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Practice patterns and determinants of wait time for autism spectrum disorder diagnosis in Canada.

ABSTRACT: Inefficient diagnostic practices for autism spectrum disorder (ASD) may contribute to longer wait times, delaying access to intervention. The objectives were to describe the diagnostic practices of Canadian pediatricians and to identify determinants of longer wait time for ASD diagnosis.An online survey was conducted through the Canadian Paediatric Society's developmental pediatrics, community pediatrics, and mental health sections. Participants were asked for demographic information, whether they diagnosed ASD, and elements of their diagnostic assessment. A multiple linear regression of total wait time (time from referral to communication of the diagnosis to the family) as a function of practice characteristics was conducted.A total of 90 participants completed the survey, of whom 57 diagnosed ASD in their practices (63.3%). Respondents reported varied use of multi-disciplinary teams, with 53% reporting participation in a team. No two identically composed teams were reported. Respondents also had varied use of diagnostic tools, with 21% reporting no use of tools. The median reported total wait for ASD diagnosis time was 7 months (interquartile range 4-12 months). Longer time spent on assessment was the only variable that remained significantly associated with longer wait time in multiple regression (p?=?0.002). Use of diagnostic tools did not significantly affect wait time.Canadian ASD diagnostic practices vary widely and wait times for these assessments are substantial-7 months from referral to receipt of diagnosis. Time spent on the assessment is a significant determinant of wait time, highlighting the need for efficient assessment practices.

SUBMITTER: Penner M

PROVIDER: S-EPMC5840789 | biostudies-other | 2018

REPOSITORIES: biostudies-other

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Practice patterns and determinants of wait time for autism spectrum disorder diagnosis in Canada.

Penner Melanie M Anagnostou Evdokia E Ungar Wendy J WJ

Molecular autism 20180306

<h4>Background</h4>Inefficient diagnostic practices for autism spectrum disorder (ASD) may contribute to longer wait times, delaying access to intervention. The objectives were to describe the diagnostic practices of Canadian pediatricians and to identify determinants of longer wait time for ASD diagnosis.<h4>Methods</h4>An online survey was conducted through the Canadian Paediatric Society's developmental pediatrics, community pediatrics, and mental health sections. Participants were asked for ...[more]

PMID: 29541438

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Project description:ImportanceIn recent years, rates of vaccination have been declining. Whether this phenomenon disproportionately affects children with autism spectrum disorder (ASD) or their younger siblings is unknown.ObjectivesTo investigate if children after receiving an ASD diagnosis obtain their remaining scheduled vaccines according to the Advisory Committee on Immunization Practices (ACIP) recommendations and to compare the vaccination patterns of younger siblings of children with ASD with the vaccination patterns of younger siblings of children without ASD.Design, setting, and participantsThis investigation was a retrospective matched cohort study. The setting was 6 integrated health care delivery systems across the United States within the Vaccine Safety Datalink. Participants were children born between January 1, 1995, and September 30, 2010, and their younger siblings born between January 1, 1997, and September 30, 2014. The end of follow-up was September 30, 2015.ExposuresRecommended childhood vaccines between ages 1 month and 12 years.Main outcome and measureThe proportion of children who received all of their vaccine doses according to ACIP recommendations.ResultsThe study included 3729 children with ASD (676 [18.1%] female), 592?907 children without ASD, and their respective younger siblings. Among children without ASD, 250?193 (42.2%) were female. For vaccines recommended between ages 4 and 6 years, children with ASD were significantly less likely to be fully vaccinated compared with children without ASD (adjusted rate ratio, 0.87; 95% CI, 0.85-0.88). Within each age category, vaccination rates were significantly lower among younger siblings of children with ASD compared with younger siblings of children without ASD. The adjusted rate ratios varied from 0.86 for siblings younger than 1 year to 0.96 for those 11 to 12 years old. Parents who had a child with ASD were more likely to refuse at least 1 recommended vaccine for that child's younger sibling and to limit the number of vaccines administered during the younger sibling's first year of life.Conclusions and relevanceChildren with ASD and their younger siblings were undervaccinated compared with the general population. The results of this study suggest that children with ASD and their younger siblings are at increased risk of vaccine-preventable diseases.

