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Gepubliceerd in: Journal of Autism and Developmental Disorders 3/2023

03-08-2022 | Original Paper

Caregiver-Child Agreement in Health-Related Quality of Life of Autistic Children and Adolescents

Auteurs: Mauricio A. Lopez-Espejo, Alicia C. Nuñez, Melanie Ruz, Valentina Saez, Odalie C. Moscoso, Raul G. Escobar

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 3/2023

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Abstract

This study examined the agreement of perceived health-related quality of life (HRQOL) between caregivers and autistic children and adolescents (n = 133, 5–12 years) using the Pediatric Quality of Life Inventory Generic Core Scales, Fourth Edition (PedsQL 4.0). Results reveal good to excellent agreement over this age range across the total, physical, and psychosocial health scales. However, the emotional, social, and school functioning scores demonstrated lower agreement in dyads with children aged 5–7 than in dyads with children aged 8–12 years. Despite these differences in agreement, overall, the PedsQL 4.0 caregiver-module is a reliable instrument for measuring HRQOL in autistic individuals aged 5–12 years.
Literatuur
go back to reference Cicchetti, D. V., & Sparrow, S. A. (1981). Developing criteria for establishing interrater reliability of specific items: Applications to assessment of adaptive behavior. American Journal of Mental Deficiency, 86(2), 127–137.PubMed Cicchetti, D. V., & Sparrow, S. A. (1981). Developing criteria for establishing interrater reliability of specific items: Applications to assessment of adaptive behavior. American Journal of Mental Deficiency, 86(2), 127–137.PubMed
go back to reference Cliff, N. (1993). Dominance statistics: Ordinal analyses to answer ordinal questions. Psychological Bulletin, 114(3), 494.CrossRef Cliff, N. (1993). Dominance statistics: Ordinal analyses to answer ordinal questions. Psychological Bulletin, 114(3), 494.CrossRef
go back to reference Egilson, S. T., Ólafsdóttir, L. B., Leósdóttir, T., & Saemundsen, E. (2017). Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports. Autism: THe International Journal of Research and Practice, 21(2), 133–141. https://doi.org/10.1177/1362361316630881CrossRefPubMed Egilson, S. T., Ólafsdóttir, L. B., Leósdóttir, T., & Saemundsen, E. (2017). Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports. Autism: THe International Journal of Research and Practice, 21(2), 133–141. https://​doi.​org/​10.​1177/​1362361316630881​CrossRefPubMed
go back to reference Fisher, R. S., Acevedo, C., Arzimanoglou, A., Bogacz, A., Cross, J. H., Elger, C. E., Engel, J., Jr., Forsgren, L., French, J. A., Glynn, M., Hesdorffer, D. C., Lee, B. I., Mathern, G. W., Moshé, S. L., Perucca, E., Scheffer, I. E., Tomson, T., Watanabe, M., & Wiebe, S. (2014). ILAE official report: A practical clinical definition of epilepsy. Epilepsia, 55(4), 475–482. https://doi.org/10.1111/epi.12550CrossRefPubMed Fisher, R. S., Acevedo, C., Arzimanoglou, A., Bogacz, A., Cross, J. H., Elger, C. E., Engel, J., Jr., Forsgren, L., French, J. A., Glynn, M., Hesdorffer, D. C., Lee, B. I., Mathern, G. W., Moshé, S. L., Perucca, E., Scheffer, I. E., Tomson, T., Watanabe, M., & Wiebe, S. (2014). ILAE official report: A practical clinical definition of epilepsy. Epilepsia, 55(4), 475–482. https://​doi.​org/​10.​1111/​epi.​12550CrossRefPubMed
go back to reference Howes, O. D., Rogdaki, M., Findon, J. L., Wichers, R. H., Charman, T., King, B. H., Loth, E., McAlonan, G. M., McCracken, J. T., Parr, J. R., Povey, C., Santosh, P., Wallace, S., Simonoff, E., & Murphy, D. G. (2018). Autism spectrum disorder: Consensus guidelines on assessment, treatment and research from the British Association for Psychopharmacology. Journal of Psychopharmacology (oxford, England), 32(1), 3–29. https://doi.org/10.1177/0269881117741766CrossRefPubMed Howes, O. D., Rogdaki, M., Findon, J. L., Wichers, R. H., Charman, T., King, B. H., Loth, E., McAlonan, G. M., McCracken, J. T., Parr, J. R., Povey, C., Santosh, P., Wallace, S., Simonoff, E., & Murphy, D. G. (2018). Autism spectrum disorder: Consensus guidelines on assessment, treatment and research from the British Association for Psychopharmacology. Journal of Psychopharmacology (oxford, England), 32(1), 3–29. https://​doi.​org/​10.​1177/​0269881117741766​CrossRefPubMed
go back to reference INE. (2017). Resultados Censo 2017. Instituto Nacional de Estadística. INE. (2017). Resultados Censo 2017. Instituto Nacional de Estadística.
