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Gepubliceerd in: Journal of Autism and Developmental Disorders 4/2020

03-01-2020 | Original Paper

Quality of Life in School-Aged Youth Referred to an Autism Specialty Clinic: A Latent Profile Analysis

Auteurs: Gazi F. Azad, Emily Dillon, Julie Feuerstein, Luke Kalb, Jason Neely, Rebecca Landa

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 4/2020

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Abstract

We examined whether different profiles of quality of life (QoL) existed among youth referred to an autism spectrum disorder (ASD) specialty clinic and, if present, determined if these groups were associated with different characteristics. Data were from parental report of 5–17 year-old youth (N = 476) who were scheduled to receive an evaluation at an ASD clinic. Parents completed questionnaires, including the Pediatric Quality of Life Inventory, assessing child and family functioning; providers reported diagnostic impressions. A latent profile analysis found five distinct groups: Low Risk, School Problems, Only Social Emotional Problems, and two Physical/Social Emotional Problems. The groups differed on clinical characteristics and family functioning. These findings have implications for more efficient and effective evaluations in service delivery systems serving complex patients.
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Literatuur
go back to reference Achenbach, T. M., & Ruffle, T. M. (2000). The Child Behavior Checklist and related forms for assessing behavioral/emotional problems and competencies. Pediatrics in Review, 21(8), 265–271. CrossRefPubMed Achenbach, T. M., & Ruffle, T. M. (2000). The Child Behavior Checklist and related forms for assessing behavioral/emotional problems and competencies. Pediatrics in Review, 21(8), 265–271. CrossRefPubMed
go back to reference Bastiaansen, D., Koot, H. M., Ferdinand, R. F., & Verhulst, F. C. (2004). Quality of life in children with psychiatric disorders: self-, parent, and clinician report. Journal of the American Academy of Child and Adolescent Psychiatry, 43(2), 221–230. CrossRefPubMed Bastiaansen, D., Koot, H. M., Ferdinand, R. F., & Verhulst, F. C. (2004). Quality of life in children with psychiatric disorders: self-, parent, and clinician report. Journal of the American Academy of Child and Adolescent Psychiatry, 43(2), 221–230. CrossRefPubMed
go back to reference Biggs, E. E., & Carter, E. W. (2016). Quality of life for transition-age youth with autism or intellectual disability. Journal of Autism and Developmental Disorders, 46(1), 190–204. CrossRefPubMed Biggs, E. E., & Carter, E. W. (2016). Quality of life for transition-age youth with autism or intellectual disability. Journal of Autism and Developmental Disorders, 46(1), 190–204. CrossRefPubMed
go back to reference Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism, 15(1), 7–20. CrossRefPubMed Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism, 15(1), 7–20. CrossRefPubMed
go back to reference Bishop-Fitzpatrick, L., Hong, J., Smith, L. E., Makuch, R. A., Greenberg, J. S., & Mailick, M. R. (2016). Characterizing objective quality of life and normative outcomes in adults with autism spectrum disorder: An exploratory latent class analysis. Journal of Autism and Developmental Disorders, 46(8), 2707–2719. CrossRefPubMedPubMedCentral Bishop-Fitzpatrick, L., Hong, J., Smith, L. E., Makuch, R. A., Greenberg, J. S., & Mailick, M. R. (2016). Characterizing objective quality of life and normative outcomes in adults with autism spectrum disorder: An exploratory latent class analysis. Journal of Autism and Developmental Disorders, 46(8), 2707–2719. CrossRefPubMedPubMedCentral
go back to reference Brewer, A. (2018). “We were on our own”: Mothers’ experiences navigating the fragmented system of professional care for autism. Social Sicnece and Medicine, 215, 61–68. CrossRef Brewer, A. (2018). “We were on our own”: Mothers’ experiences navigating the fragmented system of professional care for autism. Social Sicnece and Medicine, 215, 61–68. CrossRef
go back to reference Burgess, A. F., & Gutstein, S. E. (2007). Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12(2), 80–86. CrossRefPubMed Burgess, A. F., & Gutstein, S. E. (2007). Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12(2), 80–86. CrossRefPubMed
go back to reference Chiang, H., & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Research in Autism Spectrum Disorders, 8(8), 974–986. CrossRef Chiang, H., & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Research in Autism Spectrum Disorders, 8(8), 974–986. CrossRef
go back to reference Davidson, J. E., Aslakson, R. A., Long, A. C., Puntillo, K. A., Kross, E. K., Hart, J., et al. (2017). Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine, 45(1), 103–128. CrossRefPubMed Davidson, J. E., Aslakson, R. A., Long, A. C., Puntillo, K. A., Kross, E. K., Hart, J., et al. (2017). Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Critical Care Medicine, 45(1), 103–128. CrossRefPubMed
