The Down Syndrome Health Measure (DSHM) is a caregiver-report measure of health status for individuals with Down syndrome age 0-21 years.
Learn about research to develop the Down Syndrome Health Measure (DSHM)
What is health to you?
What defines how healthy you are?
What are indicators of health?
What research was done to create this measure?
Developing a Down Syndrome Health Instrument
From 2020-2025, I completed a K23 award from the NIH, to develop a novel, validated measure of the health of children and adolescents with Down syndrome as perceived by their caregivers. I completed this work at Massachusetts General Hospital.
1. We got input from stakeholders: experts, individuals with Down syndrome, and their caregivers
2. We created a conceptual model of health in Down syndrome
3. We made survey questions and tested those.
In the future, I plan to build on this work and develop a patient-reported outcome completed by individuals with Down syndrome.
Conceptualizing health of individuals with Down syndrome