Results of inaugural international Down Syndrome Societal Services and Supports survey

Daniel J Kats; Karen Donelan; Souvik Banerjee; Gert de Graaf; Ellen Skladzien; Brian Takashi Hooper; Rose Mordi; Tetiana Mykhailenko; Frank Buckley; Stephanie L Santoro; Vasiliki Patsiogiannis; Kavita Krell; Kelsey Haugen; Brian G Skotko

doi:10.1016/j.gim.2024.101114

Results of inaugural international Down Syndrome Societal Services and Supports survey

Genet Med. 2024 Mar 19:101114. doi: 10.1016/j.gim.2024.101114. Online ahead of print.

Authors

Affiliations

¹ Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA.
² Heller School for Social Policy and Management, Brandeis University, Waltham, MA; Health Policy Research Center, The Mongan Institute, Massachusetts General Hospital, Boston, MA; Department of Medicine, Harvard Medical School, Harvard University, Boston, MA.
³ Department of Economics, Indian Institute of Technology Bombay, Powai, Mumbai, India.
⁴ Dutch Down Syndrome Foundation, Meppel, The Netherlands.
⁵ Down Syndrome Australia, Melbourne, Australia.
⁶ Acceptions, 3-chōme-12-1 Shirakawa, Koto City, Tokyo, Japan.
⁷ Down Syndrome Foundation Nigeria, Lagos, Nigeria.
⁸ Ukrainian Down Syndrome Organization, Kyiv, Ukraine.
⁹ Down Syndrome Education International, Kirkby Lonsdale, Cumbria, United Kingdom.
¹⁰ Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA.
¹¹ Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA. Electronic address: bskotko@mgh.harvard.edu.

PMID: 38512346
DOI: 10.1016/j.gim.2024.101114

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.

Keywords: Down syndrome; Intellectual disability; Quality of life; T21; Trisomy 21.