Autismespectrumstoornis bij kinderen/jeugd

Initiatief: NVvP psychiatrie Aantal modules: 16

Vroege interventies

Uitgangsvraag

Wat is de plaats van vroege interventies in de zorg voor jonge kinderen met autisme?

Aanbeveling

De klassieke ABA is niet opgekomen in de systematische search. Op basis van expert opinion, wordt de klassieke ABA door de werkgroep afgeraden.

 

De werkgroep beveelt nader onderzoek aan naar de moderne vroege interventies bij autisme gericht op opvoedondersteuning en vaardighedentraining voor ouders (i.t.t. klassieke ABA-vormen die gericht waren op veranderen van het autistische kind).

Overwegingen

In deze module hanteert de werkgroep de termen ‘klassieke ABA’ en ‘moderne vroege interventies’ (niet-ABA). De term moderne vroege interventies verwijst naar behandelingen met een lage behandelintensiteit (1 uur per week, 10-20 sessies in totaal), waarbij geen sprake is van het afleren van gedrag. Onder klassieke vormen van ABA verstaat de werkgroep een intensieve behandelvorm, met een frequentie van 5-20 uur per week en langere behandelduur (30wk).

 

In de literatuur is gezocht naar de wetenschappelijke onderbouwing van de effectiviteit van vroege interventies in de behandeling van jonge kinderen met autisme. In totaal zijn er één systematische review (met daarin zes relevante RCTs) en zes aanvullende RCTs gevonden over verschillende soorten vroege (gedragsmatige) interventies bij kinderen met autisme. Naast enkele methodologische beperkingen, zoals het feit dat geen enkele studie geblindeerd was, waren de studiepopulaties relatief klein, was er sprake van brede betrouwbaarheidsintervallen, conflicterende resultaten en variabiliteit in de (wijze van rapporteren van) uitkomstmaten. De bewijskracht voor effectiviteit gemeten met de geselecteerde uitkomstmaten is beoordeeld als zeer laag. De algehele bewijskracht komt hiermee uit op zeer laag. Uit de literatuursearch kwamen geen onderzoeken naar voren die zich richtten op klassieke ABA.

 

Negatieve effecten maakten geen deel uit van het literatuuronderzoek. Het is belangrijk stil te staan bij de mogelijkheid dat die wel zouden optreden. Het onderzoeksrapport “Ervaringen van mensen met autisme, ouders en zorgverleners met ABA (Applied Behavior Analysis)-behandelingen in Nederland” van het Nederlands Autisme Register (NAR) besteedt hier aandacht aan.

 

De werkgroep heeft veel discussie gevoerd over de inhoud van deze module, en de positie van  de werkgroep in het huidige maatschappelijke debat. Het veld heeft duidelijk gemaakt dat klassieke vormen van ABA schadelijke gevolgen hebben gehad voor betrokkenen, wat zeer betreurenswaardig is en niet had mogen gebeuren.
Tegelijkertijd zijn er meer vroege interventies dan de traditionele ABA vormen die weliswaar soms onder de paraplu van klassieke ABA geschaard worden, maar dat niet noodzakelijkerwijs zijn. Als werkgroep onderscheiden we de klassieke vormen van ABA waarvan signalen zijn van potentiële schadelijkheid (zie rapport Nederlands Autisme Register) en anderzijds andere, moderne vormen van vroege interventies. Over deze laatste groep worden dergelijke signalen minder gehoord, en hoort de werkgroep juist positieve signalen.


De werkgroep wil voorkomen dat in het veld handelingsverlegenheid ontstaat waardoor de hulpvraag van kinderen en ouders niet meer beantwoord kan worden. Na uitgebreid overleg en zorgvuldige afwegingen heeft de werkgroep daarom besloten klassieke vormen van ABA af te raden, en een research aanbeveling geformuleerd die zich richt op de andere, moderne vormen van vroege interventies. Dit doet naar de mening van de werkgroep recht aan de complexiteit van dit onderwerp en de huidige maatschappelijke discussie die verder gevoerd moet worden.

Onderbouwing

Een hulpvraag van gezinnen met jonge kinderen met autisme betreft vaak het zo goed mogelijk begeleiden van de ontwikkeling van het kind. In Nederland worden er verschillende interventies aangeboden voor jonge kinderen (grofweg tot 6 jaar) met autisme. De werkgroep heeft daarom literatuuronderzoek gedaan naar de effectiviteit van verschillende interventies.

 

Het literatuuronderzoek  focust zich hierbij op twee typen interventies die in de Nederlandse praktijk worden uitgevoerd: behandelingen met een primaire focus op de ouder-kindinteractie (Floorplay en VIPP Auti), en vroege interventies die zich meer richten op het versterken van vaardigheden van het kind (JASPER, Pivotal Response Treatment (PRT), e.d.). Vroege interventies met één eenduidig doel zoals logopedie worden niet meegenomen in deze module, omdat deze gefocust zijn op één aspect, terwijl de werkgroep het literatuuronderzoek heeft gericht op de stimulering van de gehele vroege sociale communicatie en interactie als een samenhangend geheel. 

 

Het is van belang om al het recent verschenen wetenschappelijk onderzoek over vroege interventies gericht op het stimuleren van de vroege ontwikkeling van sociale communicatie en interactie onder elkaar te zetten om het veld  te informeren over de wetenschappelijke evidentie voor deze interventies tot aan het verschijnen van deze richtlijn.

 

Tijdens de totstandkoming van deze module is in mei 2024 het onderzoeksrapport “Ervaringen van mensen met autisme, ouders en zorgverleners met ABA (Applied Behavior Analysis)-behandelingen in Nederland” van het Nederlands Autisme Register (NAR) verschenen. De werkgroep heeft kennis genomen van dit rapport dat werd geschreven in opdracht van het Ministerie van Volksgezondheid, Welzijn en Sport. Onder “Overwegingen” staat beschreven hoe deze bevindingen zijn meegenomen in deze module. 

1. Social communication

Very low GRADE

The evidence is very uncertain about the effect of early behavioral interventions on social communication when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: Dawson, 2010; Estes, 2015; Kasari, 2015; van den Berk-Smeekens, 2021.

Very low GRADE

 

The evidence is very uncertain about the effect of parent-child interaction interventions on social communication when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: Poslawsky, 2015; Ginn, 2017; Rogers, 2012; Oosterling, 2010; Pajareya, 2011; Tonge, 2014.

2. Adaptive behavior

Very low GRADE

The evidence is very uncertain about the effect of early behavioral interventions on adaptive behavior when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: Dawson, 2010; Estes, 2015.

Very low GRADE

The evidence is very uncertain about the effect of parent-child interaction interventions on adaptive behavior when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: Rogers, 2012; Tonge, 2014.

3. Emotion regulation

No GRADE

No evidence was found regarding the effect of early behavioral interventions on emotion regulation when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: -

Very low GRADE

The evidence is very uncertain about the effect of parent-child interaction interventions on emotion regulation when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: Pajareya, 2011.

4. Global functioning

Low GRADE

Early behavioral interventions may result in little to no difference in global functioning when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: Van den Berk-Smeekens, 2021.

No GRADE

No evidence was found regarding the effect of parent-child interaction interventions on global functioning when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: -

5. Patient satisfaction

No GRADE

No evidence was found regarding the effect of early behavioral interventions on patient satisfaction when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: -

 

Very low GRADE

The evidence is very uncertain about the effect of early interventions on emotion regulation when compared with standard care, TAU or waitlist control in children and adolescents with ASD.

 

Source: Poslawsky, 2015; Nefdt, 2010; Tellegen, 2014.

Description of studies

Deb (2020) performed a systematic review and meta-analysis to assess the effectiveness of parent training interventions for children with ASD. The electronic databases CINAHL, EMBASE, MEDLINE and PsycINFO were comprehensively searched until 1 November 2017, which was subsequently updated up to March 1st, 2020. Inclusion criteria were: 1) RCTs with a minimum sample size of ten, 2) participants in the intervention group were all parents of children (aged 1-18) with a diagnosis of ASD, 3) studies that included training programs for parents of children with ASD as the intervention, and 4) studies that reported any standardized, measurable, repeatable outcome measure. Studies were excluded if 1) psychoeducation was used as a control intervention, and 2) children were also directly involved in the intervention procedure. A total of fifteen studies were included in the systematic review, of which six were conform our selection criteria and were therefore described and analyzed in the current literature analysis (Nefdt, 2010; Pajareya, 2011; Rogers, 2012; Tonge, 2014; Tellegen, 2014; Oosterling, 2010). These studies are individually described in more detail in Table 1. No funding was obtained for this research, and the authors declare no competing interests.

 

Dawson (2010) conducted an RCT to evaluate the efficacy of the Early Start Denver Model (ESDM) for improving outcomes of children with a diagnosis of ASD. A total of 48 children aged 18-30 months diagnosed with ASD or PDD not otherwise specified (NOS) based on DSM-IV criteria were included. Exclusion criteria were: 1) a neurodevelopmental disorder of known etiology (e.g., fragile X syndrome), (2) significant sensory or motor impairment, 3) major physical problems (e.g., chronic serious health condition), 4) seizures at time of entry, 5) use of psychoactive medications, 6) history of neurologic disease and/or a serious head injury, 7) alcohol or drug exposure during the prenatal period, and 8) ratio IQ < 35. Participants were randomly assigned to either the ESDM group or the assess-and-monitor (A/M) group. This trial was conducted at the University of Washington Autism Center and was funded by the National Institute of Mental Health grant. Dawson and Rogers are (co-)authors of ESDM for young children with autism from which they received royalty payments.

 

Estes (2015) prospectively examined evidence for the sustained effects of early intervention based on a follow-up study (Dawson, 2010). The children who participated in the RCT of Dawson (2010) were assessed at age 6 years. This research was supported by grants from the National Institute of Child Health and Human Development and the National Institute of Mental Health. Estes received grant and research funding, and Rogers and Dawson received royalty payments and material fees related to the ESDM due to (co-)authorship.

 

Kasari (2015) conducted a randomized comparative efficacy study to compare the effects of two parent-medicated interventions for toddlers with ASD. A total of 86 toddlers aged 22-36 months with a diagnosis of ASD confirmed by independent testers with the Autism Diagnostic Interview-Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS), and their primary caregivers were included in this study. Children were excluded if they had significant physical disabilities or if parent and child were not available for follow-up assessments. Participants were randomly assigned to either the JASPER-Parent-medicated group or Psychoeducational intervention group. This study was supported by NICHD and Autism Center of Excellence. Although information about potential conflicts of interest was not provided, Kasari has developed the JASPER training.

 

Van den Berk-Smeekens (2021) performed an RCT to assess the efficacy of PRT compared to TAU in improving general social-communicative skills and clinical global functioning for children with autism. The study was conducted within the context of clinical outpatient units of Karakter in The Netherlands. In total, 73 children aged 3-8 years with a diagnosis of ASD according to the DSM-IV classification with a TIQ ≥ 70 were included. Fixed medication dosage was required for participants in the PRT group. An exclusion criterion was having received PRT previously. Participants were randomly assigned to either PRT, robot-assisted PRT or TAU. Robot-assisted PRT was not conform our PICO and was therefore disregarded in the current literature analysis. This study was funded by a ZonMw grant and by Karakter and was further supported by the EU-AIMS program. Buitelaar has been a member of the advisory board of pharmaceutical companies and has been a speaker for pharmaceutical companies in the past three years. He did not receive other financial or material support. The other authors declare to have no conflict of interest. 

 

Poslawsky (2015) performed an RCT to evaluate the early intervention program Video-feedback Intervention to promote Positive Parenting adapted to Autism (VIPP-Auti). A total of 78 children aged 16-61 months with ASD and their primary caregivers were included. Exclusion criteria were 1) no understanding/speaking of the Dutch language, 2) primary caregivers who did not care for their child themselves, and 3) children with interfering comorbid medical problems. Participants were randomly divided into the VIPP-Auti group or the care as usual group. Two authors that contributed to the study were supported by research awards. Although information about potential conflicts of interest was not provided, Poslawsky is known as the developer of the VIPP-Auti.

 

Ginn (2017) performed an RCT to examine the efficacy of Child-Directed Interaction Training (CDIT) for children with ASD. Participants included thirty families with children aged 3-7 years with a diagnosis of ASD. Inclusion criteria included 1) children had to demonstrate cognitive functioning at the 2-year-old level or higher and speak a minimum of three words, 2) caregivers had to agree to attend all scheduled sessions, 3) caregivers had to attain a standard score of ≥75 on a cognitive screening measure or have completed at least two years of college. Children receiving other behavioral interventions were excluded. Fixed medication dosage/type was required for participants in the CDIT group. Participants were randomly assigned to either the CDIT immediate treatment group or the waitlist control group. This research was supported by grants from the University of Florida’s Center for Pediatric Psychology and Family Studies. Information about potential conflicts of interest was not provided.

 

Study characteristics of the included studies are shown in Table 1.

 

Table 1. Characteristics of included studies

Study

Patients

Intervention

Comparison

Outcomes of interest reported

Follow-up

Characteristics

Type

Characteristics

Type

Early behavioral interventions

Dawson, 2010

Children aged between 18-36 months diagnosed with ASD or PDD NOS

n = 24

Mean age (SD): 23.9 (4.0) months

Male (%): NR

 

Ethnicity

Asian: 12.5%*

White: 72.9%*

Latino: 12.5%*

Multiracial: 14.6%*

 

Maternal education: NR

ESDM group received  2-hour ESDM sessions, twice per day, 5 days per week, for 2 years. Parents received parent training during semimonthly meetings.

n = 24

Mean age (SD): 23.1 (3.9) months

Male (%): NR

 

Ethnicity

Asian: 12.5%*

White: 72.9%*

Latino: 12.5%*

Multiracial: 14.6%*

 

Maternal education: NR

Assess-and-monitor group received diagnostic evaluations, intervention recommendations and community referrals at baseline and at each follow-up assessment.

Social communication (ADOS-CCS)

Adaptive behavior (VABS composite score) 

2 years

Estes, 2015

Children diagnosed with an ASD at age 18-30 months

n = 21

Mean age (SD): 72.9 (2.6) months*

Male (%): 76.2%

Ethnicity: NR

 

Maternal education

College grad: 62%

Some college: 28%

No college: 10%

ESDM group received 2-hour ESDM sessions, twice per day, 5 days per week, for 2 years. Parents received parent training during semimonthly meetings.

n = 18

Mean age (SD): 72.9 (2.6) months*

Male (%): 77.8%

Ethnicity: NR

 

Maternal education

College grad: 70%

Some college: 18%

No college: 12%

Assess-and-monitor group received diagnostic evaluations, intervention recommendations and community referrals at baseline and at each follow-up assessment.

