Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders

Kalb, Luther G.; Jacobson, Lisa A.; Zisman, Corina R.; Mahone, E. Mark; Landa, Rebecca; Azad, Gazi; Menon, Deepa; Singh, Vini; Zabel, T. Andrew; Pritchard, Alison E.

doi:10.1007/s10803-019-04088-9

Cited by 16 publications

(13 citation statements)

References 34 publications

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“…This uniquely positions them to provide referrals as soon as screening or clinical observation warrants further evaluation. While pediatricians can provide a referral, it does not ensure the child will be scheduled for an evaluation or the family will attend if one is scheduled (Azad et al, 2019; Kalb et al, 2012; King et al, 2010). Additional supports may be needed to assist with coordination and follow-up of appointments.…”

Section: Discussionmentioning

confidence: 99%

“…For predisposing factors, later age at diagnosis is associated with non-White race and Hispanic ethnicity (Fountain et al, 2011; Levy et al, 2010), lower parental education and socioeconomic status (Emerson et al, 2016; Fountain et al, 2011), younger maternal and paternal age (Hrdlicka et al, 2016; Montiel-Nava et al, 2017), being a first-born child (Bickel et al, 2015), and rural geographic region (Coo et al, 2012; Fernell & Gillberg, 2010). For enabling factors, greater delays in diagnosis include no prior connection to the healthcare system (Kalkbrenner et al, 2011; Mandell et al, 2005) and greater distance to care (Antezana et al, 2017; Kalb et al, 2012). For need factors, higher IQ (Shattuck et al, 2009), lower ASD symptom severity (Daniels & Mandell, 2014), and the presence of co-occurring health or psychiatric conditions (Jo et al, 2015; Levy et al, 2010) have all been linked to later age at diagnosis.…”

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confidence: 99%

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Parental relationship status and age at autism spectrum disorder diagnosis of their child

Kalb

Holingue

Pfeiffer

et al. 2021

Autism

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A reliable autism spectrum disorder (ASD) diagnosis can occur as early as 18 months; however, the average age at diagnosis in the United States is over 2 years later. While there are numerous well-known barriers to seeking an ASD diagnosis, no research has examined if separation between a child’s biological parents affects timing of ASD diagnosis for their child. Data for this study were obtained from 561 children ( M age = 5.4 years, SD = 3.9 years) referred to an urban, outpatient ASD specialty clinic for their first ASD evaluation. Biological parents self-reported their relationship status during the evaluation, which was then categorized as either “together” (married or living together but not married) or “not together” (separated, divorced, or never married). An inverse-probability of exposure weighted linear regression model, which adjusted for 16 different child, family, and sociodemographic variables, was utilized to assess differences in child age of ASD diagnosis between groups. At the time of diagnosis, most children’s biological parents were together (69%) versus not together (31%). In the fully adjusted model, children of parents who were together were diagnosed 1.4 years earlier than those who were not together ( p < 0.001). Strategies for supporting these families and reducing age disparities are indicated. Lay abstract Autism spectrum disorder (ASD) can be diagnosed as early as 18 months of age. However, the average age at diagnosis in the United States is over 2 years later. A lot has been written about the many barriers families face when seeking a diagnosis for their child. One area of research that has received no attention is whether separation between a child’s biological parents affects the age at which a child is diagnosed with ASD. This study was conducted among 561 children who were receiving an ASD diagnosis for the first time. On average, these children were 5 years of age. The study took place in an urban, outpatient specialty autism clinic in the United States. Biological parents self-reported their relationship status during the evaluation. This was categorized as either “together” (married or living together but not married) or “not together” (separated, divorced, or never married). At the time of diagnosis, most children’s biological parents were together (69%). We found children of parents who were together were diagnosed 1.4 years earlier than those who were not together. These findings have important implications for providing support to families that separate early in a child’s life, with the goal of reducing the age at ASD evaluation among single parents and those who have been separated from their child’s other biological parent. Providing support to these families is important since earlier age at diagnosis leads to earlier intervention, which can improve long-term outcomes for the child, family, and community as a whole.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

Parental relationship status and age at autism spectrum disorder diagnosis of their child

Kalb

Holingue

Pfeiffer

et al. 2021

Autism

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“…To be included in this study, parents consented to join a Kennedy Krieger Institute clinic research registry approved by the Johns Hopkins Medicine Institutional Review Board, which allows their medical records to be used prospectively for research purposes. The registry's consent rate for this sample was 93%; greater details on the registry were reported by Kalb et al (2019).…”

Section: Methodsmentioning

confidence: 99%

Attention Deficit Hyperactivity Disorder Symptoms in Young Children with Autism Spectrum Disorder