go back to reference de Vries, M., & Geurts, H. (2015). Influence of autism traits and executive functioning on quality of life in children with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(9), 2734–2743. CrossRefPubMedPubMedCentral de Vries, M., & Geurts, H. (2015). Influence of autism traits and executive functioning on quality of life in children with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(9), 2734–2743. CrossRefPubMedPubMedCentral
go back to reference Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 739–747. CrossRefPubMed Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 739–747. CrossRefPubMed
go back to reference Eskow, K., Pineles, L., & Summers, J. A. (2011). Exploring the effect of autism waiver services on family outcomes. Journal of Policy and Practice in Intellectual Disabilities, 8(1), 28–35. CrossRef Eskow, K., Pineles, L., & Summers, J. A. (2011). Exploring the effect of autism waiver services on family outcomes. Journal of Policy and Practice in Intellectual Disabilities, 8(1), 28–35. CrossRef
go back to reference Gardiner, E., & Iarocci, G. (2012). Unhappy (and happy) in their own way: A developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism. Research in Developmental Disabilities, 33(6), 2177–2192. CrossRefPubMed Gardiner, E., & Iarocci, G. (2012). Unhappy (and happy) in their own way: A developmental psychopathology perspective on quality of life for families living with developmental disability with and without autism. Research in Developmental Disabilities, 33(6), 2177–2192. CrossRefPubMed
go back to reference Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism, 10(5), 439–451. CrossRefPubMed Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism, 10(5), 439–451. CrossRefPubMed
go back to reference Goldrich Eskow, K., Ann Summers, J., Chasson, G. S., & Mitchell, R. (2018). The association between family–teacher partnership satisfaction and outcomes of academic progress and quality of life for children/youth with autism. Journal of Policy and Practice in Intellectual Disabilities, 15(1), 16–25. CrossRef Goldrich Eskow, K., Ann Summers, J., Chasson, G. S., & Mitchell, R. (2018). The association between family–teacher partnership satisfaction and outcomes of academic progress and quality of life for children/youth with autism. Journal of Policy and Practice in Intellectual Disabilities, 15(1), 16–25. CrossRef
go back to reference Halfon, N., Larson, K., & Slusser, W. (2013). Associations between obesity and comorbid mental health, developmental, and physical health conditions in a nationally representative sample of US children aged 10 to 17. Academic pediatrics, 13(1), 6–13. CrossRefPubMed Halfon, N., Larson, K., & Slusser, W. (2013). Associations between obesity and comorbid mental health, developmental, and physical health conditions in a nationally representative sample of US children aged 10 to 17. Academic pediatrics, 13(1), 6–13. CrossRefPubMed
go back to reference Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 42(3), 639–642. Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 42(3), 639–642.
go back to reference Hysing, M., Elgen, I., Gillberg, C., Lie, S. A., & Lundervold, A. J. (2007). Chronic physical illness and mental health in children. Results from a large-scale population study. Journal of Child Psychology and Psychiatry, 48(8), 785–792. CrossRefPubMed Hysing, M., Elgen, I., Gillberg, C., Lie, S. A., & Lundervold, A. J. (2007). Chronic physical illness and mental health in children. Results from a large-scale population study. Journal of Child Psychology and Psychiatry, 48(8), 785–792. CrossRefPubMed
go back to reference Ikeda, E., Hinckson, E., & Krägeloh, C. (2014). Assessment of quality of life in children and youth with autism spectrum disorder: A critical review. Quality of Life Research, 23(4), 1069–1085. CrossRefPubMed Ikeda, E., Hinckson, E., & Krägeloh, C. (2014). Assessment of quality of life in children and youth with autism spectrum disorder: A critical review. Quality of Life Research, 23(4), 1069–1085. CrossRefPubMed
go back to reference Jung, T., & Wickrama, K. A. S. (2008). An introduction to latent class growth analysis and growth mixture modeling. Social and Personality Psychology Compass, 2(1), 302–317. CrossRef Jung, T., & Wickrama, K. A. S. (2008). An introduction to latent class growth analysis and growth mixture modeling. Social and Personality Psychology Compass, 2(1), 302–317. CrossRef
go back to reference Kamio, Y., Inada, N., & Koyama, T. (2013). A nationwide survey on quality of life and associated factors of adults with high-functioning autism spectrum disorders. Autism, 17(1), 15–26. CrossRefPubMed Kamio, Y., Inada, N., & Koyama, T. (2013). A nationwide survey on quality of life and associated factors of adults with high-functioning autism spectrum disorders. Autism, 17(1), 15–26. CrossRefPubMed