Project description:BACKGROUND: Introduction of proposed criteria for DSM-5 Autism Spectrum Disorder (ASD) has raised concerns that some individuals currently meeting diagnostic criteria for Pervasive Developmental Disorder (PDD; DSM-IV-TR/ICD-10) will not qualify for a diagnosis under the proposed changes. To date, reports of sensitivity and specificity of the new criteria have been inconsistent across studies. No study has yet considered how changes at the 'sub domain' level might affect overall sensitivity and specificity, and few have included individuals of different ages and ability levels. METHODS: A set of DSM-5 ASD algorithms were developed using items from the Diagnostic Interview for Social and Communication Disorders (DISCO). The number of items required for each DSM-5 subdomain was defined either according to criteria specified by DSM-5 (Initial Algorithm), a statistical approach (Youden J Algorithm), or to minimise the number of false positives while maximising sensitivity (Modified Algorithm). The algorithms were designed, tested and compared in two independent samples (Sample 1, N = 82; Sample 2, N = 115), while sensitivity was assessed across age and ability levels in an additional dataset of individuals with an ICD-10 PDD diagnosis (Sample 3, N = 190). RESULTS: Sensitivity was highest in the Initial Algorithm, which had the poorest specificity. Although Youden J had excellent specificity, sensitivity was significantly lower than in the Modified Algorithm, which had both good sensitivity and specificity. Relaxing the domain A rules improved sensitivity of the Youden J Algorithm, but it remained less sensitive than the Modified Algorithm. Moreover, this was the only algorithm with variable sensitivity across age. All versions of the algorithm performed well across ability level. CONCLUSIONS: This study demonstrates that good levels of both sensitivity and specificity can be achieved for a diagnostic algorithm adhering to the DSM-5 criteria that is suitable across age and ability level.

Project description:This study aimed to identify determinants of a late autism spectrum disorder diagnosis, including diagnoses made 'very late' (i.e., in adolescence), using the Millennium Cohort Study, a nationally representative population-based cohort in the United Kingdom. Children diagnosed with autism spectrum disorder by age 14 (N = 581) were included and grouped by the parent-reported timing of diagnosis: before school (up to age 5), during primary school (age 5-11) and during secondary school (age 11-14). Predictors of diagnostic timing, at the child, family and school levels, were investigated using multinomial logistic regression. Most (79%) children with autism spectrum disorder were diagnosed after school entry, and 28% were not diagnosed until secondary school. Among those not diagnosed until secondary school, 75% had been identified at age 5 years by a parent and/or teacher as having socio-behavioural difficulties. Being diagnosed after starting school was predicted by living in poverty (adjusted relative risk ratio: primary = 1.90, 95% confidence interval: 1.03-3.53; secondary = 2.15, 1.05-4.42) and/or having no initial parental concerns (primary = 0.32, 0.15-0.70; secondary = 0.19, 0.09-0.43). Having typical-range intelligence also predicted diagnosis during secondary school. The result indicates that those without cognitive delays and poorer children were at risk of 'very late' (i.e. adolescent) diagnosis. Strategies to promote earlier identification, targeting age at primary school entry, could help those more likely to be diagnosed late.Lay abstractDespite policy emphasis on early identification, many children with autism spectrum disorder are diagnosed late, with some being diagnosed as late as in adolescence. However, evidence on what determines the timing of autism spectrum disorder diagnosis including children diagnosed in adolescence is lacking. Understanding these determinants, particularly in those diagnosed later than is ideal, can inform the development of effective strategies to improve earlier identification of autism spectrum disorder. This study used a nationally representative population-based cohort in the United Kingdom to explore child, family and school level predictors of timing of autism spectrum disorder diagnosis. In the United Kingdom, 79% of the children with autism spectrum disorder were diagnosed after entering primary school and 28% during secondary school. Among those not diagnosed until secondary school, 75% had shown social difficulties noticed by parents and/or teachers at age 5 years. The results suggest that healthcare providers should be aware that, even for universal systems of care, those living in poverty and having higher intelligence are most likely to miss out on a timely diagnosis. Strategies to promote earlier identification among school-aged children, including targeting primary school entry age (i.e. around age 5) and that encouraging referrals for a formal assessment at the first report of concerns over the child's social development may benefit those children who would otherwise be diagnosed later.

