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Health in Down syndrome: creating a conceptual model
S L Santoro1,2, M J Cabrera1, J P T Co2,3
1Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA.
Journal of Intellectual Disability Research : JIDR
|January 17, 2023
Summary
This study developed a health model for individuals with Down syndrome (DS), focusing on physical, social, and mental well-being. The refined model addresses unique health concerns for better health status measurement in DS.
Area of Science:
- Medical research
- Psychology
- Health sciences
Background:
- Down syndrome (DS) presents a distinct profile impacting physical, social, and mental well-being.
- Defining health in DS requires a specialized approach beyond general models.
Purpose of the Study:
- To develop and refine a conceptual model of health specifically for individuals with Down syndrome.
- To incorporate feedback from experts, parents, and individuals with DS into a syndrome-specific health framework.
Main Methods:
- Presented a proposed conceptual health model to expert panels and focus groups.
- Conducted videoconferencing sessions with parents and individuals with DS (ages 13-21) for feedback.
- Iteratively refined the model based on participant input and identified key themes.
Main Results:
- The refined model retains three core dimensions of health: physical, social, and mental well-being.
- Key constructs within these dimensions were modified based on feedback.
- Agreement was reached on the necessity of a syndrome-specific health model for DS.
Conclusions:
- A multi-dimensional, multi-construct model of health for Down syndrome has been established.
- This model focuses on relevant causal and effect indicators of health in DS.
- The conceptual model provides a foundation for developing a syndrome-specific health status measure.
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