go back to reference Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390–397. CrossRef Keenan, M., Dillenburger, K., Doherty, A., Byrne, T., & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390–397. CrossRef
go back to reference Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305. CrossRefPubMed Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305. CrossRefPubMed
go back to reference Lanza, S. T., Patrick, M. E., & Maggs, J. L. (2010). Latent transition analysis: Benefits of a latent variable approach to modeling transitions in substance use. Journal of Drug Issues, 40(1), 93–120. CrossRefPubMedPubMedCentral Lanza, S. T., Patrick, M. E., & Maggs, J. L. (2010). Latent transition analysis: Benefits of a latent variable approach to modeling transitions in substance use. Journal of Drug Issues, 40(1), 93–120. CrossRefPubMedPubMedCentral
go back to reference Lee, L. C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. CrossRefPubMed Lee, L. C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. CrossRefPubMed
go back to reference Limbers, C. A., Heffer, R. W., & Varni, J. W. (2009). Health-related quality of life and cognitive functioning from the perspective of parents of school-aged children with Asperger’s syndrome utilizing the PedsQL™. Journal of Autism and Developmental Disorders, 39(11), 1529. CrossRefPubMed Limbers, C. A., Heffer, R. W., & Varni, J. W. (2009). Health-related quality of life and cognitive functioning from the perspective of parents of school-aged children with Asperger’s syndrome utilizing the PedsQL™. Journal of Autism and Developmental Disorders, 39(11), 1529. CrossRefPubMed
go back to reference Markowitz, L. A., Reyes, C., Embacher, R. A., Speer, L. L., Roizen, N., & Frazier, T. W. (2016). Development and psychometric evaluation of a psychosocial quality-of-life questionnaire for individuals with autism and related developmental disorders. Autism, 20(7), 832–844. CrossRefPubMed Markowitz, L. A., Reyes, C., Embacher, R. A., Speer, L. L., Roizen, N., & Frazier, T. W. (2016). Development and psychometric evaluation of a psychosocial quality-of-life questionnaire for individuals with autism and related developmental disorders. Autism, 20(7), 832–844. CrossRefPubMed
go back to reference Mastro, K. A., Flynn, L., & Preuster, C. (2014). Patient-and family-centered care: A call to action for new knowledge and innovation. JONA: The Journal of Nursing Administration, 44(9), 446–451. CrossRef Mastro, K. A., Flynn, L., & Preuster, C. (2014). Patient-and family-centered care: A call to action for new knowledge and innovation. JONA: The Journal of Nursing Administration, 44(9), 446–451. CrossRef
go back to reference Mazurek, M. O. (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism, 18(3), 223–232. CrossRefPubMed Mazurek, M. O. (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism, 18(3), 223–232. CrossRefPubMed
go back to reference Muthén, L. K., & Muthén, B. O. (2012). MPlus: Statistical analysis with latent variables-User’s guide. Muthén, L. K., & Muthén, B. O. (2012). MPlus: Statistical analysis with latent variables-User’s guide.
go back to reference Oberski, D. (2016). Mixture models: Latent profile and latent class analysis. In J. Robertson & M. Kaptein (Eds.), Modern statistical methods for HCI. Human-computer interaction series. Cham: Springer. Oberski, D. (2016). Mixture models: Latent profile and latent class analysis. In J. Robertson & M. Kaptein (Eds.), Modern statistical methods for HCI. Human-computer interaction series. Cham: Springer.
go back to reference Riley, A. W., Forrest, C. B., Starfield, B., Rebok, G. W., Robertson, J. A., & Green, B. F. (2004). The parent report form of the CHIP-Child Edition: Reliability and validity. Medical Care, 42, 210–220. CrossRefPubMed Riley, A. W., Forrest, C. B., Starfield, B., Rebok, G. W., Robertson, J. A., & Green, B. F. (2004). The parent report form of the CHIP-Child Edition: Reliability and validity. Medical Care, 42, 210–220. CrossRefPubMed
go back to reference Roongpraiwan, R., Efron, D., Sewell, J., & Mathai, J. (2007). Comparison of mental health symptoms between children attending developmental/behavioural paediatric clinics and child and adolescent mental health service. Journal of Paediatrics and Child Health, 43(3), 122–126. CrossRefPubMed Roongpraiwan, R., Efron, D., Sewell, J., & Mathai, J. (2007). Comparison of mental health symptoms between children attending developmental/behavioural paediatric clinics and child and adolescent mental health service. Journal of Paediatrics and Child Health, 43(3), 122–126. CrossRefPubMed