Social communication (ADOS total)

Adaptive behavior (VABS composite score) 

Age 6 assessment of Dawson (2010)

Kasari, 2015

Children aged <36 months with a diagnosis of ASD

n = 43

Mean age (SD): 30.7 (3.5) months

Male (%): 81%

 

Ethnicity

African American: 0%

Caucasian: 63%

Hispanic: 7%

Asian: 9%

Other: 21%

 

Mean maternal education (SD): 17.2 (2.3) years

JASPER model included the child and his/her parent for 1-hour weekly sessions for 10 weeks with active coaching of the parent by a trained interventionist.

n = 43

Mean age (SD): 32.3 (2.7) months

Male (%): 81%

 

Ethnicity

African American: 5%

Caucasian: 60%

Hispanic: 9%

Asian: 14%

Other: 12%

 

Mean maternal education (SD): 16.4 (2.6) years

Psychoeducational intervention consisting of 1:1 interventionist meetings of 1 hour per week for 10 weeks, aiming to provide individual education and support to parents of young children with ASD.

Social communication (joint engagement, initiations of joint attention)

6 months

Van den Berk-Smeekens, 2021

Children aged 3-8 years with a diagnosis of ASD

n = 25

Mean age (SD): 6.43 (1.71) years

Male (%): 88%

Ethnicity: NR

 

Maternal education

Low: 16.7%

Average: 50.0%

High: 33.3%

PRT consisting of 14 parent-child sessions, 4 parent-only sessions, and 2 teacher sessions. Each session had a duration of 45 min.

n = 23

Mean age (SD): 6.09 (1.30) years

Male (%): 82.61%

Ethnicity: NR

 

Maternal education

Low: 21.7%

Average: 26.1%

High: 52.2%

TAU condition consisted of guidance of parents, intensive family therapy, treatment at school, social skill training, pharmacotherapy, or a combination.

Social communication (ADOS-2 CSS)

Global functioning (CGI-I)

 

 

3 months

Parent-child interaction early interventions

Poslawsky, 2015

Primary caregiver(s) of children aged 16-61 months with ASD

n = 40

Caregivers

Mean age (SD): 36.8 (4.84) years

Male (%): 10%*

 

Children

Mean age (SD): 42.16 (9.02) months

Male (%): NR

 

Ethnicity: NR

Maternal education: NR

VIPP-Auti comprising 5 home visits of 60-90 min each at a 2-weekly frequency. Additionally, two group meetings for psycho-education about ASD in general were provided.

n = 38

Caregivers

Mean age (SD): 36.42 (5.30) years

Male (%): 10%*

 

Children

Mean age (SD): 43.80 (10.92) months

Male (%): NR

 

Ethnicity: NR

Maternal education: NR

Usual care consisting of 5 1.5-hour home-based nursing care sessions. It was meant to support the parents with respect to practical issues of parenting a child with ASD. Additionally, two group meetings for psycho-education about ASD in general were provided.

Social communication (ESCS)

Patient satisfaction (CSQ-8)

 

3 months

Ginn, 2017

Families with children diagnosed with ASD

n = 15

Mean age (SD): 4.32 (1.16) years

Male (%): 80%

Ethnicity (%Caucasian): 86.7%

Maternal education (% completed ≥2 years college): 80%

Weekly child-directed interaction training sessions of 60 to 75 minutes long.

n = 15

Mean age (SD): 5.12 (1.39) years

Male (%): 80%

Ethnicity (%Caucasian): 80%

Maternal education (% completed ≥2 years college): 86.7%

Waitlist

Social communication (SRS)

 

16 weeks

Nefdt, 2010Ñ

Primary caretakers of children aged < 60 months with autism

n = 13

Caregivers

Mean age (SD): 36.31 (5.38) years

Male (%): 12%*

 

Children

Mean age (SD): 38.92 (14.57) months

Male (%): 92.6%*

 

Ethnicity: NR

Maternal education: NR

PRT consisting of an interactive DVD with an accompanying manual covering the procedures used in PRT. 

n = 14

Caregivers

Mean age (SD): 36.21 (4.54) years

Male (%): 12%*

 

Children

Mean age (SD): 38.43 (11.20) months

Male (%): 92.6%*

 

Ethnicity: NR

Maternal education: NR

Waitlist

Patient satisfaction

No follow-up

Pajareya, 2011Ñ

Children aged 2-6 years and their parents

n = 16

Mean age (SD): 56.6 (10.1) months

Male (%): 81.3%

Ethnicity: NR

Mother with bachelor’s degree or higher: 62.5%

Home-based DIR/Floortime parent training consisting of visits and a 3-hour DVD lecture plus manual.

n = 16

Mean age (SD): 51.5 (13.9) months

Male (%): 62.5%

Ethnicity: NR

Mother with bachelor’s degree or higher: 87.5%

TAU for three months while waiting for the DIR/Floortime parent training

Social communication (CARS)

Emotion regulation (FEAS)

3 months

Rogers, 2012Ñ

Toddlers at risk for ASD aged 12-24 months and their families

n = 49

Mean age (SD): 21.02 (3.51) months

Male (%): 75.5%

Ethnicity white: 69.4%

 

Maternal education

Less than high school: 12.8%

Some college: 21.3%

College: 36.2%

Graduate school: 29.8%

P-ESDM consisting of 12 consecutive 1-hour sessions.

n = 49

Mean age (SD): 20.94 (3.42) months

Male (%): 62.5%

Ethnicity white: 75.5%

 

Maternal education

Less than high school: 27.1%

Some college: 16.7%

College: 43.8%

Graduate school: 12.5%

TAU

Social communication (ADOS-T)

Adaptive behavior (VABS composite score) 

 

24 months

Tonge, 2014Ñ

Children aged 2,5 to 5 years diagnosed with ASD and their parents

n = 35

Mean age (SD): 43.24 (7.35) months

Male (%): 87.88%

 

Ethnicity: NR

Maternal education: NR

Parent education and counseling (PEAC) intervention consisting of a manual based education program. 10 90-min small group sessions were alternated with 10 60-min individual family sessions.

n = 35

Mean age (SD): 50.11 (9.90) months

Male (%): 11.43%

 

Ethnicity: NR

Maternal education: NR

TAU consisting of local early childhood services

Social communication (CARS)

Adaptive behavior (VABS subscales)

6 months

Tellegen, 2014Ñ

Parents or caregivers of a 2- to 9-year old child with an ASD diagnosis.

n = 35

Caregivers

Mean age (SD): 36.83 (4.66) years

Male (%): NR

 

Children

Mean age (SD): 5.66 (2.18) years

Male (%): 82.86%

 

Ethnicity

White/Australian: 88.57%

Other: 11.43%

Parental education

High school: 45.71%

TAFE/trade/university: 54.29%

Primary care stepping stones triple P: a brief parenting program consisting of four short sessions

n = 29

Caregivers

Mean age (SD): 38.07 (5.03) years

Male (%): NR

 

Children

Mean age (SD): 5.69 (2.12) years

Male (%): 89.66%

 

Ethnicity

White/Australian: 89.66%

Other: 10.34%

Parental education

High school: 51.72%

TAFE/trade/university: 48.28%

Care as usual

Patient satisfaction (CSQ)

6 months

Oosterling, 2010Ñ

Children aged 12-42 months with ASD and their parents

n = 36

Mean age (SD): 35.2 (5.5) months

Male (%): 75.0%

Ethnicity: NR

 

Maternal education

Low: 41.7%

Middle: 33.3%

High: 25.0%

 

Paternal education

Low: 34.3%

Middle: 20.0%

High: 45.7%

The Focus Parent Training intervention program using a parent-as-therapist model and adopting an eclectic approach within a social-pragmatic and developmental context. It consisted of weekly 2-hour group sessions as well as 3-hour home visits every 6 weeks.

n = 31

Mean age (SD): 33.3 (6.4) months

Male (%): 80.6%

Ethnicity: NR

 

Maternal education

Low: 41.9%

Middle: 35.5%

High: 22.6%

 

Paternal education

Low: 56.7%

Middle: 26.7%

High: 16.7%

Care as usual consisting of speech and language therapy, motor therapy, music therapy, and play therapy on an individual basis.

Social communication (ADOS)

12 months

Abbreviations: ADOS(-T) = autism diagnostic observation schedule (for toddlers); ASD = autism spectrum disorder; CARS = childhood autism rating scale; CGI-I = clinical global impression-improvement scale; CSQ = client satisfaction questionnaire; DIR = developmental, individual-difference, relationship-based; ESCS = early social communication scales; ESDM = early start Denver model; FEAS = functional emotional assessment scale; NR = not reported; PDD = pervasive development disorder; PRT = pivotal response treatment; SD = standard deviation; SRS = social responsiveness scale; TAU = treatment as usual; VABS = vineland adaptive behavior scales; VIPP-Auti = Video-feedback intervention to promote positive parenting adapted to autism.

* Values reported are for the total population

Ñ Selected based on study selection by Deb (2020)

Results

1. Social communication

Ten studies reported on the outcome measure social communication. Data could not be pooled due to the heterogeneity in reporting of the outcome measure social communication. Results on social communication are displayed in Table 2.  

 

Table 2. Results on social communication

Study

Intervention

Control

Instrument

Range

Result

Timepoint(s)

Mean Difference (95%CI)

Clinically relevant (yes/no)

Intervention (mean ± SD)

Control

(mean ± SD)

Early behavioral interventions

 

Dawson, 2010

ESDM

Assess-and-monitor

ADOS CSS

0-10

6.5 ± 1.5 (n=24)

7.3 ± 2.1 (n=23)

1 year 

-0.80 (-1.85 to 0.25)

No

7.0 ± 1.9 (n=24)

7.3 ± 1.8 (n=21)

2 years

-0.30 (-1.38 to 0.78)

No

Estes, 2015

ESDM

Assess-and-monitor

ADOS total

Restricted/repetitive + social affect

 

 

11.2 ± 6.9 (n=21)

16.0 ± 6.6 (n=18)

Age 6 years

-4.80 (-9.04 to -0.56)

Yes

Kasari, 2015

JASPER

PEI

Coding system

Adapted from Adamson (2009)

Time joint engaged

363.7 ± 132.5 seconds (n=43)

266.7 ± 199.9 seconds (n=43)

 

6 months

97.00 (25.32 to 168.68)

Yes

Coding system

IJA

8.7 ± 8.6 (n=43)

 

6.8 ± 5.7 (n=43)

6 months

1.90 (-1.18 to 4.98)

No

Van den Berk-Smeekens, 2021

PRT

TAU

ADOS-2 CSS

0-10

Percentage decrease

38.6% (n=25)

 

22.2% (n=23)

20 weeks

1.84 (0.74 to 4.58)*

Yes

Parent-child interaction early interventions

 

Poslawsky, 2015

VIPP-Auti

Usual care

ESCS

IJA sum score

33.4 ± 6.9 (n=38)

34.4 ± 5.7 (n=34)

3 months

-1.00 (-3.91 to 1.91)

No

ESCS

RJA sum score

51.7 ± 17.4 (n=38)

52.9 ± 18.0 (n=34)

3 months

-1.20 (-9.40 to 7.00)

No

Ginn, 2017

CDIT

Waitlist control

SRS

Composite score

0-195

80.5 ± 12.2 (n=15)

 

82.3 ± 8.9 (n=15)

10 weeks

-1.80 (-9.44 to 5.84)

No

Rogers, 2012

P-ESDM

TAU

ADOS-T

Social affect

 

 

26.6 ± 10.1 (n=49)

 

27.3 ± 10.6 (n=49)

12 weeks

-0.70 (-4.80 to 3.40)

No

ADOS-T

Restrictive/repetitive

 

 

4.0 ± 1.9 (n=49)

3.8 ± 2.0 (n=49)

12 weeks

0.20 (-0.57 to 0.97)

No

Oosterling, 2010

Focus Parent Training

Usual care

ADOS

Joint attention factor

 

Mean change

-0.8 ± 2.3 (n=33)

-0.9 ± 0.2 (n=31)

12 months

0.10 (-0.69 to 0.89)

No

ADOS

Social affect

 

Mean change

-2.5 ± 4.0 (n=33)

-2.3 ± 3.7 (n=31)

12 months

-0.20 (-2.09 to 1.69)

No

Pajareya, 2011

DIR/Floortime

TAU

CARS

15-60

Mean change

2.9 ± 2.0 (n=15)

0.8 ± 1.2 (n=16)

3 months

2.10 (0.93 to 3.27)

Yes

Tonge, 2014

PEAC

TAU

CARS

15-60

40.1 ± 5.4 (n=35)

38.7 ± 6.7 (n=35)

6 months

1.40 (-1.45 to 4.25)

No

Abbreviations: ADOS(-T) = autism diagnostic observation schedule (for toddlers); CARS = childhood autism rating scale; CI = confidence interval; CSS = calibrated severity score; DIR = developmental, individual-difference, relationship-based ;ESCS = early social communication scales; ESDM = early start Denver model; IJA = initiating joint attention; MD = mean difference; PEI = psychoeducational intervention; PRT = pivotal response treatment; RJA = responding to joint attention; SD = standard deviation; SRS = social responsiveness scale; TAU = treatment as usual; VIPP-Auti = Video-feedback intervention to promote positive parenting adapted to autism.

* Risk ratio (95%CI) is presented 

2. Adaptive behavior

Four studies reported on the outcome measure adaptive behavior, assessed using the Vineland Adaptive Behavior Scales (VABS) interview edition (Dawson, 2010; Estes, 2015; Tonge, 2014) or the VABS-II survey (interview) form (Rogers, 2012). All studies reported a VABS composite score, except for Tonge (2014) who presented scores for the individual subscales (communication, daily living skills, social and motor skills) only. Higher scores represent better functioning for the activities listed in each domain.

 

Early behavioral interventions

Dawson (2010) reported a mean (SD) VABS composite score of 69.5 (5.7) for the ESDM group (n=24) and 69.9 (7.3) for the assess-and-monitor group (n=24). Mean difference was -0.40 (95%CI -4.11 to 3.31) in favor of the assess-and-monitor group. This difference was not considered clinically relevant.

 

Estes (2015) reported a mean (SD) VABS composite score of 81.4 (17.3) for the ESDM group (n=17) and 72.1 (13.9) for the assess-and-monitor group (n=16). Mean difference was 9.35 (95%CI -1.30 to 20.00) in favor of the ESDM group. This difference was considered clinically relevant.

