Clinical Trial Details
— Status: Completed
Administrative data
NCT number |
NCT03676660 |
Other study ID # |
201707041RINA |
Secondary ID |
|
Status |
Completed |
Phase |
|
First received |
|
Last updated |
|
Start date |
August 1, 2017 |
Est. completion date |
December 31, 2018 |
Study information
Verified date |
September 2021 |
Source |
National Taiwan University Hospital |
Contact |
n/a |
Is FDA regulated |
No |
Health authority |
|
Study type |
Observational
|
Clinical Trial Summary
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.
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.