Project description:Diagnosis of autism spectrum disorder (ASD) before the age of three years is a challenge. Analyzing the present practice may help reaching that goal. To investigate developmental abnormalities and diagnostic pathway of ASD patients in pediatric practice. Retrospective cross-sectional study of 192 children aged 13 months to 17 years 11 months (average 4 years 9 months), investigated in an outpatient and hospital setting from January 2015 to June 2018 by a semi-structured history and clinical examination, and diagnosed with ASD by Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria. Behavioral peculiarities were detected in the history of the first two years of life in 74.8% of the subjects. The first developmental abnormalities were noticed by the parents at ages from 8 to 36 months (mean 15.6 months) and were predominantly in speech (in 94.6%) and non-verbal communication (11.3%). Developmental regression was reported in 42.1% of the patients occurring between the ages of 6 and 50 months (mean 17.9 months), affecting most commonly speech (88.4% of cases), non-verbal communication (29.2%), and behavior (12.8%). By history, the first manifestations of ASD were noticed at ages from 8 months to 84 months (mean 18.5 months), and were disorders of expressive speech (in 66.7% of cases), receptive speech (in 45.8%), non-verbal communication (35.4%), behavior (27.6%), play (8.9%), socialization (5.7%), and joint attention (2.1%). The most common motive for specialized consultation was delay in language development-in 84.6% of children. The age of ASD diagnosis varied between 12 and 132 months (mean 39.7 months), and the time period between first ASD manifestations and diagnosis was in the range of 0 to 79 months (mean 23.3 months). Many symptoms of abnormal social communication, unnoticed by parents, were detected objectively in more than 95% of the cases-absent or rare spontaneous or reciprocal smile; lack of sharing of interest or affect; abnormal eye contact; lack of finger pointing; lack of gaze to a pointed object; poor facial expressions; lack of imaginary play, etc. Conclusions: Almost two years are needed for diagnosing abnormal development in other domains besides speech in ASD patients. Diagnosis before the age of three years can be achieved by focusing parents' and pediatricians' attention on social communication and behavior in patients with speech delay or developmental regression.

Project description:Recent research on autism spectrum disorders (ASDs) suggests that individuals with autism may have a basic deficit in synchronizing with others, and that this difficulty may lead to more complex social and communicative deficits. Here, we examined synchronization during an open-ended joint improvisation (JI) paradigm, called the mirror game (MG). In the MG, two players take turns leading, following, and jointly improvising motion using two handles set on parallel tracks, while their motion tracks are recorded with high temporal and spatial resolution. A series of previous studies have shown that players in the MG attain moments of highly synchronized co-confident (CC) motion, in which there is no typical kinematic pattern of leader and reactive follower. It has been suggested that during these moments players act as a coupled unit and feel high levels of connectedness. Here, we aimed to assess whether participants with ASD are capable of attaining CC, and whether their MG performance relates to broader motor and social skills. We found that participants with ASD (n = 34) can indeed attain CC moments when playing with an expert improviser, though their performance was attenuated in several ways, compared to typically developing (TD) participants (n = 35). Specifically, ASD participants had lower rates of CC, compared with TD participants, which was most pronounced during the following rounds. In addition, the duration of their CC segments was shorter, across all rounds. When controlling for participants' motor skills (both on the MG console, and more broadly) some of the variability in MG performance was explained, but group differences remained. ASD participants' alexithymia further correlated with their difficulty following another's lead; though other social skills did not relate to MG performance. Participants' subjective reports of the game suggest that other cognitive and emotional factors, such as attention, motivation, and reward-processing, which were not directly measured in the experiment, may impact their performance. Together, these results show that ASD participants can attain moments of high motor synchronization with an expert improviser, even during an open-ended task. Future studies should examine the ways in which these skills may be further harnessed in clinical settings.

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Practice patterns and determinants of wait time for autism spectrum disorder diagnosis in Canada.

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Practice patterns and determinants of wait time for autism spectrum disorder diagnosis in Canada.

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