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.
Future Work!
In the future, I plan to build on this work and develop a patient-reported outcome to be completed by individuals with Down syndrome.
Conceptualizing health of individuals with Down syndrome
Contact me if you would like to collaborate on research related to health in Down syndrome, or other genetic syndromes.
“Thank you! This was valuable to think through each of the areas and consider how [my child] is doing. I'm deeply grateful for your research: having our daughter's abilities and health measured against that of neurotypical peers is frustrating, unhelpful, and depressing. I'm so grateful for research like this that is substantially improving our lives. Many thanks!”
“I think it was easy to understand and took roughly the amount of time that you said it would, so I think it was pretty good.”
What participants told us about the DSHM.
“Taking this survey made me realize how much my son's health has improved as he matured. From birth … we had lots of doctor and therapy appointments and now … we have very few. I had to remind myself to answer based on his age now and not the past. Very insightful [to] me.”
“It was worded really well. I especially respected your way of opening up more difficult topics such as how many people can struggle with various things, etc.”
