The Evaluation of Care Demand and Intervention Models for Individuals With ASD in Taiwan

The prevalence of autism in Taiwan has been significantly increasing over this decade. Though early intervention program and special and resource education have been applied in helping individuals with autism in Taiwan, studies regarding autism in this country so far focus mostly on the prevalence and demographics in restricted populations, diagnostic category, single case observation, and clinical research. Although the data of needs of care and intervention models in autism emerges in Western countries, there is a lack of such data in Taiwan. Due to the high prevalence, long-term impairing and lack of effective prevention, detection, and treatment for autism, tremendous of the resource is needed to be given to individuals with autism. However, the investigators do not know the gap between the need and provided care in currently. This study aims to understand the current state of needs of care and intervention in autism from different stakeholders to inform and improve the health care policies for autism and to establish a holistic care/intervention model for autism in Taiwan.

Study Overview

• Status: Completed
• Conditions: Autism Spectrum Disorder

Detailed Description

This study will enroll individuals with autism and their family members from autism-related medical, nongovernmental organizations, and general educational settings, where from elementary schools to colleges, in Taiwan. For patients and their family, the investigators will enroll total 2000 adult individuals with autism and their family members for the questionnaire survey. The needs of assessment and care, and intervention models in autism will be examined using the Chinese version of Camberwell Assessment of Need, autistic traits assessment, emotional difficulty questionnaire, quality of life and Self-administered questionnaire with different versions for stakeholders. The guides for parents and clinicians on autism will be discussed with the patient and family representatives and developed by different autism stakeholders, experts, and scholars based on regular research meetings. Quantitative analyses will be conducted to understand the need and difficulty of care and interventions in autism across different developmental stage.

The investigators anticipate to find differences in care needs by personal characteristics. The survey of the care needs of autism will provide family members, medical and nursing personnel, and related caregivers more information about understanding their care requirements. These results will help the government for the formulation of policies related to early treatment and long-term care. Finally, the guides for parents and clinician on autism would be suggested references.

• Study Type: Observational
• Enrollment (Actual): 1948

Contacts and Locations

Study Locations

• Taiwan
  • Taipei, Taiwan
    • National Taiwan Univeristy Hospital

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years to 30 years (Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

For patients and their family, we will enroll total 2000 adult individuals with autism and their family members for the questionnaire survey. The needs of assessment and care, and intervention models in autism will be examined using the Chinese version of Camberwell Assessment of Need, autistic traits assessment, emotional difficulty questionnaire, quality of life and Self-administered questionnaire with different versions for stakeholders.

Description

Inclusion Criteria:

• individuals with autism from autism-related medical, nongovernmental organizations, and general educational settings, where from elementary schools to colleges, in Taiwan.

Exclusion Criteria:

• family members of autism cannot complete questionnaire survey will be excluded from the study.

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Camberwell Assessment of Need (CAN)	The health and social needs of adults across 22 domains of life, such as accommodation, food, self-care, daytime activities, psychotic symptoms, childcare, money, psychological distress, physical health and relationshipsusing the Chinese version of Camberwell Assessment of Need	1 day

Collaborators and Investigators

• Sponsor: National Taiwan University Hospital

Study record dates

Study Major Dates

• Study Start (Actual): August 1, 2017
• Primary Completion (Actual): December 31, 2018
• Study Completion (Actual): December 31, 2018

Study Registration Dates

• First Submitted: September 17, 2018
• First Submitted That Met QC Criteria: September 17, 2018
• First Posted (Actual): September 19, 2018

Study Record Updates

• Last Update Posted (Actual): September 9, 2021
• Last Update Submitted That Met QC Criteria: September 1, 2021
• Last Verified: September 1, 2021

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Mental Disorders; Neurodevelopmental Disorders; Child Development Disorders, Pervasive; Autism Spectrum Disorder
• Other Study ID Numbers: 201707041RINA

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No