Results of inaugural international Down Syndrome Societal Services and Supports survey.
Genet Med
; 26(5): 101114, 2024 05.
Article
en En
| MEDLINE
| ID: mdl-38512346
ABSTRACT
PURPOSE:
We previously designed the Down Syndrome Societal Services and Supports Survey (DS-4S) to measure country-specific supports for people with Down syndrome (DS) across multiple life domains (healthcare, education, policy, independence, and community inclusion). We now report and analyze the results.METHODS:
We partnered with international DS consortia, who distributed the DS-4S to 154 cumulative members representing over 100 countries. Organizations were included if they had a holistic focus on the lives of people with DS and if at least 50% of their members either have DS or are family members of people with DS. Factor analysis was used to analyze the results.RESULTS:
We received survey responses from 55 different organizations in 50 countries who met inclusion criteria. Each country had complete data for at least 4 of the 5 domains. The lowest 5 scores were from countries in Africa and Asia; the highest 5 scores were in Europe and North America.CONCLUSION:
The responses to the DS-4S stratified countries within each surveyed domain. The DS-4S can now be used to track countries' progress over time and to determine which countries have best practices that might be replicated. We will publish the results and update them biennially at www.DownSyndromeQualityOfLife.com.Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Síndrome de Down
Límite:
Humans
Idioma:
En
Revista:
Genet Med
/
Genet. med
/
Genetics in medicine
Asunto de la revista:
GENETICA MEDICA
Año:
2024
Tipo del documento:
Article
Pais de publicación:
Estados Unidos