go back to reference Ryan, R. M., & Claessens, A. (2013). Associations between family structure changes and children’s behavior problems: The moderating effects of timing and marital birth. Developmental Psychology, 49(7), 1219. CrossRefPubMed Ryan, R. M., & Claessens, A. (2013). Associations between family structure changes and children’s behavior problems: The moderating effects of timing and marital birth. Developmental Psychology, 49(7), 1219. CrossRefPubMed
go back to reference Rydzewska, E., Hughes-McCormack, L. A., Gillberg, C., Henderson, A., MacIntyre, C., Rintoul, J., et al. (2019). Prevalence of sensory impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism: Observational study of a whole country population. Autism, 23(5), 1201–1209. CrossRefPubMed Rydzewska, E., Hughes-McCormack, L. A., Gillberg, C., Henderson, A., MacIntyre, C., Rintoul, J., et al. (2019). Prevalence of sensory impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism: Observational study of a whole country population. Autism, 23(5), 1201–1209. CrossRefPubMed
go back to reference Sansosti, F. J., Lavik, K. B., & Sansosti, J. M. (2012). Family experiences through the autism diagnostic process. Focus on Autism and Other Developmental Disabilities, 27(2), 81–92. CrossRef Sansosti, F. J., Lavik, K. B., & Sansosti, J. M. (2012). Family experiences through the autism diagnostic process. Focus on Autism and Other Developmental Disabilities, 27(2), 81–92. CrossRef
go back to reference Silva, L. M., & Schalock, M. (2012). Autism parenting stress index: Initial psychometric evidence. Journal of Autism and Developmental Disorders, 42(4), 566–574. CrossRefPubMed Silva, L. M., & Schalock, M. (2012). Autism parenting stress index: Initial psychometric evidence. Journal of Autism and Developmental Disorders, 42(4), 566–574. CrossRefPubMed
go back to reference van Heijst, B. F., & Geurts, H. M. (2015). Quality of life in autism across the lifespan: A meta-analysis. Autism, 19(2), 158–167. CrossRefPubMed van Heijst, B. F., & Geurts, H. M. (2015). Quality of life in autism across the lifespan: A meta-analysis. Autism, 19(2), 158–167. CrossRefPubMed
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, 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, 3(6), 329–341. CrossRefPubMed
go back to reference Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Parent proxy-report of their children’s health-related quality of life: An analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL™ 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5(1), 2. CrossRefPubMedPubMedCentral Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Parent proxy-report of their children’s health-related quality of life: An analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL™ 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5(1), 2. CrossRefPubMedPubMedCentral
go back to reference Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL™: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139. CrossRefPubMed Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL™: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139. CrossRefPubMed
go back to reference Wakimizu, R., Yamaguchi, K., & Fujioka, H. (2017). Family empowerment and quality of life of parents raising children with developmental disabilities in 78 Japanese families. International Journal of Nursing Sciences, 4(1), 38–45. CrossRefPubMed Wakimizu, R., Yamaguchi, K., & Fujioka, H. (2017). Family empowerment and quality of life of parents raising children with developmental disabilities in 78 Japanese families. International Journal of Nursing Sciences, 4(1), 38–45. CrossRefPubMed
go back to reference Wallander, J. L., & Koot, H. M. (2016). Quality of life in children: A critical examination of concepts, approaches, issues, and future directions. Clinical Psychology Review, 45, 131–143. CrossRefPubMed Wallander, J. L., & Koot, H. M. (2016). Quality of life in children: A critical examination of concepts, approaches, issues, and future directions. Clinical Psychology Review, 45, 131–143. CrossRefPubMed
go back to reference Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. CrossRefPubMed Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. CrossRefPubMed
go back to reference Zuna, N. I., Turnbull, A., & Summers, J. A. (2009). Family quality of life: Moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6(1), 25–31. CrossRef Zuna, N. I., Turnbull, A., & Summers, J. A. (2009). Family quality of life: Moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6(1), 25–31. CrossRef
Metagegevens
Titel
Quality of Life in School-Aged Youth Referred to an Autism Specialty Clinic: A Latent Profile Analysis
Auteurs
Gazi F. Azad
Emily Dillon
Julie Feuerstein
Luke Kalb
Jason Neely
Rebecca Landa
Publicatiedatum
03-01-2020
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 4/2020
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-019-04353-x

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