Medical Care Burden of Children with Autism Spectrum Disorders

Lin, Jin Ding

doi:10.1007/s40489-014-0023-8

Cited by 9 publications

(7 citation statements)

References 38 publications

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“…Furthermore, antipsychotic medication does not have UK marketing authorisation for use in childhood ASD, although risperidone is licensed for use in the short-term management of aggression in children with conduct disorder [ 10 ]. Balancing antipsychotic risk-benefit profiles is further complicated by little safety evidence being available for children with ASD [ 11 , 12 ]. Antipsychotic use for children in general is associated with a number of adverse health outcomes, most commonly extrapyramidal side effects, obesity and hyperprolactinaemia [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

Clinical predictors of antipsychotic use in children and adolescents with autism spectrum disorders: a historical open cohort study using electronic health records

Downs

Hotopf

Ford

et al. 2015

Eur Child Adolesc Psychiatry

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Children with autism spectrum disorders (ASD) are more likely to receive antipsychotics than any other psychopharmacological medication, yet the psychiatric disorders and symptoms associated with treatment are unclear. We aimed to determine the predictors of antipsychotic use in children with ASD receiving psychiatric care. The sample consisted of 3482 children aged 3–17 with an ICD-10 diagnosis of ASD referred to mental health services between 2008 and 2013. Antipsychotic use outcome, comorbid diagnoses, and other clinical covariates, including challenging behaviours were extracted from anonymised patient records. Of the 3482 children (79 % male) with ASD, 348 (10 %) received antipsychotic medication. The fully adjusted model indicated that comorbid diagnoses including hyperkinetic (OR 1.44, 95 %CI 1.01–2.06), psychotic (5.71, 3.3–10.6), depressive (2.36, 1.37–4.09), obsessive–compulsive (2.31, 1.16–4.61) and tic disorders (2.76, 1.09–6.95) were associated with antipsychotic use. In addition, clinician-rated levels of aggression, self-injurious behaviours, reduced adaptive function, and overall parental concern for their child’s presenting symptoms were significant risk factors for later antipsychotic use. In ASD, a number of comorbid psychiatric disorders are independent predictors for antipsychotic treatment, even after adjustment for familial, socio-demographic and individual factors. As current trial evidence excludes children with comorbidity, more pragmatic randomised controlled trials with long-term drug monitoring are needed.Electronic supplementary materialThe online version of this article (doi:10.1007/s00787-015-0780-7) contains supplementary material, which is available to authorized users.

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Section: Introductionmentioning

confidence: 99%

Clinical predictors of antipsychotic use in children and adolescents with autism spectrum disorders: a historical open cohort study using electronic health records

Downs

Hotopf

Ford

et al. 2015

Eur Child Adolesc Psychiatry

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“…The long-term prognosis of most individuals with ASD is poor, namely, they lack the ability to study and work independently in adulthood (7). Therefore, these patients have to rely on parental care for extended periods and need long-term rehabilitation, which probably leads to heavy economic burden to families and society (8,9).…”

Section: Introductionmentioning

confidence: 99%

Effect of Time Interval From Diagnosis to Treatment on Economic Burden in Families of Children With Autism Spectrum Disorder