go back to reference Kindig, D. A., Booske, B. C., & Remington, P. L. (2010). Mobilizing Action Toward Community Health (MATCH): Metrics, incentives, and partnerships for population health. Preventing Chronic Disease, 7(4), A68.PubMedPubMedCentral Kindig, D. A., Booske, B. C., & Remington, P. L. (2010). Mobilizing Action Toward Community Health (MATCH): Metrics, incentives, and partnerships for population health. Preventing Chronic Disease, 7(4), A68.PubMedPubMedCentral
go back to reference Lopez-Espejo, M. A., Nuñez, A. C., Moscoso, O. C., & Escobar, R. G. (2021a). Brief report: Health-related quality of life in preschoolers with autism spectrum disorder is related to diagnostic age and autistic symptom severity. Journal of Autism and Developmental Disorders, 51(12), 4704–4710. https://doi.org/10.1007/s10803-021-04909-wCrossRefPubMed Lopez-Espejo, M. A., Nuñez, A. C., Moscoso, O. C., & Escobar, R. G. (2021a). Brief report: Health-related quality of life in preschoolers with autism spectrum disorder is related to diagnostic age and autistic symptom severity. Journal of Autism and Developmental Disorders, 51(12), 4704–4710. https://​doi.​org/​10.​1007/​s10803-021-04909-wCrossRefPubMed
go back to reference Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishops, S. (2012). Autism diagnosis observation schedule Torrance. CA: Western Psychological Services. Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishops, S. (2012). Autism diagnosis observation schedule Torrance. CA: Western Psychological Services.
go back to reference Nuñez, A., Le Roy, C., Coelho-Medeiros, M. E., & López-Espejo, M. (2021). Factors affecting the behavior of children with ASD during the first outbreak of the COVID-19 pandemic. Neurological Sciences: Official Journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology, 42(5), 1675–1678. https://doi.org/10.1007/s10072-021-05147-9CrossRefPubMed Nuñez, A., Le Roy, C., Coelho-Medeiros, M. E., & López-Espejo, M. (2021). Factors affecting the behavior of children with ASD during the first outbreak of the COVID-19 pandemic. Neurological Sciences: Official Journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology, 42(5), 1675–1678. https://​doi.​org/​10.​1007/​s10072-021-05147-9CrossRefPubMed
go back to reference Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., Auquier, P., Power, M., Abel, T., Czemy, L., Mazur, J., Czimbalmos, A., Tountas, Y., Hagquist, C., Kilroe, J., & Kidscreen Group, E. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research, 5(3), 353–364. https://doi.org/10.1586/14737167.5.3.353CrossRef Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., Auquier, P., Power, M., Abel, T., Czemy, L., Mazur, J., Czimbalmos, A., Tountas, Y., Hagquist, C., Kilroe, J., & Kidscreen Group, E. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research, 5(3), 353–364. https://​doi.​org/​10.​1586/​14737167.​5.​3.​353CrossRef
go back to reference Sheldrick, R. C., Neger, E. N., Shipman, D., & Perrin, E. C. (2012). Quality of life of adolescents with autism spectrum disorders: Concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports. Quality of Life Research : An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 21(1), 53–57. https://doi.org/10.1007/s11136-011-9916-5CrossRefPubMed Sheldrick, R. C., Neger, E. N., Shipman, D., & Perrin, E. C. (2012). Quality of life of adolescents with autism spectrum disorders: Concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports. Quality of Life Research : An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 21(1), 53–57. https://​doi.​org/​10.​1007/​s11136-011-9916-5CrossRefPubMed
go back to reference Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambulatory Pediatrics: the Official Journal of the Ambulatory Pediatric Association, 3(6), 329–341.CrossRefPubMed Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambulatory Pediatrics: the Official Journal of the Ambulatory Pediatric Association, 3(6), 329–341.CrossRefPubMed
go back to reference Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.CrossRefPubMed Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.CrossRefPubMed
go back to reference WHOQOL. (1996). What quality of life? The WHOQOL Group. World Health Forum, 17, 354. WHOQOL. (1996). What quality of life? The WHOQOL Group. World Health Forum, 17, 354.
Metagegevens
Titel
Caregiver-Child Agreement in Health-Related Quality of Life of Autistic Children and Adolescents
Auteurs
Mauricio A. Lopez-Espejo
Alicia C. Nuñez
Melanie Ruz
Valentina Saez
Odalie C. Moscoso
Raul G. Escobar
Publicatiedatum
03-08-2022
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 3/2023
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-022-05689-7

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