NCT04255472

Brief Summary

Background: Increasing prevalence rates of developmental disorders (DDs) including Autism Spectrum Disorders (ASD) and intellectual disability are a public health priority particularly in Low and Middle Income countries (LIMC) and are included in the World Health Organization (WHO) mhGAP program. However, existing mental health care facilities and resources are insufficient in most low resource settings to cater for this increasing demand. To address this situation, Caregiver Skills Training (CST) program for children with developmental disorders and delays has been developed by the WHO to bridge the treatment gap in low resource settings. Objective: The objective of this study is to evaluate the effectiveness of the WHO CST program plus treatment as usual (TAU) vs. TAU to improve caregiver-child interaction in children with developmental disorders and delays, when implemented by non-specialist health care facilitators in a low-resource rural community settings of Rawalpindi, Pakistan. Methods: A two arm, single blind individual randomized controlled trial (RCT) will be carried out with 160 caregiver-child dyads with development disorders and delays in community settings of Rawalpindi, Pakistan. 160 caregiver-child dyads will be individually randomized on 1:1 allocation ratio into intervention (n=80) and control (n=80) arms. Participants in the intervention arm will receive 3-hours group training sessions of WHO CST program once every week for 9 weeks and 3 individual home sessions delivered via non-specialist health care facilitator over a duration of 3-months. The primary outcome is improvement in play-based caregiver-child interaction at 9-months post-intervention. The secondary outcomes are improvement in routine home-based caregiver-child interaction, child's social communication skills, adaptive behavior, emotional and behavioral problems and parental health related quality of life. The data on health services utilization will also be collected at 9-months post-intervention. Qualitative process evaluation with a sub-sample of study participants and trainers will be undertaken following the RCT. The study will be completed within an estimated period of 11-months. Discussion: Outcomes of the study will be the evidence on the effectiveness of WHO CST program to improve caregiver child interaction and improvement in social communication skills, adaptive behaviors of children with developmental disorders and delays in the low resource setting of Pakistan.

Trial Health

43
At Risk

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Enrollment
160

participants targeted

Target at P75+ for not_applicable

Timeline
Completed

Started Feb 2020

Geographic Reach
1 country

1 active site

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

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Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

September 14, 2019

Completed
5 months until next milestone

First Posted

Study publicly available on registry

February 5, 2020

Completed
6 days until next milestone

Study Start

First participant enrolled

February 11, 2020

Completed
11 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 31, 2020

Completed
1 month until next milestone

Study Completion

Last participant's last visit for all outcomes

January 31, 2021

Completed
Last Updated

February 25, 2020

Status Verified

February 1, 2020

Enrollment Period

11 months

First QC Date

September 14, 2019

Last Update Submit

February 23, 2020

Conditions

Outcome Measures

Primary Outcomes (1)

  • Play-based caregiver-child interaction

    The primary outcome will be change in play-based caregiver-child interaction using Joint Engagement Rating Inventory. An observational, video rated tool will be used to rate caregivers-child's engagement and behavior during play and home routine following a communication play protocol on a 7-point Likert scale The tool has been adapted for coding. caregivers' child interaction in the context of Pakistan. Fifteen-minute video taped caregiver-child interaction will be collected at baseline and at endpoint for families in both arms of the study. Caregivers will be asked to try play based routines (e.g. playing with toys or reading a book) with their child or home routines involving the child (e.g. feeding the child performing domestic chores). The videos will be singly coded by trained assessors.

    9-months post-intervention

Secondary Outcomes (5)

  • Adaptive functioning behaviors

    At baseline, 9-weeks and 9-months post-intervention follow-up.

  • Child emotional and behavioral problems

    At baseline, 9-weeks and 9-months post-intervention follow-up.

  • Parental health related quality of life

    At baseline, 9-weeks and 9-months post-intervention follow-up.

  • Health services utilization

    At baseline and 9-months post-intervention follow-up.

  • Communication and Symbolic Behavior

    Screening, 9-weeks & 9-months post-intervention follow-up.

Study Arms (2)

WHO caregiver skills training program

EXPERIMENTAL

Strategies to support children's communication skills by learning to engage in play activities and daily home routines activities with their caregivers.

Behavioral: WHO Caregiver skills training (CST) program

Treatment as usual (TAU)

EXPERIMENTAL

TAU in primary healthcare centers for childhood developmental disorders and delays usually consists of no treatment, or a range of alternate treatment regimes, such as multi-vitamin syrups and tablets.