 

Parent-child interaction early interventions

Tonge (2014) reported mean (SD) scores for all VABS subscales. For the communication subscale, the authors reported a mean (SD) score of 58.0 (15.7) for the PEAC group (n=34) and 69.5 (24.0) for the TAU group (n=34). Mean difference was -11.50 (95%CI -21.14 to -1.86) in favor of the TAU group. This difference was considered clinically relevant. For the daily living subscale, mean (SD) scores of 57.8 (14.0) for the PEAC group and 60.1 (18.6) for the TAU group were presented. Mean difference was -2.30 (95%CI -10.13 to 5.53) in favor of the TAU group. This difference was not considered clinically relevant. For the social subscale, the authors reported a mean (SD) score of 63.0 (15.5) for the PEAC group and 67.4 (16.7) for the TAU group. Mean difference was (95%CI -4.40 (95%CI -12.06 to 3.26) in favor of TAU. This difference was not considered clinically relevant. For the motor subscale, mean (SD) scores of 63.1 (15.6) for the PEAC group and 68.3 (17.1) for the TAU group were presented. Mean difference was -3.49 (95%CI -7.44 to 0.45) in favor of TAU. This difference was not considered clinically relevant.

 

Rogers (2012) reported a mean (SD) VABS composite score of 77.4 (9.6) for the P-ESDM group (n=41) and 80.3 (11.3) for the TAU group (n=40). Mean difference was -2.90 (95%CI -7.48 to 1.68) in favor of the TAU group. This difference was not considered clinically relevant.

 

3. Emotion regulation

Early behavioral interventions

No studies on early behavioral interventions reported on emotion regulation.

 

Parent-child interaction early interventions

One study reported about emotion regulation, assessed using the Functional Emotional Assessment Scale (FEAS) (Pajareya, 2011). Higher scores indicate better emotional functioning. At baseline, they reported a mean FEAS (SD) score of 24.4 (12.7) for the developmental, individual-difference, relationship-based (DIR)/Floortime parent training group and 23.5 (12.6) for the TAU group. After three months of follow-up, the authors reported a mean change (SD) in FEAS score of 7.0 (6.3) in the parent training group (n=15) and 1.9 (6.1) in the TAU group (n=16). Mean difference was 5.10 (95%CI 0.73 to 9.47) in favor of DIR/Floortime parent training. This difference was considered clinically relevant.

 

4. Global functioning

One study reported on the outcome measure global functioning, assessed using the Clinical Global Impression‑Improvement (CGI-I) scale (Van den Berk-Smeekens, 2021). The CGI-I was rated on a 7-point scale, in which lower scores indicate improvement in global functioning.

 

Early behavioral interventions

Van den Berk-Smeekens (2021) reported on global functioning after 3 months of follow-up. The authors reported a mean (SD) CGI-I score of 2.21 (1.06) in the PRT group (n=25) and 3.10 (1.09) in the TAU group (n=23). Mean difference was -0.89 (95%CI -1.50 to -0.28) in favor of PRT. This difference was not considered clinically relevant.

 

Parent-child interaction early interventions

No studies on parent-child interaction early interventions reported on global functioning.

 

5. Patient satisfaction

Early behavioral interventions

No studies on early behavioral interventions reported on patient satisfaction.

 

Parent-child interaction early interventions

Three studies reported on patient satisfaction (Poslawsky, 2015; Nefdt, 2010; Tellegen, 2014).

 

Poslawsky (2015) reported on parental treatment satisfaction, assessed using the client satisfaction questionnaire (CSQ-8). The CSQ-8 contains eight items scored on a Likert scale ranging from ‘1 = quite dissatisfied’ to ‘4 = very satisfied’. At follow-up, the authors reported a mean (SD) CSQ-8 score of 24.6 (4.5) for the group receiving VIPP-Auti (n=40) and 25.4 (4.7) for the usual care group (n=36). Mean difference was -0.80 (95%CI -2.87 to 1.27) in favor of usual care. This difference was not considered clinically relevant.

 

Nefdt (2010) reported on patient satisfaction in the intervention group, assessed by using the 5-point one-page self-directed learning program (SDLP) satisfaction questionnaire (range 1-5 per element, with higher scores indicating better satisfaction). The authors reported that all parents found the intervention easy to understand (mean [SD] score = 4.77 [0.43]) as well as useful and informative (mean [SD] score = 4.62 [0.50]). The parents indicated that the intervention changed the way they interacted with their child (mean [SD] score = 4.46 [0.52]) and that they would recommend the program to others (mean [SD] score = 4.54 [0.52]). The majority of parents (78.6%) reported that their child was trying to communicate more (mean [SD] score = 3.85 [0.99]), and the majority of parents (71.4%) reported that they enjoyed doing PRT with their child (mean [SD] score = 3.77 [0.60]). Patient satisfaction was not assessed in the control group, resulting in the inability to calculate effect measures. For this reason, these results were not GRADE-evaluated.

 

Tellegen (2014) reported on patient satisfaction in the intervention group by using the CSQ. Authors reported that satisfaction ratings ranged from 47 to 91 with a high total average (SD) CSQ score of 72.67 (12.08). Patient satisfaction was not assessed in the control group, resulting in the inability to calculate effect measures. For this reason, these results were not GRADE-evaluated.

 

Level of evidence of the literature

1. Social communication

The level of evidence regarding the effect of early behavioral interventions on social communication was downgraded by three levels to very low because of lack of blinding combined with a subjective outcome and other study limitations (risk of bias: -1), conflicting results (inconsistency: -1), heterogeneity in outcome reporting and variety in the comparison groups (indirectness: -1).

 

The level of evidence regarding the effect of parent-child interaction early interventions on social communication was downgraded by three levels to very low because of lack of blinding combined with a subjective outcome and other study limitations (risk of bias: -1), conflicting results (inconsistency: -1), heterogeneity in outcome reporting (indirectness: -1).

 

2. Adaptive behavior

The level of evidence regarding the effect of early behavioral interventions on adaptive behavior was downgraded by three levels to very low because of lack of blinding combined with a subjective outcome and other study limitations (risk of bias: -1), conflicting results (inconsistency: -1), and the low number of included patients (imprecision: -1).

 

The level of evidence regarding the effect of parent-child interaction early interventions on adaptive behavior was downgraded by three levels to very low because of lack of blinding combined with a subjective outcome and other study limitations (risk of bias: -1), the low number of included patients, and the confidence interval crosses the border of clinical relevance (imprecision: -2).

 

3. Emotion regulation

None of the studies reported on the effect of early behavioral interventions on emotion regulation and could therefore not be graded.

 

The level of evidence regarding the effect of parent-child interaction early interventions on emotion regulation was downgraded by three levels to very low because of lack of blinding combined with a subjective outcome and other study limitations (risk of bias: -1), the low number of included patients, and the confidence interval crosses the border of clinical relevance (imprecision: -2).

 

4. Global functioning

The level of evidence regarding the effect of early behavioral interventions on global functioning was downgraded by two levels to low because of lack of blinding combined with a subjective outcome and other study limitations (risk of bias: -1) and the low number of included patients (imprecision: -1).

 

None of the studies reported on the effect of parent-child interaction interventions on global functioning and could therefore not be graded.

 

5. Patient satisfaction

None of the studies reported on the effect of early behavioral interventions on patient satisfaction and could therefore not be graded.

 

The level of evidence regarding the effect of parent-child interaction early interventions on patient satisfaction was downgraded by three levels to very low because of lack of blinding combined with a subjective outcome and other study limitations (risk of bias: -1), the low number of included patients, and the confidence interval crosses the border of clinical relevance (imprecision: -2).

A systematic review of the literature was performed to answer the following question: What are the favorable and unfavorable effects of early interventions compared with standard care or watchful waiting for children with autism spectrum disorder (ASD)?

P:

Children aged 0 to 6 with ASD

I:

1. Early behavioral interventions (e.g., Applied Behavioral Analysis intervention(s),

Pivotal Response Training (PRT), Jasper, Early Start Denver Model (ESDM), Discrete Trial Treatment)

2. Parent-child early interventions (e.g., FloorPlay, Video-feedback Intervention to promote Positive Parenting adapted to Autism (VIPP-Auti), Floortime, Play Project, Son-Rise/Option approach, Hanen approach)
C:

Standard care, TAU, waitlist

O:

Social communication, adaptive behavior, emotion regulation, global functioning and patient satisfaction

Relevant outcome measures

The guideline development group considered social communication as critical outcome measures for decision making and adaptive behavior, emotion regulation, global functioning, patient satisfaction as important outcome measures for decision making. These outcome measures were chosen as these are related to the primary aims of the interventions.

 

The working group defined the outcome measures as follows:

  • Social communication: instruments measuring initiations of joint attention, joint engagement, joint attention, joint requesting, initiations, communication, child responsiveness and involvement (e.g., SRS, DPICS, ADOS)
  • Adaptive behavior: Vineland adaptive behavior scale (VABS) total score

The working group did not define the other outcome measures emotion regulation, global functioning and patient satisfaction but used the definitions used in the studies.

 

The working group defined a 25% difference for dichotomous outcomes (0.8 ≥ RR ≥ 1.25), and 0.5 SD (baseline) or -0.5 > SMD > 0.5 for continuous outcomes as a minimal clinically (patient) important difference.

 

Search and select (Methods)

The databases Medline (via OVID) and Embase (via Embase.com) were searched with relevant search terms from 2010 until 16 March 2023. The detailed search strategy is depicted under the tab Methods. The systematic literature search resulted in 297 hits. Studies were selected based on the following criteria:

  • Systematic reviews (searched in at least two databases, detailed search strategy, risk of bias assessment and results of individual studies available), or randomized controlled trials;
  • Studies including ≥20 (ten per arm) patients;
  • Full-text English language publication; and
  • Studies according to the PICO.

A total of 84 studies were initially selected based on title and abstract screening. After reading the full text, 77 studies were excluded (see the table with reasons for exclusion under the tab Methods), and seven studies were included.

 

Results

One systematic review and six RCTs were included in the analysis of the literature. Important study characteristics and results are summarized in the evidence tables. The assessment of the risk of bias is summarized in the risk of bias tables.

  1. Dawson G, Rogers S, Munson J, Smith M, Winter J, Greenson J, Donaldson A, Varley J. Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model. Pediatrics. 2010 Jan;125(1):e17-23. doi: 10.1542/peds.2009-0958. Epub 2009 Nov 30. PMID: 19948568; PMCID: PMC4951085.
  2. Deb SS, Retzer A, Roy M, Acharya R, Limbu B, Roy A. The effectiveness of parent training for children with autism spectrum disorder: a systematic review and meta-analyses. BMC Psychiatry. 2020 Dec 7;20(1):583. doi: 10.1186/s12888-020-02973-7. PMID: 33287762; PMCID: PMC7720449.
  3. Estes A, Munson J, Rogers SJ, Greenson J, Winter J, Dawson G. Long-Term Outcomes of Early Intervention in 6-Year-Old Children With Autism Spectrum Disorder. J Am Acad Child Adolesc Psychiatry. 2015 Jul;54(7):580-7. doi: 10.1016/j.jaac.2015.04.005. Epub 2015 Apr 28. PMID: 26088663; PMCID: PMC4475272.
  4. Ginn NC, Clionsky LN, Eyberg SM, Warner-Metzger C, Abner JP. Child-Directed Interaction Training for Young Children With Autism Spectrum Disorders: Parent and Child Outcomes. J Clin Child Adolesc Psychol. 2017 Jan-Feb;46(1):101-109. doi: 10.1080/15374416.2015.1015135. Epub 2015 Mar 18. PMID: 25785646.
  5. Kasari C, Gulsrud A, Paparella T, Hellemann G, Berry K. Randomized comparative efficacy study of parent-mediated interventions for toddlers with autism. J Consult Clin Psychol. 2015 Jun;83(3):554-63. doi: 10.1037/a0039080. Epub 2015 Mar 30. PMID: 25822242; PMCID: PMC4755315.
  6. Nederlands Autisme Register. Ervaringen met ABA-behandelingen voor autisme. https://nar.vu.nl/actueel_onderzoek/aba-onderzoek.
  7. Nefdt N, Koegel R, Singer G, Gerber M. The use of a self-directed learning program to provide introductory training in pivotal response treatment to parents of children with autism. J Posit Behav Interv. 2010 Jan;12:23-32. doi: 10.1177/1098300709334796.
  8. Oosterling I, Visser J, Swinkels S, Rommelse N, Donders R, Woudenberg T, Roos S, van der Gaag RJ, Buitelaar J. Randomized controlled trial of the focus parent training for toddlers with autism: 1-year outcome. J Autism Dev Disord. 2010 Dec;40(12):1447-58. doi: 10.1007/s10803-010-1004-0. PMID: 20440639; PMCID: PMC2980624.
  9. Pajareya K, Nopmaneejumruslers K. A pilot randomized controlled trial of DIR/Floortime™ parent training intervention for pre-school children with autistic spectrum disorders. Autism. 2011 Sep;15(5):563-77. doi: 10.1177/1362361310386502. Epub 2011 Jun 13. PMID: 21690083.
  10. Poslawsky IE, Naber FB, Bakermans-Kranenburg MJ, van Daalen E, van Engeland H, van IJzendoorn MH. Video-feedback Intervention to promote Positive Parenting adapted to Autism (VIPP-AUTI): A randomized controlled trial. Autism. 2015 Jul;19(5):588-603. doi: 10.1177/1362361314537124. Epub 2014 Jun 11. PMID: 24919961.
  11. Rogers SJ, Estes A, Lord C, Vismara L, Winter J, Fitzpatrick A, Guo M, Dawson G. Effects of a brief Early Start Denver model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: a randomized controlled trial. J Am Acad Child Adolesc Psychiatry. 2012 Oct;51(10):1052-65. doi: 10.1016/j.jaac.2012.08.003. Epub 2012 Aug 28. PMID: 23021480; PMCID: PMC3487718.
  12. Tellegen CL, Sanders MR. A randomized controlled trial evaluating a brief parenting program with children with autism spectrum disorders. J Consult Clin Psychol. 2014 Dec;82(6):1193-200. doi: 10.1037/a0037246. Epub 2014 Jun 30. PMID: 24979315.
  13. Tonge B, Brereton A, Kiomall M, Mackinnon A, Rinehart NJ. A randomised group comparison controlled trial of 'preschoolers with autism': a parent education and skills training intervention for young children with autistic disorder. Autism. 2014 Feb;18(2):166-77. doi: 10.1177/1362361312458186. Epub 2012 Sep 17. PMID: 22987897.
  14. van den Berk-Smeekens I, de Korte MWP, van Dongen-Boomsma M, Oosterling IJ, den Boer JC, Barakova EI, Lourens T, Glennon JC, Staal WG, Buitelaar JK. Pivotal Response Treatment with and without robot-assistance for children with autism: a randomized controlled trial. Eur Child Adolesc Psychiatry. 2022 Dec;31(12):1871-1883. doi: 10.1007/s00787-021-01804-8. Epub 2021 Jun 3. PMID: 34106357; PMCID: PMC9663375.

