Designing an international survey for organisations serving people with Down syndrome

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

doi:10.1111/jar.13071

Designing an international survey for organisations serving people with Down syndrome

J Appl Res Intellect Disabil. 2023 May;36(3):497-506. doi: 10.1111/jar.13071. Epub 2023 Jan 19.

Authors

Daniel J Kats^{1

2}, Brian G Skotko^{1

3}, Gert de Graaf⁴, Ellen Skladzien⁵, Brian Takashi Hooper⁶, Rose Mordi⁷, Tetiana Mykhailenko⁸, Frank Buckley⁹, Vasiliki Patsiogiannis¹, Kavita Krell¹, Kelsey Haugen¹, Karen Donelan^{10

11

12}

Affiliations

¹ Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.
² School of Medicine, Case Western Reserve University, Cleveland, Ohio, USA.
³ Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
⁴ Dutch Down Syndrome Foundation, Meppel, The Netherlands.
⁵ Down Syndrome Australia, North Melbourne, Australia.
⁶ Acceptions, Tokyo, Japan.
⁷ Down Syndrome Foundation Nigeria, Lagos, Nigeria.
⁸ Ukrainian Down Syndrome Organization, Kyiv, Ukraine.
⁹ Down Syndrome Education International, Cumbria, UK.
¹⁰ Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts, USA.
¹¹ Health Policy Research Center, The Mongan Institute, Massachusetts General Hospital, Boston, Massachusetts, USA.
¹² Department of Medicine, Harvard Medical School, Harvard University, Boston, Massachusetts, USA.

PMID: 36655393
DOI: 10.1111/jar.13071

Abstract

Background: Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance.

Method: We formed a geographically diverse group of physicians, family members of people with Down syndrome, and members of Down syndrome not-for-profit organisations to create a survey of societal services and supports. We used a modified Delphi method and disseminated the survey to Down syndrome non-profit organisations worldwide.

Results: Our survey consists of 61 items categorised within five domains: Education, Community Inclusion, Independence, Healthcare, and Social and Policy Issues.

Conclusions: We developed a survey to measure societal services and supports available to people with Down syndrome as perceived by organisational leaders. Our methods might serve as a blueprint for other populations of people with intellectual and developmental disabilities.

Keywords: T21; down syndrome; quality of life; trisomy 21.

MeSH terms

Delivery of Health Care
Down Syndrome*
Family
Humans
Intellectual Disability*
Surveys and Questionnaires