survey in Britain. Social Indicators Research. 69. 1-36
  • Downs, J.,Jacoby, P.,Leonard, H.,Epstein, A.,Murphy, N.,Davis, E.,Williams, K.. (2019). Psychometric properties of the Quality of Life Inventory-Disability (QI-Disability) measure. Quality of Life Research. 28. 783
  • Esbensen, A. J.,Seltzer, M. M.. (2011). Accounting for the “Down syndrome advantage.”. American Journal on Intellectual and Developmental Disabilities. 116. 3-15
  • Fidler, D. J.. (2005). The emerging Down Syndrome behavioral phenotype in early childhood. Infants & Young Children. 18. 86-103
  • Foley, K. R.,Jacoby, P.,Girdler, S.,Bourke, J.,Pikora, T.,Lennox, N.,Leonard, H.. (2013). Functioning and post-school transition outcomes for young people with Down syndrome. Child: Care, Health and Development. 39. 789-800
  • Gómez, L. E.,Alcedo, M. Á.,Arias, B.,Fontanil, Y.,Arias, V. B.,Monsalve, A.,Verdugo, M. Á.. (2016). A new scale for the measurement of quality of life in children with intellectual disability. Research in Developmental Disabilities. 5354. 399-410
  • Gómez, L. E.,Morán, M. L.,Alcedo, M. A.,Arias, V. B.,Verdugo, M. A.. Addressing quality of life of children with autism spectrum disorder and intellectual disability. Intellectual and Developmental Disabilities.
  • Gómez, L. E.,Peña, E.,Alcedo, M. A.,Monsalve, A.,Fontanil, Y.,Arias, B.,Verdugo, M. A.. (2014). El constructo de calidad de vida en niños y adolescentes con discapacidades múltiples y profundas: propuesta para su evaluación [The construct of quality of life concept in children and adolescents with profound and multiple disabilities: A proposal for its assessment]. Siglo Cero. 45. 56-69
  • Gómez, L. E.,Peña, E.,Arias, B.,Verdugo, M. A.. (2016). Impact of individual and organizational variables on quality of life. Social Indicators Research. 125. 649
  • Gómez, L. E.,Verdugo, M. A.. (2016). Outcomes evaluation. Cross-cultural quality of life: Enhancing the lives of persons with intellectual disability. 71-80
  • Gómez, L. E.,Verdugo, M. A.,Arias, B.. (2010). Calidad de vida individual: avances en su conceptualización y retos emergentes en el ámbito de la discapacidad. [Individual quality of life advances in the conceptualization and emerging challenges in the disability field]. Behavioral Psychology-Psicología Conductual. 18. 453
  • Gómez, L. E.,Verdugo, M. A.,Arias, B.,Navas, P.,Schalock, R. L.. (2013). The development and use of provider profiles at the organization and systems level. Evaluation & Program Planning. 40. 17-26
  • Goodman, M. J.,Brixner, D. I.. (2013). New therapies for treating Down syndrome require quality of life measurement. American Journal of Medical Genetics. 161. 639
  • Graves, J.,Graff, J. C.,Esbensen, A. J.,Hathaway, D. K.,Wan, J. Y.,Newsome, M.. (2016). Measuring health-related quality of life of adults with Down syndrome. American Journal on Intellectual and Developmental Disabilities. 121. 312
  • Haddad, F.,Bourke, J.,Wong, K.,Leonard, H.. (2018). An investigation of the determinants of quality of life in adolescents and young adults with Down syndrome. PLoS ONE. 13. 0197394
  • Hair, J. F.,Ringle, C. M.,Sarstedt, M.. (2011). PLS-SEM: Indeed a silver bullet. Journal of Marketing Theory and Practice. 19. 139
  • Hodapp, R. M.,Ly, T. M.,Fidler, D. J.,Ricci, L. A.. (2001). Less stress, more rewarding: Parenting children with Down syndrome. Parenting: Science and practice. 1. 317
  • Jung, H. K.,Chung, E.,Lee, B. H.. (2017). A comparison of the function, activity and participation and quality of life between down syndrome children and typically developing children. Journal of Physical Therapy Science. 29. 1377
  • Leonard, S.,Msall, M.,Bower, C.,Tremont, M.,Leonard, H.. (2002). Functional status of school-aged children with Down syndrome. Journal of Paediatrics and Child Health. 38. 160