Behavioral: Treatment as usual

Interventions

Caregivers are provided with tangible strategies to appropriately respond to their children's emotional regulation, engagement, and communication. Further, the program focuses on helping caregivers to develop their children's communication and adaptive skills while reducing challenging behavior by focusing on identifying the function of the behavior and learning to teach developmentally appropriate replacement skills. The WHO CST program includes nine group sessions delivered at a community venue (e.g., BHU, school, home) and three home visits: the first at entry prior to session 1, the second after session 4, and the third after the final group session. Training for program facilitators will be included prior to the delivery of the intervention.

WHO caregiver skills training program

WHO CST will be compared with TAU. TAU in primary healthcare centers for childhood developmental disorders and delays usually consists of no treatment, or a range of alternate treatment regimes, such as multi-vitamin syrups and tablets. Evidence-based mental health care is currently not available in primary healthcare centers. A complete record of services availed by the trial participants at tertiary mental healthcare center will be maintained by using an adapted Client Services Receipt Inventory (CSRI) for children with developmental disorders and delays at baseline and end point.

Treatment as usual (TAU)

Eligibility Criteria

Age2 Years - 9 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)

You may qualify if:

  • Children aged 2-9 years old, with developmental disorders and delays as screened by TQS
  • Screened positive on communication problems as identified by Communication and Symbolic Behavior Scale (CSBS) score \<41
  • Developmental Disability-Children's Global Assessment Scale (DD-CGAS) score ≥ 51 as assessed by clinician.

You may not qualify if:

  • Children having epilepsy with seizures in the previous 6 months
  • Children with Cerebral Palsy as assessed by the clinician.
  • Co-morbid physical and mental conditions in the child that require inpatient hospitalization.
  • Significant uncorrected hearing and visual impairment in child or parent.
  • Any severe psychiatric or physical illness in primary caregiver requiring inpatient hospitalization.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Human Development Research Foundation

Islamabad, Pakistan

RECRUITING

Related Publications (5)

  • mhGAP Intervention Guide for Mental, Neurological and Substance Use Disorders in Non-Specialized Health Settings: Mental Health Gap Action Programme (mhGAP). Geneva: World Health Organization; 2010. Available from http://www.ncbi.nlm.nih.gov/books/NBK138690/

    PMID: 23741783BACKGROUND
  • Chisholm D, Knapp MR, Knudsen HC, Amaddeo F, Gaite L, van Wijngaarden B. Client Socio-Demographic and Service Receipt Inventory--European Version: development of an instrument for international research. EPSILON Study 5. European Psychiatric Services: Inputs Linked to Outcome Domains and Needs. Br J Psychiatry Suppl. 2000;(39):s28-33. doi: 10.1192/bjp.177.39.s28.

    PMID: 10945075BACKGROUND
  • Wetherby, A.M. and B.M. Prizant, Communication and symbolic behavior scales (CSBS). 2003: Brookes Publishing Company.

    BACKGROUND
  • Sparrow SS, Cicchetti DV. Diagnostic uses of the Vineland Adaptive Behavior Scales. J Pediatr Psychol. 1985 Jun;10(2):215-25. doi: 10.1093/jpepsy/10.2.215. No abstract available.

    PMID: 4020603BACKGROUND
  • Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999 Feb;37(2):126-39. doi: 10.1097/00005650-199902000-00003.

    PMID: 10024117BACKGROUND

MeSH Terms

Conditions

Autism Spectrum DisorderLearning DisabilitiesDevelopmental DisabilitiesLanguage Development DisordersProblem Behavior

Interventions

galactosylceramide sulfotransferaseTherapeutics

Condition Hierarchy (Ancestors)

Child Development Disorders, PervasiveNeurodevelopmental DisordersMental DisordersCommunication DisordersNeurobehavioral ManifestationsNeurologic ManifestationsNervous System DiseasesSigns and SymptomsPathological Conditions, Signs and SymptomsLanguage DisordersBehavioral SymptomsBehaviorChild Behavior

Study Officials

  • Syed Usman Hamdani, PhD

    Human Development Research Foundation, Pakistan

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Syed Usman Hamdani, PhD

CONTACT

Study Design

Study Type
interventional
Phase
not applicable
Allocation
RANDOMIZED
Masking
DOUBLE
Who Masked
INVESTIGATOR, OUTCOMES ASSESSOR
Masking Details
Outcome assessors will be blind to the allocations status of participants. To ensure blinding, participants will be instructed to not disclose their allocation during assessment. Fidelity of masking will be ensured by having assessors guess the allocation status of participants at the end of assessments.
Purpose
TREATMENT
Intervention Model
PARALLEL
Model Details: Two arm, single blind individual randomized controlled trial (RCT)
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

September 14, 2019

First Posted

February 5, 2020

Study Start

February 11, 2020

Primary Completion

December 31, 2020

Study Completion

January 31, 2021

Last Updated

February 25, 2020

Record last verified: 2020-02

Data Sharing

IPD Sharing
Will not share

Locations