Risk of bias tables

Study reference

 

Was the allocation sequence adequately generated?

 

Was the allocation adequately concealed?

Blinding: Was knowledge of the allocated

interventions adequately prevented? Were patients/healthcare providers/data collectors/outcome assessors/data analysts blinded?

Was loss to follow-up (missing outcome data) infrequent?

Are reports of the study free of selective outcome reporting?

Was the study apparently free of other problems that could put it at a risk of bias?

 

Overall risk of bias

Dawson, 2010

Probably yes

 

Reason: Randomization was conducted by using random permuted blocks of 4.

Unclear

Definitely no

 

Reason: Participants and personnel were not blinded, open-label trial.

Definitely yes

 

Reason: Zero participants were lost to follow-up in the intervention group compared to four (17%) participants in the control group.

Definitely yes

 

Reason: Trial is registered at ClinicalTrials.gov (NCT00090415). Outcomes are reported as prespecified. 

Definitely yes

 

Reason: No other problems noted.

HIGH

Estes, 2015

Probably yes 

 

Reason: Randomization was conducted by using random permuted blocks of 4.

Unclear

Definitely no

 

Reason: Participants were not blinded.

Definitely yes

 

Reason: Three participants from both groups were lost to follow-up at age-6 assessment.

Probably yes

 

Reason: Same trial as Dawson (2010), age-6 assessment was not prespecified in the protocol. But there is no reason to doubt that this report is free of selective outcome reporting.

Definitely yes

 

Reason: No other problems noted.

HIGH

Kasari, 2015

Definitely yes

 

Reason: Randomization was conducted by using a random numbers list.

Unclear

 

Definitely no

 

Reason: Participants were not blinded, but some personnel was.

Probably no

 

Reason: Three (7%) participants were lost to follow-up in the intervention group compared to seven (16%) participants in the control group.

Definitely yes

 

Reason: Trial is registered at ClinicalTrials.gov (NCT00999778). Outcomes are reported as prespecified. 

Probably no

 

Reason: Kasari is the developer of the intervention that was investigated (JASPER training).

HIGH

Van den Berk-Smeekens, 2021

Probably yes

 

Reason: Participants were randomly assigned in a 1:1 ratio.

Unclear

Definitely no

 

Reason: Open label trial, no blinding.

Probably no

 

Reason: Two (7%) participants from intervention group were lost to follow-up compared to six (21%) participants in the control group.

Definitely yes

 

Reason: Trial is registered (NL4487/NTR4712). Outcomes are reported as prespecified.

Definitely yes

 

Reason: No other problems noted.

HIGH

Poslawsky, 2015

Definitely no

 

Reason: Randomization was conducted by using computer-generated tables, indicated by number.

Unclear

Definitely no

 

Reason: No blinding reported.

Definitely yes

 

Reason: Zero participants were lost to follow-up in the intervention group compared to two (5%) participants in the control group.

Probably yes

 

Reason: Protocol is mentioned in the article, but not available. No reason to doubt that the study is free of selective outcome reporting.

Probably no

 

Reason: Poslawsky is the developer of the intervention that was investigated (VIPP-Auti).

HIGH

Ginn, 2017

Probably yes

 

Reason: A stratified randomization approach was used.

Unclear

Definitely no

 

Reason: No blinding reported.

Definitely yes

 

Reason: Four (21%) participants were lost to follow-up in the intervention group compared to five (25%)  participants in the control group.

Probably yes

 

Reason: Nothing reported about study protocol or registration.

Definitely yes

 

Reason: No other problems noted.

HIGH

Deb, 2020 (obtained from systematic review)

    - Nefdt, 2010

Unclear 

Unclear

Definitely no

Definitely yes

Definitely yes

Definitely yes

HIGH

    - Pajareya, 2011

Definitely yes

Unclear

Definitely no

Definitely yes

Definitely yes

Definitely yes

HIGH

    - Rogers, 2012

Definitely yes

Unclear

Definitely no

Definitely yes

Definitely yes

Definitely yes

HIGH

    - Tonge, 2014

Definitely yes

Unclear

Definitely no

Definitely yes

Definitely yes

Definitely yes

HIGH

    - Tellegen, 2014

Definitely yes

Unclear

Definitely no

Definitely yes

Definitely yes

Definitely yes

HIGH

    - Oosterling, 2010

Definitely yes

Unclear

Definitely no

Definitely yes

Definitely yes

Definitely yes

HIGH

Table of excluded studies

Reference

Reason for exclusion

Beaudoin AJ, Sébire G, Couture M. Parent training interventions for toddlers with autism spectrum disorder. Autism Res Treat. 2014;2014:839890. doi: 10.1155/2014/839890. Epub 2014 May 7. PMID: 24895534; PMCID: PMC4033505.

Less recent and complete compared to Deb (2020), and no risk of bias assessment conducted.

Caron V, Bérubé A, Paquet A. Implementation evaluation of early intensive behavioral intervention programs for children with autism spectrum disorders: A systematic review of studies in the last decade. Eval Program Plann. 2017 Jun;62:1-8. doi: 10.1016/j.evalprogplan.2017.01.004. Epub 2017 Jan 22. PMID: 28189054.

Wrong aim (documenting program implementation components).

Daniolou S, Pandis N, Znoj H. The Efficacy of Early Interventions for Children with Autism Spectrum Disorders: A Systematic Review and Meta-Analysis. J Clin Med. 2022 Aug 30;11(17):5100. doi: 10.3390/jcm11175100. PMID: 36079029; PMCID: PMC9457367.

No description which studies included participants at risk of ASD.

Dijkstra-de Neijs L, Tisseur C, Kluwen LA, van Berckelaer-Onnes IA, Swaab H, Ester WA. Effectivity of Play-Based Interventions in Children with Autism Spectrum Disorder and Their Parents: A Systematic Review. J Autism Dev Disord. 2023 Apr;53(4):1588-1617. doi: 10.1007/s10803-021-05357-2. Epub 2021 Dec 2. PMID: 34853960.

Unclear which data is derived from which individual study, comparison is not reported.

Eckes T, Buhlmann U, Holling HD, Möllmann A. Comprehensive ABA-based interventions in the treatment of children with autism spectrum disorder - a meta-analysis. BMC Psychiatry. 2023 Mar 2;23(1):133. doi: 10.1186/s12888-022-04412-1. PMID: 36864429; PMCID: PMC9983163.

Included only one suitable RCT (Shawler, 2016), but this study reported only one outcome (intellectual functioning).

Forbes HJ, Travers JC, Vickers Johnson J. A Systematic Review of Linguistic and Verbal Behavior Outcomes of Pivotal Response Treatment. J Autism Dev Disord. 2020 Mar;50(3):766-778. doi: 10.1007/s10803-019-04307-3. PMID: 31768719.

Wrong aim (examine which communication outcomes are reported in PRT research).

Franz L, Goodwin CD, Rieder A, Matheis M, Damiano DL. Early intervention for very young children with or at high likelihood for autism spectrum disorder: An overview of reviews. Dev Med Child Neurol. 2022 Sep;64(9):1063-1076. doi: 10.1111/dmcn.15258. Epub 2022 May 18. PMID: 35582893; PMCID: PMC9339513.

Wrong publication type (overview of systematic reviews).

Fuller EA, Kaiser AP. The Effects of Early Intervention on Social Communication Outcomes for Children with Autism Spectrum Disorder: A Meta-analysis. J Autism Dev Disord. 2020 May;50(5):1683-1700. doi: 10.1007/s10803-019-03927-z. PMID: 30805766; PMCID: PMC7350882.

Included two suitable RCTs (Rogers, 2019; Dawson, 2010), but these studies are included in Deb (2020) as well or found in our search and therefore analyzed individually. No appropriate risk of bias assessment of included studies conducted.

Fuller EA, Oliver K, Vejnoska SF, Rogers SJ. The Effects of the Early Start Denver Model for Children with Autism Spectrum Disorder: A Meta-Analysis. Brain Sci. 2020 Jun 12;10(6):368. doi: 10.3390/brainsci10060368. PMID: 32545615; PMCID: PMC7349854.

Comparison treatment of individual studies is not reported, not specifically described which studies included participants at risk of ASD.

Geoffray MM, Thevenet M, Georgieff N. News in early intervention in autism. Psychiatr Danub. 2016 Sep;28(Suppl-1):66-70. PMID: 27663808.

Wrong publication type (literature review).

Kovshoff H, Hastings RP, Remington B. Two-year outcomes for children with autism after the cessation of early intensive behavioral intervention. Behav Modif. 2011 Sep;35(5):427-50. doi: 10.1177/0145445511405513. Epub 2011 May 17. PMID: 21586502.

Wrong publication type (literature review).

Oono IP, Honey EJ, McConachie H. Parent-mediated early intervention for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2013 Apr 30;(4):CD009774. doi: 10.1002/14651858.CD009774.pub2. PMID: 23633377.

Wrong publication type (commentary).

Pacia C, Holloway J, Gunning C, Lee H. A Systematic Review of Family-Mediated Social Communication Interventions for Young Children with Autism. Rev J Autism Dev Disord. 2022;9(2):208-234. doi: 10.1007/s40489-021-00249-8. Epub 2021 Apr 1. PMID: 33821200; PMCID: PMC8012416.

Wrong comparison (no comparison/comparison other than usual care/TAU/waitlist).

Parr J. Autism. BMJ Clin Evid. 2010 Jan 7;2010:0322. PMID: 21729335; PMCID: PMC2907623.

Wrong publication type (no results published/reported).

Peters-Scheffer N, Didden R, Korzilius H, Sturmey P. A meta-analytic study on the effectiveness of comprehensive ABA-based early intervention programs for children with Autism Spectrum Disorders. Res Autism Spectr Disord. 2011;5(1):60-69. doi: 10.106/j.rasd.2010.03.011.

All included studies are published prior to 2010.

Reichow B, Hume K, Barton EE, Boyd BA. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2018 May 9;5(5):CD009260. doi: 10.1002/14651858.CD009260.pub3. PMID: 29742275; PMCID: PMC6494600.

Included only one suitable study (Howard, 2014), which is a non-randomized trial.

Rodgers M, Marshall D, Simmonds M, Le Couteur A, Biswas M, Wright K, Rai D, Palmer S, Stewart L, Hodgson R. Interventions based on early intensive applied behaviour analysis for autistic children: a systematic review and cost-effectiveness analysis. Health Technol Assess. 2020 Jul;24(35):1-306. doi: 10.3310/hta24350. PMID: 32686642; PMCID: PMC7397479.

Included only one suitable study (Dawson, 2010) which was found in our search as well and therefore analyzed individually.

Rojas-Torres LP, Alonso-Esteban Y, Alcantud-Marín F. Early Intervention with Parents of Children with Autism Spectrum Disorders: A Review of Programs. Children (Basel). 2020 Dec 15;7(12):294. doi: 10.3390/children7120294. PMID: 33333900; PMCID: PMC7765314.

PICO not clearly predefined, no clear description of included and excluded studies.

Ryberg KH. Evidence for the Implementation of the Early Start Denver Model for Young Children With Autism Spectrum Disorder. J Am Psychiatr Nurses Assoc. 2015 Sep-Oct;21(5):327-37. doi: 10.1177/1078390315608165. PMID: 26511434.

Wrong outcomes.

Sandbank M, Bottema-Beutel K, Crowley S, Cassidy M, Dunham K, Feldman JI, Crank J, Albarran SA, Raj S, Mahbub P, Woynaroski TG. Project AIM: Autism intervention meta-analysis for studies of young children. Psychol Bull. 2020 Jan;146(1):1-29. doi: 10.1037/bul0000215. Epub 2019 Nov 25. PMID: 31763860; PMCID: PMC8783568.

Excluded studies including reasons for exclusion not specifically reported, the majority of included participants had a diagnosis of ASD but not all.

Shi B, Wu W, Dai M, Zeng J, Luo J, Cai L, Wan B, Jing J. Cognitive, Language, and Behavioral Outcomes in Children With Autism Spectrum Disorders Exposed to Early Comprehensive Treatment Models: A Meta-Analysis and Meta-Regression. Front Psychiatry. 2021 Jul 26;12:691148. doi: 10.3389/fpsyt.2021.691148. PMID: 34381389; PMCID: PMC8350444.

Comparison treatment of individual studies is not reported.

Waddington H, Reynolds JE, Macaskill E, Curtis S, Taylor LJ, Whitehouse AJ. The effects of JASPER intervention for children with autism spectrum disorder: A systematic review. Autism. 2021 Nov;25(8):2370-2385. doi: 10.1177/13623613211019162. Epub 2021 Aug 4. PMID: 34348479.

The majority of included participants had a diagnosis of ASD but not all.

Wang Z, Loh SC, Tian J, Chen QJ. A meta-analysis of the effect of the Early Start Denver Model in children with autism spectrum disorder. Int J Dev Disabil. 2021 Jan 6;68(5):587-597. doi: 10.1080/20473869.2020.1870419. PMID: 36210899; PMCID: PMC9542560.

Comparison treatment of individual studies is not reported.

Warren Z, McPheeters ML, Sathe N, Foss-Feig JH, Glasser A, Veenstra-Vanderweele J. A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics. 2011 May;127(5):e1303-11. doi: 10.1542/peds.2011-0426. Epub 2011 Apr 4. PMID: 21464190.

No description of relevant characteristics of included studies.

Yu Q, Li E, Li L, Liang W. Efficacy of Interventions Based on Applied Behavior Analysis for Autism Spectrum Disorder: A Meta-Analysis. Psychiatry Investig. 2020 May;17(5):432-443. doi: 10.30773/pi.2019.0229. Epub 2020 May 8. PMID: 32375461; PMCID: PMC7265021.

Comparison treatment of individual studies is not reported.

Allen K, Harrington J, Quetsch LB, Masse J, Cooke C, Paulson JF. Parent-Child Interaction Therapy for Children with Disruptive Behaviors and Autism: A Randomized Clinical Trial. J Autism Dev Disord. 2023 Jan;53(1):390-404. doi: 10.1007/s10803-022-05428-y. Epub 2022 Jan 25. PMID: 35076832; PMCID: PMC9889513.

Wrong intervention (PCIT).

