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

Ano de publicación: 2020

Volume: 29

Número: 1

Páxinas: 39-48

Tipo: Artigo

DOI: 10.5093/PI2019A17 DIALNET GOOGLE SCHOLAR lock_openAcceso aberto editor

Outras publicacións en: Psychosocial Intervention

Resumo

Research has highlighted that no instrument with adequate evidence of validity and reliability currently exists to assess quality of life (QoL) in children with Down syndrome (DS). Important limitations have been pointed out when existingQoL instruments for children with intellectual disability are applied to this population. The main goal of this research is to adapt the KidsLife scale by selecting the most reliable and discriminant items for children and youth with DS. The sample was composed of 405 children with DS, aged between 4 and 21 years old, attending organizations that provide educational, social, and health services. The field-test version of the KidsLife scale was administered as an informantreport, completed by someone who knew the child well, and who had opportunities to observe him/her over long periods of time in different situations. Evidence of reliability and validity based on the internal structure of the scale is provided.According to the QoL model used to develop the scale, the solution showing the best fit to the data was the one with eight intercorrelated domains. Finally, the implications of the study, its limitations and suggestions for future researchare discussed.

Información de financiamento

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