2020

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The purpose of the current study was to examine the prevalence of attention deficit hyperactivity disorder (ADHD) symptoms among young children with autism spectrum disorder (ASD), child and parent‐related demographic and clinical correlates of ADHD symptoms, and the relationships between co‐occurring mental health problems and ADHD symptoms. Data for this cross‐sectional study came from 979 toddlers and preschoolers, ages 1.5–5 years, with ASD. The primary outcome, ADHD symptoms, was measured using the Child Behavior Check List 1.5‐5 (CBCL). Additional information from the medical record included demographics, parenting stress, and Autism Diagnostic Observation Schedule Second Edition. Descriptive and bivariate (ANOVA, Chi‐Square) statistics and multivariate, multinomial regression analyses were used to examine demographic and clinical differences between low, moderate, and high ADHD symptom groups, as defined by 2 ADHD‐related subscales. There were 418 (43%) children in the low ADHD symptom group, 294 (30%) in the moderate ADHD symptom group, and 267 (27%) in the high ADHD symptom group. Those with high ADHD symptoms were less likely to be Black or Hispanic and less likely to have parents with a graduate‐level education compared to those with low ADHD symptoms. Parenting stress and all CBCL DSM‐oriented subscales were positively associated with increasing ADHD symptoms. Among young children with ASD, ADHD symptoms were highly prevalent. The presence of ADHD symptoms was associated with increasing parenting stress and greater levels of other psychopathologies. These data suggest that young children with ASD should be evaluated for ADHD, and mental health as a whole. Lay Summary We investigated attention deficit hyperactivity disorder (ADHD) symptoms in toddlers and preschoolers with autism spectrum disorder (ASD) from a large sample with diverse race and socioeconomic background. In our study, we found that ADHD symptoms are highly prevalent in young children with ASD and are associated with increasing parenting stress and greater level of other psychopathologies, both internalizing and externalizing problems.

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“…Inclusion criteria were: (a) child ages 12–30 months, (b) ADOS‐2 Toddler Module completed at the clinic, (c) comprehensive diagnostic evaluation by a licensed physician or psychologist within 60 days of the ADOS‐2, (d) a best estimate clinical (BEC) diagnosis confirmed (ASD or not), and (e) parent consented to join the local institution's IRB‐approved clinical research registry, allowing the medical records to be used for research purposes. The registry's consent rate for this sample was 78%; greater details on the registry were reported by Kalb et al (2019). In addition to basic demographic data, information regarding parental education and marital status was obtained when it was available.…”

Section: Methodsmentioning

confidence: 81%

Replication study of ADOS‐2 Toddler Module cut‐off scores for autism spectrum disorder classification

et al. 2021

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The Autism Diagnostic Observation Schedule, Second Edition (ADOS‐2) has been regarded as the gold standard assessment of autism spectrum disorder (ASD). While clinical validity of ADOS‐2 Modules 1–4 have been extensively studied, there has been very limited research examining the clinical validity of ADOS‐2 Toddler Module. The goal of this study was to examine alignment of the ADOS‐2 Toddler Module classification with clinicians' determination of ASD, with assessing cut‐off scores for diagnosing ASD in toddlers. A total of 412 toddlers ages 12–30 months who received ADOS‐2 Toddler Module as well as a best estimate clinical (BEC) diagnosis, were included in this study. ADOS‐2 Toddler Module cut‐off scores were determined using the appropriate algorithms (Algorithm 1 for toddlers aged 12–20 months and those aged 21–30 months with <5 words, Algorithm 2 for toddlers aged 21–30 months with 5 words or more). Receiver operating characteristic (ROC) curves were used to assess cut‐off scores that optimized sensitivity and specificity when compared against BEC diagnosis. The selected cut‐off scores were examined using frequency tables to compare ADOS‐2 classification against BEC diagnosis. For Algorithm 1, classification statistics were optimized at the cut‐off score of 12 with an area under the curve (AUC) of 0.92. For Algorithm 2, classification statistics were optimized at the cut‐off score of 10 with an AUC of 0.96. The ADOS‐2 Toddler Module classification is strongly aligned with BEC diagnosis. The optimal cut‐off scores identified in the current study reflect the same results configured by the prior study. Lay Summary ADOS‐2 Toddler Module has been widely used for the ASD assessment, but there have been limited research on its clinical validity. This study is the first replication of the ADOS‐2 Toddler Module with a large independent sample. We examined alignment of the ADOS‐2 Toddler Module classification with clinicians' determination of ASD, with assessing cut‐off scores, and confirmed the clinical validity of ADOS‐2 Toddler Module. Cut‐off scores of ADOS‐2 Toddler Module cited in the manual yielded best clinical utility for diagnosing ASD in toddlers.

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Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders

Cited by 16 publications

References 34 publications

Parental relationship status and age at autism spectrum disorder diagnosis of their child

Parental relationship status and age at autism spectrum disorder diagnosis of their child

Attention Deficit Hyperactivity Disorder Symptoms in Young Children with Autism Spectrum Disorder

Replication study of ADOS‐2 Toddler Module cut‐off scores for autism spectrum disorder classification

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