Barrett AC, Vernon TW, McGarry ES, Holden AN, Bradshaw J, Ko JA, Horowitz EJ, German TC. Social responsiveness and language use associated with an enhanced PRT approach for young children with ASD: Results from a pilot RCT of the PRISM model. Res Autism Spectr Disord. 2020 March;71:101497. doi: 10.1016/j.rasd.2019.101497.

Pilot study; n < 10 participant in control treatment arm.

Carter AS, Messinger DS, Stone WL, Celimli S, Nahmias AS, Yoder P. A randomized controlled trial of Hanen's 'More Than Words' in toddlers with early autism symptoms. J Child Psychol Psychiatry. 2011 Jul;52(7):741-52. doi: 10.1111/j.1469-7610.2011.02395.x. Epub 2011 Mar 22. PMID: 21418212; PMCID: PMC4783130.

Not included in Deb (2020) because they excluded studies where children were aged < 1 year.

Casenhiser DM, Binns A, McGill F, Morderer O, Shanker SG. Measuring and supporting language function for children with autism: evidence from a randomized control trial of a social-interaction-based therapy. J Autism Dev Disord. 2015 Mar;45(3):846-57. doi: 10.1007/s10803-014-2242-3. PMID: 25234481.

Wrong intervention (MEHRIT) and outcome (language).

Chang YC, Shih W, Landa R, Kaiser A, Kasari C. Symbolic Play in School-Aged Minimally Verbal Children with Autism Spectrum Disorder. J Autism Dev Disord. 2018 May;48(5):1436-1445. doi: 10.1007/s10803-017-3388-6. PMID: 29170936.

Wrong comparison (JASP-EMT versus JASP-EMT + AAC).

Chang YC, Shire SY, Shih W, Gelfand C, Kasari C. Preschool Deployment of Evidence-Based Social Communication Intervention: JASPER in the Classroom. J Autism Dev Disord. 2016 Jun;46(6):2211-2223. doi: 10.1007/s10803-016-2752-2. PMID: 26936161.

Intervention is provided by teaching assistants and not by the parents.

Cidav Z, Munson J, Estes A, Dawson G, Rogers S, Mandell D. Cost Offset Associated With Early Start Denver Model for Children With Autism. J Am Acad Child Adolesc Psychiatry. 2017 Sep;56(9):777-783. doi: 10.1016/j.jaac.2017.06.007. Epub 2017 Jul 4. PMID: 28838582; PMCID: PMC7007927.

Wrong outcomes (health care service use and costs).

Dai YG, Thomas RP, Brennan L, Luu ML, Hughes-Lika J, Reilly M, Moreno P, Obe B, Ahmed KB, Berry LN, Goin-Kochel RP, Helt MS, Barton ML, Dumont-Mathieu T, Robins DL, Fein DA. An initial trial of OPT-In-Early: An online training program for caregivers of autistic children. Autism. 2023 Aug;27(6):1601-1615. doi: 10.1177/13623613221142408. Epub 2022 Dec 15. PMID: 36519775; PMCID: PMC10267291.

Wrong intervention (OPT-In-Early online program which is not offered in NL).

Dawson G, Jones EJ, Merkle K, Venema K, Lowy R, Faja S, Kamara D, Murias M, Greenson J, Winter J, Smith M, Rogers SJ, Webb SJ. Early behavioral intervention is associated with normalized brain activity in young children with autism. J Am Acad Child Adolesc Psychiatry. 2012 Nov;51(11):1150-9. doi: 10.1016/j.jaac.2012.08.018. PMID: 23101741; PMCID: PMC3607427.

Post-hoc analysis of Dawson (2010), but with wrong outcomes (brain activity/EEG).

de Korte MWP, van den Berk-Smeekens I, Buitelaar JK, Staal WG, van Dongen-Boomsma M. Pivotal Response Treatment for School-Aged Children and Adolescents with Autism Spectrum Disorder: A Randomized Controlled Trial. J Autism Dev Disord. 2021 Dec;51(12):4506-4519. doi: 10.1007/s10803-021-04886-0. Epub 2021 Feb 9. PMID: 33559019.

Wrong population (age 6-15 years)

Eikeseth S, Klintwall L, Karlsson P. Outcome for children with autism receiving early and intensive behavioral intervention in mainstream preschool and kindergarten settings. Res Autism Spectr Disord. April-June 2012;6(2):829-835. doi: 10.1016/j.rasd.2011.09.002.

Wrong comparison (eclectic-special education-teaching to teach communication, play, social and self-help skilss).

Eldevik S, Jahr E, Eikeseth S, Hastings RP, Hughes CJ. Cognitive and adaptive behavior outcomes of behavioral intervention for young children with intellectual disability. Behav Modif. 2010 Jan;34(1):16-34. doi: 10.1177/0145445509351961. Erratum in: Behav Modif. 2010 Mar;34(2):191-2. PMID: 20051523.

Wrong population (children with intellectual disabilites without a record of a diagnosis of autism).

Estes A, Vismara L, Mercado C, Fitzpatrick A, Elder L, Greenson J, Lord C, Munson J, Winter J, Young G, Dawson G, Rogers S. The impact of parent-delivered intervention on parents of very young children with autism. J Autism Dev Disord. 2014 Feb;44(2):353-65. doi: 10.1007/s10803-013-1874-z. PMID: 23838727; PMCID: PMC3888483.

Wrong outcomes (parenting stress, caregiver sense of competence, intervention hours).

Faroghizadeh K, Ziaian T. Effectiveness of applied behavioral analysis method on autism symptoms. Int J Pham Res. Jan-Mar 2021;13(1):5710-5716. 

Wrong comparison (ABA based interventions were performed in both groups).

Flanagan HE, Perry A, Freeman NL. Effectiveness of large-scale community-based Intensive Behavioral Intervention: A waitlist comparison study exploring outcomes and predictors. Res Autism Spectr Disord. April-June 2012;6(2):673-682. doi: 10.1016/j.rasd.2011.09.011.

Non-randomized design.

Gengoux GW, Abrams DA, Schuck R, Millan ME, Libove R, Ardel CM, Phillips JM, Fox M, Frazier TW, Hardan AY. A Pivotal Response Treatment Package for Children With Autism Spectrum Disorder: An RCT. Pediatrics. 2019 Sep;144(3):e20190178. doi: 10.1542/peds.2019-0178. Epub 2019 Aug 6. PMID: 31387868; PMCID: PMC6856784.

Included in Deb (2020).

Goods KS, Ishijima E, Chang YC, Kasari C. Preschool based JASPER intervention in minimally verbal children with autism: pilot RCT. J Autism Dev Disord. 2013 May;43(5):1050-6. doi: 10.1007/s10803-012-1644-3. PMID: 22965298; PMCID: PMC4222903.

Pilot study; n < 10 participants in both treatment arms.

Green J, Charman T, McConachie H, Aldred C, Slonims V, Howlin P, Le Couteur A, Leadbitter K, Hudry K, Byford S, Barrett B, Temple K, Macdonald W, Pickles A; PACT Consortium. Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial. Lancet. 2010 Jun 19;375(9732):2152-60. doi: 10.1016/S0140-6736(10)60587-9. Epub 2010 May 20. PMID: 20494434; PMCID: PMC2890859.

Wrong intervention (PACT, which is not offered in NL).

Green J, Leadbitter K, Ellis C, Taylor L, Moore HL, Carruthers S, James K, Taylor C, Balabanovska M, Langhorne S, Aldred C, Slonims V, Grahame V, Parr J, Humphrey N, Howlin P, McConachie H, Le Couteur A, Charman T, Emsley R, Pickles A. An adapted social communication intervention at home and education to promote social communication change in children with severe autism: the PACT-G RCT. Southampton (UK): National Institute for Health and Care Research; 2022 May. PMID: 35605069.

Wrong intervention (PACT-G).

Gulsrud AC, Hellemann G, Shire S, Kasari C. Isolating active ingredients in a parent-mediated social communication intervention for toddlers with autism spectrum disorder. J Child Psychol Psychiatry. 2016 May;57(5):606-13. doi: 10.1111/jcpp.12481. Epub 2015 Nov 3. PMID: 26525461; PMCID: PMC8320675.

Wrong comparison (JASPER versus psychoeducational intervention).

Hardan AY, Gengoux GW, Berquist KL, Libove RA, Ardel CM, Phillips J, Frazier TW, Minjarez MB. A randomized controlled trial of Pivotal Response Treatment Group for parents of children with autism. J Child Psychol Psychiatry. 2015 Aug;56(8):884-92. doi: 10.1111/jcpp.12354. Epub 2014 Oct 27. PMID: 25346345.

Included in Deb (2020).

Ibañez LV, Kobak K, Swanson A, Wallace L, Warren Z, Stone WL. Enhancing interactions during daily routines: A randomized controlled trial of a web-based tutorial for parents of young children with ASD. Autism Res. 2018 Apr;11(4):667-678. doi: 10.1002/aur.1919. Epub 2018 Jan 7. PMID: 29316336; PMCID: PMC5903955.

Wrong intervention (enhancing interactions tutorial).

Kasari C, Lawton K, Shih W, Barker TV, Landa R, Lord C, Orlich F, King B, Wetherby A, Senturk D. Caregiver-mediated intervention for low-resourced preschoolers with autism: an RCT. Pediatrics. 2014 Jul;134(1):e72-9. doi: 10.1542/peds.2013-3229. PMID: 24958585; PMCID: PMC4531276.

Wrong comparison (caregiver-mediated module [CMM] versus caregiver education module [CEM]).

Li HH, Li CL, Gao D, Pan XY, DU L, Jia FY. [Preliminary application of Early Start Denver Model in children with autism spectrum disorder]. Zhongguo Dang Dai Er Ke Za Zhi. 2018 Oct;20(10):793-798. Chinese. doi: 10.7499/j.issn.1008-8830.2018.10.002. PMID: 30369351; PMCID: PMC7389043.

Wrong language (Chinese).

Malucelli ERS, Antoniuk SA, Carvalho NO. The effectiveness of early parental coaching in the autism spectrum disorder. J Pediatr (Rio J). 2021 Jul-Aug;97(4):453-458. doi: 10.1016/j.jped.2020.09.004. Epub 2020 Oct 15. PMID: 33069667; PMCID: PMC9432305.

n < 10 participants in both treatment arms.

Marino F, Chilà P, Failla C, Crimi I, Minutoli R, Puglisi A, Arnao AA, Tartarisco G, Ruta L, Vagni D, Pioggia G. Tele-Assisted Behavioral Intervention for Families with Children with Autism Spectrum Disorders: A Randomized Control Trial. Brain Sci. 2020 Sep 18;10(9):649. doi: 10.3390/brainsci10090649. PMID: 32961875; PMCID: PMC7563357.

Wrong comparison (ABA intervention with tele-assistance versus ABA intervention without tele-assistance).

McDaniel J, Yoder P, Crandall M, Millan ME, Ardel CM, Gengoux GW, Hardan AY. Effects of pivotal response treatment on reciprocal vocal contingency in a randomized controlled trial of children with autism spectrum disorder. Autism. 2020 Aug;24(6):1566-1571. doi: 10.1177/1362361320903138. Epub 2020 Feb 14. PMID: 32054315; PMCID: PMC7375927.

Wrong outcome (reciprocal vocal contingency); used data of Gengoux (2019) which is included in Deb (2020).

Mohammadzaheri F, Koegel LK, Rezaei M, Bakhshi E. A Randomized Clinical Trial Comparison Between Pivotal Response Treatment (PRT) and Adult-Driven Applied Behavior Analysis (ABA) Intervention on Disruptive Behaviors in Public School Children with Autism. J Autism Dev Disord. 2015 Sep;45(9):2899-907. doi: 10.1007/s10803-015-2451-4. PMID: 25953148; PMCID: PMC4554985.

Wrong comparison (ABA versus PRT).

Mohammadzaheri F, Koegel LK, Bakhshi E, Khosrowabadi R, Soleymani Z. The Effect of Teaching Initiations on the Communication of Children with Autism Spectrum Disorder: A Randomized Clinical Trial. J Autism Dev Disord. 2022 Jun;52(6):2598-2609. doi: 10.1007/s10803-021-05153-y. Epub 2021 Jul 23. PMID: 34296374.

The outcome measure social communication was reported, but only as correlations. No other outcome measures of interest were reported.

Mohammadzaheri F, Koegel LK, Soleymani Z, Khosrowabadi R, Bakhshi E. Neural correlates of enhancing question asking and initiations in children with autism spectrum disorders: A Randomized Clinical Trial. Soc Neurosci. 2022 Apr;17(2):181-192. doi: 10.1080/17470919.2022.2054858. Epub 2022 Mar 28. PMID: 35296214.

Wrong outcomes (EEG, power frequency bands).

Molnár C, Eldevik S. Verhaltenstherapeutische Intervention für Vorschulkinder mit Autismus [Behavioral intervention for preschool children with autism – outcome of parent-based Intervention]. Z Kinder Jugendpsychiatr Psychother. 2017;45(3):181-191. German. doi: 10.1024/1422-4917/a000469. Epub 2016 Sep 26. PMID: 28523969.

Wrong language (German).

Pajareya K, Nopmaneejumruslers K. A pilot randomized controlled trial of DIR/Floortime™ parent training intervention for pre-school children with autistic spectrum disorders. Autism. 2011 Sep;15(5):563-77. doi: 10.1177/1362361310386502. Epub 2011 Jun 13. PMID: 21690083.

Included in Deb (2020).

Panganiban JL, Shire SY, Williams J, Kasari C. Supporting peer engagement for low-income preschool students with autism spectrum disorder during academic instruction: A pilot randomized trial. Autism. 2022 Nov;26(8):2175-2187. doi: 10.1177/13623613221085339. Epub 2022 Apr 14. PMID: 35420044; PMCID: PMC9596950.

Intervention is provided by teaching assistants and not by the parents.

Qu L, Chen H, Miller H, Miller A, Colombi C, Chen W, Ulrich DA. Assessing the Satisfaction and Acceptability of an Online Parent Coaching Intervention: A Mixed-Methods Approach. Front Psychol. 2022 Jul 28;13:859145. doi: 10.3389/fpsyg.2022.859145. PMID: 35967644; PMCID: PMC9367480.

Wrong comparison (web+group therapy versus self-directed therapy: involves the same program).

Rahman A, Divan G, Hamdani SU, Vajaratkar V, Taylor C, Leadbitter K, Aldred C, Minhas A, Cardozo P, Emsley R, Patel V, Green J. Effectiveness of the parent-mediated intervention for children with autism spectrum disorder in south Asia in India and Pakistan (PASS): a randomised controlled trial. Lancet Psychiatry. 2016 Feb;3(2):128-36. doi: 10.1016/S2215-0366(15)00388-0. Epub 2015 Dec 17. PMID: 26704571.