Zhou

Chen

et al. 2021

Front. Psychiatry

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The study aimed to investigate the economic costs in families of children with autism spectrum disorder (ASD) and explored how the time interval from diagnosis to treatment time interval from the date children first diagnosed with ASD to the date of first speech/behavior treatment influenced the economic costs. It was a cross-sectional study that recruited families with autistic children in Changsha, Hunan Province of China during March to November 2018. A self-designed questionnaire was applied to collect ASD-related economic costs in the two vital periods including the 12-month period after diagnosis and the most recent 12 months during the course of ASD. In total, 136 families with autistic children completed the interview. The results showed that 46.3% of children started intervention within 1 month. The median of total economic costs of these families in the 12-month period after diagnosis and the most recent 12 months was 26,502.26 RMB and 29,411.91 RMB, respectively. Compared with the time interval shorter than 1 month, time interval over 6 months was significantly associated with high direct economic costs (βSD = 0.308, 95% CI = 0.177, 1.254), inpatient/outpatient and drugs costs (βSD = 0.276, 95% CI = 0.104, 1.181), direct non-medical costs (βSD = 0.287, 95% CI = 0.140, 1.206), and total economic burden (βSD = 0.311, 95% CI = 0.186, 1.262); besides, time interval between 4 and 6 months was significantly related to large indirect costs (βSD = 0.230, 95% CI = 0.098, 1.363) in the 12-month period after diagnosis. Similarly, time interval between 1 and 3 months was significantly associated with high direct non-medical costs (βSD = 0.198, 95% CI = 0.004, 1.013) in the 12-month period after diagnosis. However, time interval from diagnosis to treatment was not correlated to economic costs in the recent 12 months. In the long term, shortening the time interval from diagnosis to treatment would reduce the economic burden on families, especially in the 12-month period after diagnosis.

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“…We soon discovered that autism is positioned as the most expensive disability for which parents need impossibly deep pockets. This is known to be true internationally (Cidav et al 2013 ; Dillenburger, McKerr & Jordan 2014 ; Fletcher, Markoulakis & Bryden 2012 ; Horlin et al 2014 ; Lin 2014 ), but what is the case in South Africa?…”

Section: Introductionmentioning

confidence: 99%

“…Parents of children with autism constitute a vulnerable community (Lin 2014 :243) because we will do anything to give our children the support they require, especially as we realise that they will outlive us, and need to do so independently. Studies reveal that parents of children with autism experience significant stress because of the need for closer parental supervision, the more dependent relationship with their children and more intense worry about the future (Benson et al 2011 :67, 76; Pepperell, Paynter & Gilmore 2016 :5).…”

Section: Introductionmentioning

confidence: 99%

“…Intervention is concentrated in childhood, with the cost of care being the highest during adulthood (Cidav et al 2013 :924). Diagnosis typically happens at 3–5 years, followed by intensive therapy, which declines during the teenage years and then comes a sharp increase in adult residential and medical care (Lin 2014 :247; Shimabukuro, Grosse & Rice 2008 :546). Families are confronted with long-term economic stress, which is a social issue (Chasson, Harris & Neely 2007 :402; Lokhandwala et al 2012 :94; Wang et al 2012 :2, 6).…”

Section: Introductionmentioning

confidence: 99%

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‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism

Clasquin-Johnson

2018

Afr. j. disabil.

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BackgroundIn this article, we reflected on our experience of the cost of parenting a child with autism, including our ongoing search for educational and therapeutic intervention.ObjectivesWe aimed to give an academic insight into the state of autism education and care in South Africa as seen by us, with special attention to its cost and sustainability.MethodsUsing evocative autoethnography as storied scholarship together with critical autism studies, we reflected on stories of the past 5 years since our son’s diagnosis.ResultsOur experiences agree with international studies that establish autism as the most expensive disability. In addition to the high costs of diagnosis, existing intervention and support approaches are unaffordable for the majority of South Africans. We recommend that teachers should be trained to participate in early screening and diagnosis, as well as co-therapists, to strengthen the implementation of inclusive education.ConclusionThe kind of autism intervention currently offered in South Africa is financially and socially unsustainable. Instead of positioning autism as an individual or family dilemma, it should be addressed as an educational and societal issue. Future research should explore cost-effective options for a developing country context, while promoting best practice within inclusive settings.

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Medical Care Burden of Children with Autism Spectrum Disorders

Cited by 9 publications

References 38 publications

Clinical predictors of antipsychotic use in children and adolescents with autism spectrum disorders: a historical open cohort study using electronic health records

Clinical predictors of antipsychotic use in children and adolescents with autism spectrum disorders: a historical open cohort study using electronic health records

Effect of Time Interval From Diagnosis to Treatment on Economic Burden in Families of Children With Autism Spectrum Disorder

‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism

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