  • Mantry, D.,Cooper, S.A.,Smiley, E.,Morrison, J.,Allan, L.,Williamson, A.,Jackson, A.. (2008). The prevalence and incidence of mental ill-health in adults with Down syndrome. Journal of Intellectual Disability Research. 52. 141
  • Marchal, J. P.,Maurice-Stam, H.,van Trotsenburg, A. S. P.,Grootenhuis, M. A.. (2016). Mothers and fathers of young Dutch adolescents with Down syndrome: Health related quality of life and family functioning. Research in Developmental Disabilities. 59. 359
  • Marsh, H. W.,Hau, K. T.. (1996). Assessing goodness of fit: Is parsimony always desirable?. Journal of Experimental Education. 64. 364
  • Muñiz, J.,Fonseca, E.. (2019). Diez pasos para la construcción de un test. [Ten steps for test development]. Psicothema. 31. 7-16
  • Murphy, N.,Epstein, A.,Leonard, H.,Davis, E.,Reddihough, D.,Whitehouse, A.,Downs, J.. Qualitative analysis of parental observations on quality of life in Australian children with Down syndrome. Journal of Developmental and Behavioral Pediatrics. 38. 161
  • Newton, R.. (2018). Quality of life in Down syndrome: A matter of perspective. Developmental Medicine and Child Neurology. 60. 337
  • Oates, A.,Bebbington, A.,Bourke, J.,Girdler, S.,Leonard, H.. (2011). Leisure participation for school-aged children with Down syndrome. Disability and Rehabilitation. 33. 1880
  • Orsmond, G. I.,Seltzer, M. M.. (2007). Siblings of individuals with autism or Down syndrome: Effects on adult lives. Journal of Intellectual Disability Research. 51. 682
  • Rodríguez, M.. (2018). Evaluación de la calidad de vida en niños y jóvenes con síndrome de Down [Assessment of quality of life in children and youth with Down syndrome].
  • Rofail, D.,Froggatt, D.,de la Torre, R.,Edgin, J.,Kishnani, P.,Touraine, R.,D’Ardhuy, X. L.. (2017). Health-related quality of life in individuals with Down syndrome: Results from a non-interventional longitudinal multi-national study. Advances in Therapy. 34. 2058
  • Saris, W. E.,Satorra, A.,Van der Veld, W. M.. (2009). Testing structural equation models or detection of misspecifications?. Structural Equation Modeling. 16. 561
  • Schalock, R. L.,Gómez, L. E.,Verdugo, M. A.,Claes, C.. (2017). Evidence and evidence-based practices: Are we there yet?. Intellectual and Developmental Disabilities. 55. 112
  • Schalock, R. L.,Verdugo, M. A.. (2002). Quality of life for human service practitioners. American Association on Mental Retardation. Washington, DC.
  • Schalock, R. L.,Verdugo, M. A.,Gómez, L. E.,Reinders, H.. (2016). Moving us towards a theory of individual quality of life. American Journal of Intellectual and Developmental Disabilities. 121. 1-12
  • Shields, N.,Leonard, H.,Munteanu, S.,Bourke, J.,Lim, P.,Taylor, N. F.,Downs, J.. (2018). Parent-reported health-related quality of life of children with Down syndrome: A descriptive study. Developmental Medicine and Child Neurology. 60. 402
  • Silverman, W.. (2007). Down syndrome: Cognitive phenotype. Mental Retardation and Developmental Disabilities Research Reviews. 13. 228
  • Vadakedom, S. S.,Antony, J. M.,Padma, B. K.,Mammen, D. S.,Thankappan, B. P.. (2017). Quality of life of mothers of children with Down syndrome. Journal of Evolution of Medical and Dental Sciences. 6. 2939
  • Van Hecke, N.,Claes, C.,Vanderplasschen, W.,De Maeyer, J.,De Witte, N.,Vandevelde, S.. (2018). Conceptualisation and measurement of quality of life based on Schalock and Verdugo’s model: A cross-disciplinary review of the literature. Social Indicators Research. 137. 335
  • Xanthopoulos, M. S.,Walega, R.,Xiao, R.,Prasad, D.,Pipan, M. M.,Zemel, B. S.,Kelly, A.. (2017). Caregiver-reported quality of life in youth with Down syndrome. Journal of Pediatrics. 189. 98-104
  • Xu, J.,Wang, M.,Xiang, Y.,Hu, X.. (2005). Quality of life for people with intellectual disabilities in China: A cross-culture perspectives study. Journal of Intellectual Disabilities Research. 49. 745
Fuente de los datos: Dialnet