Wrong intervention (PASS, not offered in NL).

Roberts MY, Stern YS, Grauzer J, Nietfeld J, Thompson S, Jones M, Kaat AJ, Kaiser AP. Teaching Caregivers to Support Social Communication: Results From a Randomized Clinical Trial of Autistic Toddlers. Am J Speech Lang Pathol. 2023 Jan 11;32(1):115-127. doi: 10.1044/2022_AJSLP-22-00133. Epub 2022 Dec 16. PMID: 36525627; PMCID: PMC10023141.

Wrong comparator (positive behavior support).

Rogers SJ, Estes A, Lord C, Munson J, Rocha M, Winter J, Greenson J, Colombi C, Dawson G, Vismara LA, Sugar CA, Hellemann G, Whelan F, Talbott M. A Multisite Randomized Controlled Two-Phase Trial of the Early Start Denver Model Compared to Treatment as Usual. J Am Acad Child Adolesc Psychiatry. 2019 Sep;58(9):853-865. doi: 10.1016/j.jaac.2019.01.004. Epub 2019 Jan 24. PMID: 30768394.

The outcome measure social communication was reported but only in a graph. No absolute values were reported. No other outcome measures of interest were reported.

Rogers SJ, Yoder P, Estes A, Warren Z, McEachin J, Munson J, Rocha M, Greenson J, Wallace L, Gardner E, Dawson G, Sugar CA, Hellemann G, Whelan F. A Multisite Randomized Controlled Trial Comparing the Effects of Intervention Intensity and Intervention Style on Outcomes for Young Children With Autism. J Am Acad Child Adolesc Psychiatry. 2021 Jun;60(6):710-722. doi: 10.1016/j.jaac.2020.06.013. Epub 2020 Aug 24. PMID: 32853704; PMCID: PMC8057785.

Wrong comparison (EIBI versus ESDM; different intensities).

Shih W, Shire S, Chang YC, Kasari C. Joint engagement is a potential mechanism leading to increased initiations of joint attention and downstream effects on language: JASPER early intervention for children with ASD. J Child Psychol Psychiatry. 2021 Oct;62(10):1228-1235. doi: 10.1111/jcpp.13405. Epub 2021 Mar 25. PMID: 33768537; PMCID: PMC9879144.

Intervention is provided by teaching assistants and not by the parents.

Shire SY, Chang YC, Shih W, Bracaglia S, Kodjoe M, Kasari C. Hybrid implementation model of community-partnered early intervention for toddlers with autism: a randomized trial. J Child Psychol Psychiatry. 2017 May;58(5):612-622. doi: 10.1111/jcpp.12672. Epub 2016 Dec 14. PMID: 27966784.

Intervention is provided by teaching assistants and not by the parents.

Shire SY, Gulsrud A, Kasari C. Increasing Responsive Parent-Child Interactions and Joint Engagement: Comparing the Influence of Parent-Mediated Intervention and Parent Psychoeducation. J Autism Dev Disord. 2016 May;46(5):1737-47. doi: 10.1007/s10803-016-2702-z. PMID: 26797940; PMCID: PMC4826805.

Wrong comparison (JASPER versus parent education intervention).

Shire SY, Shih W, Barriault T, Kasari C. Exploring coaching and follow-up supports in community-implemented caregiver-mediated JASPER intervention. Autism. 2022 Apr;26(3):654-665. doi: 10.1177/13623613211066132. Epub 2021 Dec 28. PMID: 34961342.

Wrong comparison (immediate coaching JASPER versus observe and coach JASPER).

Sinai-Gavrilov Y, Gev T, Gordon I, Mor-Snir I, Vivanti G, Golan O. Micro-Analyses Reveal Increased Parent-Child Positive Affect in Children with Poorer Adaptive Functioning Receiving the ESDM. J Autism Dev Disord. 2022 Dec 9. doi: 10.1007/s10803-022-05819-1. Epub ahead of print. PMID: 36484962.

Wrong comparison (PB-ESDM versus mutlidisciplinary developmental intervention).

Solomon R, Van Egeren LA, Mahoney G, Quon Huber MS, Zimmerman P. PLAY Project Home Consultation intervention program for young children with autism spectrum disorders: a randomized controlled trial. J Dev Behav Pediatr. 2014 Oct;35(8):475-85. doi: 10.1097/DBP.0000000000000096. PMID: 25264862; PMCID: PMC4181375.

Wrong intervention (PLAY, which is not offered in NL).

Sterrett K, Holbrook A, Landa R, Kaiser A, Kasari C. The effect of responsiveness to speech-generating device input on spoken language in children with autism spectrum disorder who are minimally verbal. Augment Altern Commun. 2023 Mar;39(1):23-32. doi: 10.1080/07434618.2022.2120070. Epub 2022 Oct 20. PMID: 36267016; PMCID: PMC10115914.

Wrong comparison (JASPER+EMT versus JASPER+EMT+speech-generating device).

Tellegen CL, Sanders MR. A randomized controlled trial evaluating a brief parenting program with children with autism spectrum disorders. J Consult Clin Psychol. 2014 Dec;82(6):1193-200. doi: 10.1037/a0037246. Epub 2014 Jun 30. PMID: 24979315.

Included in Deb (2020).

Valeri G, Casula L, Menghini D, Amendola FA, Napoli E, Pasqualetti P, Vicari S. Cooperative parent-mediated therapy for Italian preschool children with autism spectrum disorder: a randomized controlled trial. Eur Child Adolesc Psychiatry. 2020 Jul;29(7):935-946. doi: 10.1007/s00787-019-01395-5. Epub 2019 Sep 23. PMID: 31549310.

Wrong comparison (CPMT versus low-intensity psychosocial intervention).

Vernon TW, Holden AN, Barrett AC, Bradshaw J, Ko JA, McGarry ES, Horowitz EJ, Tagavi DM, German TC. A Pilot Randomized Clinical Trial of an Enhanced Pivotal Response Treatment Approach for Young Children with Autism: The PRISM Model. J Autism Dev Disord. 2019 Jun;49(6):2358-2373. doi: 10.1007/s10803-019-03909-1. PMID: 30756274.

Wrong intervention (PRISM, which is not offered in NL).

Vismara, L. A., McCormick, C. E. B., Wagner, A. L., Monlux, K., Nadhan, A., & Young, G. S. (2018). Telehealth Parent Training in the Early Start Denver Model: Results From a Randomized Controlled Study. Focus on Autism and Other Developmental Disabilities33(2), 67–79. doi: 10.1177/1088357616651064.

Wrong comparator (telehealth).

Wang SH, Zhang HT, Zou YY, Cheng SM, Zou XB, Chen KY. Efficacy and moderating factors of the Early Start Denver Model in Chinese toddlers with autism spectrum disorder: a longitudinal study. World J Pediatr. 2023 Aug;19(8):741-752. doi: 10.1007/s12519-022-00555-z. Epub 2022 Jun 13. PMID: 35697958.

The outcome measure social communication was reported but only as baseline values, no follow-up values. No other outcome measures of interest were reported.

Whitehouse AJO, Varcin KJ, Alvares GA, Barbaro J, Bent C, Boutrus M, Chetcuti L, Cooper MN, Clark A, Davidson E, Dimov S, Dissanayake C, Doyle J, Grant M, Iacono T, Maybery M, Pillar S, Renton M, Rowbottam C, Sadka N, Segal L, Slonims V, Taylor C, Wakeling S, Wan MW, Wray J, Green J, Hudry K. Pre-emptive intervention versus treatment as usual for infants showing early behavioural risk signs of autism spectrum disorder: a single-blind, randomised controlled trial. Lancet Child Adolesc Health. 2019 Sep;3(9):605-615. doi: 10.1016/S2352-4642(19)30184-1. Epub 2019 Jul 16. PMID: 31324597.

Wrong population (children with ASD risk behaviors).

Yoder PJ, Lieberman RG. Two years of early start Denver model reduces cognitive and language impairments in very young children with Autism spectrum disorders. Evidence-Based Communication Assessment and Intervention. Aug 2010;4(3):120-123. doi: 10.1080/17489539.2010.507625.

Wrong publication type (commentary).

Zhang B, Liang S, Chen J, Chen L, Chen W, Tu S, Hu L, Jin H, Chu L. Effectiveness of peer-mediated intervention on social skills for children with autism spectrum disorder: a randomized controlled trial. Transl Pediatr. 2022 May;11(5):663-675. doi: 10.21037/tp-22-110. PMID: 35685075; PMCID: PMC9173870.

Wrong comparison (peer-mediated intervention versus ABA-based EIBI).

Beoordelingsdatum en geldigheid

Laatst beoordeeld  : 19-05-2025

De Nederlandse Vereniging voor Autisme autoriseert de richtlijn maar niet de module ‘Vroege interventies’ omdat zij zich niet kan vinden in de inhoud.

Initiatief en autorisatie

Initiatief:
  • Nederlandse Vereniging voor Psychiatrie
Geautoriseerd door:
  • Nederlandse Vereniging voor Kindergeneeskunde
  • Nederlandse Vereniging voor Psychiatrie
  • Nederlands Instituut van Psychologen
  • Artsen Jeugdgezondheidszorg Nederland
  • MIND Landelijk Platform Psychische Gezondheid
  • Oudervereniging Balans
  • Nederlandse Vereniging voor Autisme
  • Vaktherapie Nederland

Algemene gegevens

De ontwikkeling/herziening van deze richtlijnmodule werd ondersteund door het Kennisinstituut van de Federatie Medisch Specialisten (www.demedischspecialist.nl/kennisinstituut) en werd gefinancierd uit de Kwaliteitsgelden Medisch Specialisten (SKMS). De financier heeft geen enkele invloed gehad op de inhoud van de richtlijnmodule.

Samenstelling werkgroep

Voor het ontwikkelen van de richtlijnmodule is in 2022 een multidisciplinaire werkgroep ingesteld, bestaande uit vertegenwoordigers van alle relevante specialismen (zie hiervoor de Samenstelling van de werkgroep) die betrokken zijn bij de zorg voor kinderen en jeugd met autismespectrumstoornissen. Alle werkgroepleden hebben deelgenomen aan de werkgroep om het perspectief van de vereniging te vertegenwoordigen.

 

Werkgroep

  • Mevr. dr. Anna van der Miesen, arts-onderzoeker, Amsterdam UMC, Amsterdam, NVvP
  • Mevr. dr. Annelies de Bildt, psycholoog, Accare, Groningen, NIP
  • Mevr. Claudette Nouris, patiëntvertegenwoordiger, Landelijke Oudervereniging Balans
  • Mevr. dr. Els Blijd-Hoogewys, klinisch psycholoog, Psychiatrie Noord, Groningen, NIP
  • Mevr. dr. Fleur Velders, kinder- en jeugdpsychiater, Universitair Medisch Centrum Utrecht, Utrecht, NVvP
  • Mevr. drs. Gemma Witteman, jeugdarts, Karakter kinder- en jeugdpsychiatrie, Enschede, AJN jeugdartsen
  • Mevr. dr. Janneke Zinkstok, kinder- en jeugdpsychiater, Radboud Universitair Medisch Centrum, Nijmegen, NVvP
  • Dhr. Jasper Wagteveld, ervaringsdeskundige, NVA
  • Mevr. dr. Jopje Ruskamp, kinderarts, Universitair Medisch Centrum Utrecht, Utrecht, NVK
  • Dhr. drs. Jos Boer, verpleegkundig specialist, Dimence Groep, Deventer, V&VN
  • Dhr. dr. Mathieu Pater, muziektherapeut, Muziek en Therapie, Vaktherapie Nederland
  • Dhr. dr. Richard Vuijk, klinisch psycholoog - psychotherapeut, SARR Autisme Rotterdam – onderdeel van Antes Parnassia Groep, Rotterdam, NIP
  • Mevr. dr. Wietske Ester, kinder- en jeugdpsychiater, Curium Leids Universitair Medisch Centrum, Leiden en Sarr Autisme Rotterdam-Youz Kinder- en jeugdpsychiatrie, Rotterdam NVvP
  • Dhr. prof. dr. Wouter Staal, kinder- en jeugdpsychiater, Radboud Universitair Medisch Centrum, Nijmegen, NVvP

Klankbordgroep

  • Mevr. prof. dr. Maretha de Jonge, orthopedagoog-generalist, Universitair Medisch Centrum Utrecht, Utrecht, NVO
  • Mevr. prof. dr. Tjitske Kleefstra, klinisch geneticus, Radboud Universitair Medisch Centrum, Nijmegen, VKGN

Met ondersteuning van

  • Mevr. drs. Beatrix Vogelaar, adviseur, Kennisinstituut van de Federatie Medisch Specialisten
  • Mevr. drs. Laura van Wijngaarden, junior adviseur, Kennisinstituut van de Federatie Medisch Specialisten
  • Dhr. drs. Toon Lamberts, senior-adviseur, Kennisinstituut van de Federatie Medisch Specialisten

Belangenverklaringen

De Code ter voorkoming van oneigenlijke beïnvloeding door belangenverstrengeling is gevolgd. Alle werkgroepleden hebben schriftelijk verklaard of zij in de laatste drie jaar directe financiële belangen (betrekking bij een commercieel bedrijf, persoonlijke financiële belangen, onderzoeksfinanciering) of indirecte belangen (persoonlijke relaties, reputatiemanagement) hebben gehad. Gedurende de ontwikkeling of herziening van een module worden wijzigingen in belangen aan de voorzitter doorgegeven. De belangenverklaring wordt opnieuw bevestigd tijdens de commentaarfase. Een overzicht van de belangen van werkgroepleden en het oordeel over het omgaan met eventuele belangen vindt u in onderstaande tabel. De ondertekende belangenverklaringen zijn op te vragen bij het secretariaat van het Kennisinstituut van de Federatie Medisch Specialisten. 

Werkgroeplid

Functie

Nevenfuncties

Gemelde belangen

Ondernomen actie

Mevr. dr. Anna van der Miesen

02-2023--04-2024: CAMH, Toronto, Canada: post-doc onderzoeker

02-2023-heden: Amsterdam UMC, lokatie VUmc, post-doc onderzoeker

04-2024-heden: GGZ inGeest, arts-assistent in opleiding tot psychiater

* Archives of Sexual Behavior, International Journal of Transgender Health: editorial board member (onbetaald).

* Faculty of General Education Initiative (GEI), World Professional Association for Transgender Health (betaald).

* Scientific Committee, European Professional Association for Transgender Health (onbetaald).

* Lid kerngroep Female Autism Network of the Netherlands (onbetaald).

 

* Robert Wood Johnson Foundation - Investigating Portable Components of the Netherlands Gender Affirming Care Policy to Improve Transgender Youth Health Outcomes in the United States (projectleider).

* KNAW Ter Meulen beurs - Gender Diversity in a Prospective Clinical Youth Cohort: Prevalence Rates and Associations with Suicidality, Self-Harm, Mental Health Risks, and Protective Factors (projectleider).

* Womenmind 2022 Postdoctoral Fellowship Competition - Sex Assigned at Birth, Gender Identity, and Gender Identity Diversity Differences in a Prospective Clinical Youth Cohort: Prevalence Rates and Associations with Suicidality, Self-Harm, Mental Health Risks, and Protective Factors (projectleider).

* Discovery Fund 2022 Postdoctoral Fellowship – Declined.

* Agis Innovatiefonds - Buitengewoon jezelf (geen projectleider).

 

* Arcus Foundation: Transgender Youth Outcomes Initiative: Understanding the Impacts of Trans Youth US State-BasedPolicies to Drive Policy and Public Perception Change (projectleider)

* Womenmind 2023 Seed Funding Competition:An Intersectional Lens to Youth Wellness Hubs Ontario: Learning with Girls/Women and Gender Diverse Youth (geen projectleider)

* Fonds Wetenschappelijk Onderzoek Seksualiteit:Beyond Gender-Related Medical Care: The influence of Policies, Practices, and Contextual factors on Transgender Adolescent’s Mental Health and Wellbeing (projectleider)

* General Research Fund Hong Kong University:Both sides now: Expressed and perceived gender (non)conformity and psychosocial wellbeing in Chinese community children (projectleider)

womenmind 2024 Seed Funding Competition: Creating a * Community-Developed Self-Advocacy Tool for Autistic Gender-Diverse Adolescents for the Promotion of Wellbeing (geen projectleider)

* Canadian Institutes

of Health Research: Strengthening Youth Wellness Hubs Ontario's Learning Health System through Enhancing Measurement Based Care, Data Integration and Equity-focused Practices (geen projectleider)

 

Alle subsidies zijn charitatief (geen sponsoring door de industrie).

Geen restricties.

Mevr. dr. Annelies de Bildt

Psycholoog, Accare, Groningen.

Stuurgroepvoorzitter ADOS en ADI-R

 

* ZonMw (08450012220002) Verbeteren van diagnostiek bij mensen met een matige of ernstige verstandelijke beperking (projectleider).

* Auteur NL bewerking ADI-R en ADOS

* ADOS en ADI-R trainer

* Redacteur van een boek over autisme bij kinderen, uitgegeven in 2021, bij BSL.

Geen restricties.

Mevr. Claudette Nouris

Patiëntvertegenwoordiger, Landelijke Oudervereniging Balans

Geen.

Geen.

Geen restricties.

Mevr. dr. Els Blijd-Hoogewys

 

Behandel Inhoudelijk Manager, Klinisch psycholoog en senior onderzoeker bij INTER-PSY (full-time)

 

Per 1 januari 2025 psycholoog bij Psychiatrie Noord.

Mede-oprichter en voorzitter FANN (Female Autism Network of the Netherlands), onbetaald

Voorzitter CASS18+ (consortium voor BIG geregistreerde behandelaars van volwassenen met autisme), onbetaald

Lid Autisme Jonge Kind, landelijk expertise netwerk, onbetaald

Lid Alliantie Gender & GGZ, namens NIP, onbetaald

Organisator Nationaal Autisme Congres, deelname in winst/verlies

Diverse lezingen over autisme, betaald

Boeken over autisme geschreven of de redactie daarvan gedaan:

  • ASS bij je man, wat dan (2014)
  • Lifehacks voor vrouwen met autisme. Handige tips voor dagelijkse problemen. Deel 1 (2024)
  • Lifehacks voor vrouwen met autisme. Handige tips voor dagelijkse problemen. Deel 2 (2024)
  • Behandeling van volwassenen met een autismespectrumstoornis. Deel 1 (2021)
  • Lifehacks voor meiden met autisme. Handige tips voor dagelijkse problemen.  (2021) – nieuw toegevoegd
  • Behandeling van volwassenen met een autismespectrumstoornis. Deel 2 (2021) – nieuw toegevoegd

Mede-aanvrager van een onderzoek

NWO, Breaking the cycle: an inclusive school environment outside the classroom for adolescents with ASD (geen projectleider).

Geen restricties.

Mevr. dr. Fleur Velders

Kinder- en jeugdpsychiater, Universitair Medisch Centrum Utrecht, Utrecht

Nederlands Jeugd Instituut; commissielid erkenningscommissie jeugdinterventies (vacatiegelden)

* Zorginstituut Nederland, Samen beslissen in de praktijk met kinderen, gericht op kinderen met psychische klachten (geen projectleider).

Geen restricties.

Mevr. drs. Gemma Witteman

Jeugdarts, Karakter kinder- en jeugdpsychiatrie, Enschede

 

Werkzaamheden diagnostiek en behandeling van kinderen met ASS

Geen.

Geen.

Geen restricties.

Mevr. dr. Janneke Zinkstok

Kinder- en jeugdpsychiater, Radboud Universitair Medisch Centrum, Nijmegen

* Redactie Tijdschrift voor Psychiatrie (onbetaald, maar vacatiegelden)

* Ethics committee internatinal society psycho genetics

* ZonMW, COFIT-PSY project: Gevolgen van COVID-19-maatregelen voor mensen met psychiatrische aandoeningen (projectleider).

* Radboudumc Principal Clinician subsidie voor innovatie project om ouders van kinderen met aangeboren ontwikkelingsstoornissen te ondersteunen (projectleider).

* Agis innovatiefonds subsidie voor project om ervaringsdeskundigheid te ontsluiten voor jongeren met autism en licht verstandelijke beperking (projectleider).

* ZonMW middellang - Een verloren generatie? Effecten van de COVID-19 pandemie op de mentale gezondheid van jongeren (geen projectleider)

 

Geen restricties.

Dhr. Jasper Wagteveld

Ervaringsdeskundig adviseur, Dokter Bosman

Geen.

Geen.

Geen restricties.

Mevr. dr. Jopje Ruskamp

Kinderarts, Universitair Medisch Centrum Utrecht, Utrecht

Geen.

Geen.

Geen restricties.

Dhr. drs. Jos Boer

Verpleegkundig specialist, Dimence Groep, Deventer

 

Per januari 2023 bij het Specialistisch Centrum Ontwikkelingsstoornissen (SCOS).

Promovendus Brain Division UMC Utrecht

Geen.

Geen restricties.

Dhr. dr. Mathieu Pater

Muziektherapeut, ZZP.

Geen.

Geen.

Geen restricties.

Dhr. dr. Richard Vuijk

 

Klinisch psycholoog - psychotherapeut, SARR Autisme Rotterdam – onderdeel van Antes Parnassia Groep, Rotterdam, NIP

Eigen praktijk voor scholing AutismeSpectrumNederland.

Auteur:

Werkwijzer - Psychodiagnostiek autismespectrumstoornis volwassenen (2018) en Nederlands Interview voor Diagnostiek Autismespectrumstoornis bij volwassenen (NIDA) – Handleiding en Interview

Geen restricties.

Mevr. dr. Wietske Ester

Kinder- en jeugdpsychiater, Youz Kinder- en jeugdpsychiatrie, SARR Autisme, Rotterdam.

Associate Professor, kinder- en jeugdpasychiater, Curium-LUMC, Leiden.

Geen.

* Parnassia Groep, IMDAD studie, autisme, jeugd en ouders (projectleider).

* Korczak stichting, Tandem studie, autisme, jeugd en ouders (projectleider).

* ZonMW, Academische Werkplaats Autisme, Projectgroep 2 hulp, behandeling en medicatie. Inmiddels afgerond, mede-trekker.

* Parnassia Academie, 3e PhD Tandem studie, autisme, jeugd, ouders (projectleider).

* Curium-LUMC, PhD AWA; Lifelines, autisme, volwassenen (projectleider).

Geen restricties.

Dhr. prof. dr. Wouter Staal

Kinder- en jeugdpsychiater, Radboud Universitair Medisch Centrum, Nijmegen

* Ambasadeur NVA / balans (patiënten-vereniging)

* Voorzitter Wetenschappelijke Raad, Kennis Centrum Kinder- en Jeugdpsychiatrie                                            * Vicevoorzitter visitatie commissie TOP-GGz                                                                                                                      * Bestuurslid Nederlands Autisme Register (NAR)

* Lid Autism Europe

* Bestuurslid en mede oprichter DREAMS

* Lid kerngroep Autisme Jonge kind

* Consulent huisartsen praktijken Thermion en Oosterhout                                                                                                          * Lid stuurgroep Pro Desing your life (RAAK, NWO)

* Lid stuurgroep lectoraat JP Teunisse- ASS levensloop                                                                         

* Lid RINO expertgroep autisme

* Enactive Mind Autisme: van denkwijze naar werkwijze. (NWO, RAAK) Teunisse JP, Orgassa A, Swinkels E, Leenders J, Staal WG, Tomese E, van Hunsel E, Kok L, Zandvliet S, Strijbos D. NWO (1000k)

* CURE4LIFE: Development and societal impact of stem cell based genetic medicines, Staal FJT, ….Staal WG…Bartels (NWO, NWA-ORC) (5574k)

* Ontregeling omringd. Een normatief-empirisch onderzoek naar morele en juridische vraagstukken bij intensieve netwerkzorg thuis voor jongeren met ernstige mentale problemen. Van Gurp JLP, van der Meer AF…Staal WG… Lindauer R (ZonMw). (200k)

* Design Your Life (NWO), van Dijk J, van der Voort M, Staal WG (350k)

* A multi-modal lifestyle intervention program in routine clinical care for children with mental disorders. Staal WG (main applicant), Muskens J, Rommelse N, Klip H, Cahn W, J Deenink,Oomen M, Pillen S, Roosenstiel I, Schene A. (500k)

* Personalised interventions to support active leisure time for social (re)integration in psychosis. (NWO, MOVE-2). Cahn W, van Meijel B, Backx F, Schnack H, Deenink J, Swildens W, Staal WG, Koomen L, Jorg F, Scheepers F. (350k)

* Pegasus: Equine-assisted Therapy for therapy-resistant adolescents with autism spectrum disorders, a multiple baseline ABA-study’ (ZonMW).Rommelse N, den Boer J, Klip H, Staal WG, Blonk A, Henke K, van Noort E, Tielkens M, van Rosmalen S. (440k)

* ProMiSe: Tackling defective Prefrontal development in Mendelian

Syndromes (NWO) . Kolk S, Staal WG, Kleefsta T, Egger J, Swaab H, Santen G, Jacobs F. (1600k)

* Perspectief wisseling van leerkracht en in het omgaan met leerlinggedrag in de klas (NRO- NWO). Walraven M, Staal WG, Ottenheym A enTruijens P (400k)

Geen restricties.

Klankbordgroeplid

Functie

Nevenfuncties

Gemelde belangen

Ondernomen actie

Tjitske Kleefstra

Klinisch geneticus

Radboudumc

Werkgroeplid richtlijn Etiologische diagnostiek bij kinderen met een ontwikkelingsachterstand/ verstandelijke beperking (NVK)

Ik heb extern gefinancierd onderzoek (ZonMW) maar dat betreft fundamenteel onderzoek

Geen restricties

Maretha de Jonge

Hoogleraar Orthopedagogiek, Universiteit Leiden

- Hoofdopleider OG opleiding regio Leiden/R'dam/Utrecht,

Stichting BOPP-WEST en RINOgroep, gedetacheerd door Universiteit Leiden waardoor geen extra inkomsten

- initiator/oprichter en adviseur van de Stichting behandeling selectief mutisme, onbezoldigd

- Lid wetenschappelijke adviesraad Kenniscentrum Kinder en Jeugdpsychiatrie, onbezoldigd

- Initiator en voorzitter Stichting Nour, onbezoldigd

- Bestuurslid Stichting Jong, onbezoldigd

- Lid landelijke stuurgroep ADI-R en ADOS trainingen en docent in ADI-R en ADOS-2 trainingen, uurvergoeding komt ten goede aan researchbudget persoonlijk in te zetten researchgelden, Universiteit Leiden

- Vertaler van ADI-R en ADOS-2, auteursvergoeding (2,5% van de opbrengsten van de uitgeverij Hogrefe) komt ten goede aan mijn oud-werkgever UMC Utrecht

Grotendeels 1e geldstroom, kleine subsidie van het Leids Universiteits Fonds/ Tiny & Anne van Doorne Fonds 5000,-

Geen restricties

Inbreng patiëntenperspectief

Er werd aandacht besteed aan het patiëntenperspectief door afgevaardigden van de verenigingen Landelijke Oudervereniging Balans en Nederlandse Vereniging voor Autisme te betrekken in de werkgroep. De verkregen input is meegenomen bij het opstellen van de uitgangsvragen, de keuze voor de uitkomstmaten en bij het opstellen van de overwegingen (zie kop “Waarden en voorkeuren van patiënten”). De inhoud van de modules ‘Vroege interventies’ en ‘Randvoorwaarden’ zijn tevens in conceptversie besproken binnen een focusgroep met deelnemers vanuit MIND, het Nederlands Autisme Register (NAR), De Nederlandse Vereniging voor Autisme (NVA) en Landelijke Oudervereniging Balans. Eventueel aangeleverde commentaren zijn meegewogen in de eindformuleringen.

 

Kwalitatieve raming van mogelijke financiële gevolgen in het kader van de Wkkgz

Bij de richtlijn is conform de Wet kwaliteit, klachten en geschillen zorg (Wkkgz) een kwalitatieve raming uitgevoerd of de aanbevelingen mogelijk leiden tot substantiële financiële gevolgen. Bij het uitvoeren van deze beoordeling zijn richtlijnmodules op verschillende domeinen getoetst (zie het stroomschema op de Richtlijnendatabase).

Module

Uitkomst raming

Toelichting

Vroege interventies

Geen financiële gevolgen

Hoewel uit de toetsing volgt dat de aanbevelingen breed toepasbaar zijn (5.000-40.000 patiënten), volgt ook uit de toetsing dat het overgrote deel (±90%) van de zorgaanbieders en zorgverleners al aan de norm voldoet of dat het geen nieuwe manier van zorgverlening of andere organisatie van zorgverlening betreft.

 

Er worden daarom geen substantiële financiële gevolgen verwacht.

Werkwijze

AGREE

Deze richtlijnmodule is opgesteld conform de eisen vermeld in het rapport Medisch Specialistische Richtlijnen 2.0 van de adviescommissie Richtlijnen van de Raad Kwaliteit. Dit rapport is gebaseerd op het AGREE II instrument (Appraisal of Guidelines for Research & Evaluation II; Brouwers, 2010).

 

Knelpuntenanalyse en uitgangsvragen

Tijdens de voorbereidende fase inventariseerde de werkgroep de knelpunten in de zorg voor kinderen en jongeren met autisme. Tevens zijn er knelpunten aangedragen door de Academische werkplaats autisme (AWA), Beroepsvereniging van professionals in sociaal werk (BPSW), Inspectie Gezondheidszorg en Jeugd (IGJ), Landelijke Beroepsgroep voor Begeleiders Onderwijs (LBBO), Landelijke Beroepsgroep Remedial Teachers (LBRT), MIND,

Nederlands Huisartsen Genootschap (NHG), Nederlandse Associatie Physician Assistants (NAPA), Nederlandse Federatie van Universitair Medische Centra (NFU), Nederlandse Vereniging Artsen Verstandelijk Gehandicapten (NVAVG), Nederlandse Vereniging van Pedagogen en Onderwijskundigen (NVO), Nederlandse Vereniging van Ziekenhuizen (NVZ), Praktijkondersteuners geestelijke gezondheidszorg (POH-ggz), Samenwerkende Topklinische opleidingsZiekenhuizen (STZ), Vereniging Innovatieve Geneesmiddelen (VIG), Vereniging Klinische Genetica Nederland (VKGN), Vereniging Nederlandse Gemeenten (VNG), Zelfstandige Klinieken Nederland (ZKN), Zorginstitituut Nederland (ZiNL) en Zorgverzekeraars Nederland (ZN) via een enquête. Op basis van de uitkomsten van de knelpuntenanalyse zijn door de werkgroep concept-uitgangsvragen opgesteld en definitief vastgesteld.

 

Uitkomstmaten

Na het opstellen van de zoekvraag behorende bij de uitgangsvraag inventariseerde de werkgroep welke uitkomstmaten voor de patiënt relevant zijn, waarbij zowel naar gewenste als ongewenste effecten werd gekeken. Hierbij werd uit oogpunt van praktische uitvoerbaarheid een maximum van acht uitkomstmaten gehanteerd. De werkgroep waardeerde deze uitkomstmaten volgens hun relatieve belang bij de besluitvorming rondom aanbevelingen, als cruciaal (kritiek voor de besluitvorming), belangrijk (maar niet cruciaal) en onbelangrijk. Tevens definieerde de werkgroep tenminste voor de cruciale uitkomstmaten welke verschillen zij klinisch (patiënt) relevant vonden.

 

Methode literatuursamenvatting

Een uitgebreide beschrijving van de strategie voor zoeken en selecteren van literatuur is te vinden onder ‘Zoeken en selecteren’ onder Onderbouwing. Indien mogelijk werd de data uit verschillende studies gepoold in een random-effects model. Review Manager 5.4 werd gebruikt voor de statistische analyses. De beoordeling van de kracht van het wetenschappelijke bewijs wordt hieronder toegelicht.

 

Beoordelen van de kracht van het wetenschappelijke bewijs

De kracht van het wetenschappelijke bewijs werd bepaald volgens de GRADE-methode. GRADE staat voor ‘Grading Recommendations Assessment, Development and Evaluation’ (zie http://www.gradeworkinggroup.org/). De basisprincipes van de GRADE-methodiek zijn: het benoemen en prioriteren van de klinisch (patiënt) relevante uitkomstmaten, een systematische review per uitkomstmaat, en een beoordeling van de bewijskracht per uitkomstmaat op basis van de acht GRADE-domeinen (domeinen voor downgraden: risk of bias, inconsistentie, indirectheid, imprecisie, en publicatiebias; domeinen voor upgraden: dosis-effect relatie, groot effect, en residuele plausibele confounding).

 

GRADE onderscheidt vier gradaties voor de kwaliteit van het wetenschappelijk bewijs: hoog, redelijk, laag en zeer laag. Deze gradaties verwijzen naar de mate van zekerheid die er bestaat over de literatuurconclusie, in het bijzonder de mate van zekerheid dat de literatuurconclusie de aanbeveling adequaat ondersteunt (Schünemann, 2013; Hultcrantz, 2017).

GRADE

Definitie

Hoog

  • er is hoge zekerheid dat het ware effect van behandeling dichtbij het geschatte effect van behandeling ligt;
  • het is zeer onwaarschijnlijk dat de literatuurconclusie klinisch relevant verandert wanneer er resultaten van nieuw grootschalig onderzoek aan de literatuuranalyse worden toegevoegd.

Redelijk

  • er is redelijke zekerheid dat het ware effect van behandeling dichtbij het geschatte effect van behandeling ligt;
  • het is mogelijk dat de conclusie klinisch relevant verandert wanneer er resultaten van nieuw grootschalig onderzoek aan de literatuuranalyse worden toegevoegd.

Laag

  • er is lage zekerheid dat het ware effect van behandeling dichtbij het geschatte effect van behandeling ligt;
  • er is een reële kans dat de conclusie klinisch relevant verandert wanneer er resultaten van nieuw grootschalig onderzoek aan de literatuuranalyse worden toegevoegd.

Zeer laag

  • er is zeer lage zekerheid dat het ware effect van behandeling dichtbij het geschatte effect van behandeling ligt;
  • de literatuurconclusie is zeer onzeker.

Bij het beoordelen (graderen) van de kracht van het wetenschappelijk bewijs in richtlijnen volgens de GRADE-methodiek spelen grenzen voor klinische besluitvorming een belangrijke rol (Hultcrantz, 2017). Dit zijn de grenzen die bij overschrijding aanleiding zouden geven tot een aanpassing van de aanbeveling. Om de grenzen voor klinische besluitvorming te bepalen moeten alle relevante uitkomstmaten en overwegingen worden meegewogen. De grenzen voor klinische besluitvorming zijn daarmee niet één op één vergelijkbaar met het minimaal klinisch relevant verschil (Minimal Clinically Important Difference, MCID). Met name in situaties waarin een interventie geen belangrijke nadelen heeft en de kosten relatief laag zijn, kan de grens voor klinische besluitvorming met betrekking tot de effectiviteit van de interventie bij een lagere waarde (dichter bij het nuleffect) liggen dan de MCID (Hultcrantz, 2017).

 

Overwegingen (van bewijs naar aanbeveling)

Om te komen tot een aanbeveling zijn naast (de kwaliteit van) het wetenschappelijke bewijs ook andere aspecten belangrijk en worden meegewogen, zoals beschikbaarheid, waarden en voorkeuren van patiënten, kosten (middelenbeslag), aanvaardbaarheid, haalbaarheid en implementatie. Deze aspecten zijn systematisch vermeld en beoordeeld (gewogen) onder het kopje ‘Overwegingen’ en kunnen (mede) gebaseerd zijn op expert opinion. Hierbij is gebruik gemaakt van een gestructureerd format gebaseerd op het evidence-to-decision framework van de internationale GRADE Working Group (Alonso-Coello, 2016a; Alonso-Coello 2016b). Dit evidence-to-decision framework is een integraal onderdeel van de GRADE methodiek.

 

Formuleren van aanbevelingen

De aanbevelingen geven antwoord op de uitgangsvraag en zijn gebaseerd op het beschikbare wetenschappelijke bewijs en de belangrijkste overwegingen, en een weging van de gunstige en ongunstige effecten van de relevante interventies. De kracht van het wetenschappelijk bewijs en het gewicht dat door de werkgroep wordt toegekend aan de overwegingen, bepalen samen de sterkte van de aanbeveling. Conform de GRADE-methodiek sluit een lage bewijskracht van conclusies in de systematische literatuuranalyse een sterke aanbeveling niet a priori uit, en zijn bij een hoge bewijskracht ook zwakke aanbevelingen mogelijk (Agoritsas, 2017; Neumann, 2016). De sterkte van de aanbeveling wordt altijd bepaald door weging van alle relevante argumenten tezamen. De werkgroep heeft bij elke aanbeveling opgenomen hoe zij tot de richting en sterkte van de aanbeveling zijn gekomen.

 

In de GRADE-methodiek wordt onderscheid gemaakt tussen sterke en zwakke (of conditionele) aanbevelingen. De sterkte van een aanbeveling verwijst naar de mate van zekerheid dat de voordelen van de interventie opwegen tegen de nadelen (of vice versa), gezien over het hele spectrum van patiënten waarvoor de aanbeveling is bedoeld. De sterkte van een aanbeveling heeft duidelijke implicaties voor patiënten, behandelaars en beleidsmakers (zie onderstaande tabel). Een aanbeveling is geen dictaat, zelfs een sterke aanbeveling gebaseerd op bewijs van hoge kwaliteit (GRADE gradering HOOG) zal niet altijd van toepassing zijn, onder alle mogelijke omstandigheden en voor elke individuele patiënt.

Implicaties van sterke en zwakke aanbevelingen voor verschillende richtlijngebruikers

 

 

Sterke aanbeveling

Zwakke (conditionele) aanbeveling

Voor patiënten

De meeste patiënten zouden de aanbevolen interventie of aanpak kiezen en slechts een klein aantal niet.

Een aanzienlijk deel van de patiënten zouden de aanbevolen interventie of aanpak kiezen, maar veel patiënten ook niet. 

Voor behandelaars

De meeste patiënten zouden de aanbevolen interventie of aanpak moeten ontvangen.

Er zijn meerdere geschikte interventies of aanpakken. De patiënt moet worden ondersteund bij de keuze voor de interventie of aanpak die het beste aansluit bij zijn of haar waarden en voorkeuren.

Voor beleidsmakers

De aanbevolen interventie of aanpak kan worden gezien als standaardbeleid.

Beleidsbepaling vereist uitvoerige discussie met betrokkenheid van veel stakeholders. Er is een grotere kans op lokale beleidsverschillen. 

Organisatie van zorg

In de knelpuntenanalyse en bij de ontwikkeling van de richtlijnmodule is expliciet aandacht geweest voor de organisatie van zorg: alle aspecten die randvoorwaardelijk zijn voor het verlenen van zorg (zoals coördinatie, communicatie, (financiële) middelen, mankracht en infrastructuur). Randvoorwaarden die relevant zijn voor het beantwoorden van deze specifieke uitgangsvraag zijn genoemd bij de overwegingen. Meer algemene, overkoepelende, of bijkomende aspecten van de organisatie van zorg worden behandeld in de module Randvoorwaarden.

 

Commentaar- en autorisatiefase

De conceptrichtlijnmodule werd aan de betrokken (wetenschappelijke) verenigingen en (patiënt) organisaties voorgelegd ter commentaar. De commentaren werden verzameld en besproken met de werkgroep. Naar aanleiding van de commentaren werd de conceptrichtlijnmodule aangepast en definitief vastgesteld door de werkgroep. De definitieve richtlijnmodule werd aan de deelnemende (wetenschappelijke) verenigingen en (patiënt) organisaties voorgelegd voor autorisatie en door hen geautoriseerd dan wel geaccordeerd.

 

Literatuur

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Alonso-Coello P, Schünemann HJ, Moberg J, Brignardello-Petersen R, Akl EA, Davoli M, Treweek S, Mustafa RA, Rada G, Rosenbaum S, Morelli A, Guyatt GH, Oxman AD; GRADE Working Group. GRADE Evidence to Decision (EtD) frameworks: a systematic and transparent approach to making well informed healthcare choices. 1: Introduction. BMJ. 2016 Jun 28;353:i2016. doi: 10.1136/bmj.i2016. PubMed PMID: 27353417.

 

Alonso-Coello P, Oxman AD, Moberg J, Brignardello-Petersen R, Akl EA, Davoli M, Treweek S, Mustafa RA, Vandvik PO, Meerpohl J, Guyatt GH, Schünemann HJ; GRADE Working Group. GRADE Evidence to Decision (EtD) frameworks: a systematic and transparent approach to making well informed healthcare choices. 2: Clinical practice guidelines. BMJ. 2016 Jun 30;353:i2089. doi: 10.1136/bmj.i2089. PubMed PMID: 27365494.

 

Brouwers MC, Kho ME, Browman GP, Burgers JS, Cluzeau F, Feder G, Fervers B, Graham ID, Grimshaw J, Hanna SE, Littlejohns P, Makarski J, Zitzelsberger L; AGREE Next Steps Consortium. AGREE II: advancing guideline development, reporting and evaluation in health care. CMAJ. 2010 Dec 14;182(18):E839-42. doi: 10.1503/cmaj.090449. Epub 2010 Jul 5. Review. PubMed PMID: 20603348; PubMed Central PMCID: PMC3001530.

 

Hultcrantz M, Rind D, Akl EA, Treweek S, Mustafa RA, Iorio A, Alper BS, Meerpohl JJ, Murad MH, Ansari MT, Katikireddi SV, Östlund P, Tranæus S, Christensen R, Gartlehner G, Brozek J, Izcovich A, Schünemann H, Guyatt G. The GRADE Working Group clarifies the construct of certainty of evidence. J Clin Epidemiol. 2017 Jul;87:4-13. doi: 10.1016/j.jclinepi.2017.05.006. Epub 2017 May 18. PubMed PMID: 28529184; PubMed Central PMCID: PMC6542664.

 

Medisch Specialistische Richtlijnen 2.0 (2012). Adviescommissie Richtlijnen van de Raad Kwalitieit. http://richtlijnendatabase.nl/over_deze_site/over_richtlijnontwikkeling.html

 

Neumann I, Santesso N, Akl EA, Rind DM, Vandvik PO, Alonso-Coello P, Agoritsas T, Mustafa RA, Alexander PE, Schünemann H, Guyatt GH. A guide for health professionals to interpret and use recommendations in guidelines developed with the GRADE approach. J Clin Epidemiol. 2016 Apr;72:45-55. doi: 10.1016/j.jclinepi.2015.11.017. Epub 2016 Jan 6. Review. PubMed PMID: 26772609.

 

Schünemann H, Brożek J, Guyatt G, et al. GRADE handbook for grading quality of evidence and strength of recommendations. Updated October 2013. The GRADE Working Group, 2013. Available from http://gdt.guidelinedevelopment.org/central_prod/_design/client/handbook/handbook.html.

Zoekverantwoording

Zoekacties zijn opvraagbaar. Neem hiervoor contact op met de Richtlijnendatabase.

Volgende:
Vaktherapeutische interventies