Announcing the Down Syndrome Health Measure
- Stephanie Santoro (Massachusetts General Hospital)
Correspondence: ssantoro3@mgh.harvard.edu
Background: No validated measures for health status of individuals with Down syndrome existed – until now. General population measures cannot be used because Down syndrome does not have the same risk profile as the general population with respect to medical comorbidities, mental health conditions, social factors, and medical costs.
Research question: This study aimed to establish and validate a health measure designed specifically for individuals with Down syndrome.
Methods: We conducted concept elicitation through expert and patient panels and focus groups to develop an initial item pool which was evaluated through cognitive interviews to create a draft instrument. We recruited caregivers of individuals with Down syndrome age 0–21 to complete an electronic survey. Principle components and principle factor analysis with oblique rotation identified item grouping. Cronbach’s alpha measured internal consistency. Intraclass correlation coefficients (ICC) assessed test-retest reliability.
Results: We received 542 complete survey responses from a national sample, 270 retest responses, and surveys from 208 teachers and 102 primary care physicians. Final confirmatory factor analysis with oblique rotation resulted in 7 scales across 3 domains (25 items) with acceptable to excellent internal consistency and moderate to excellent test-retest reliability. The 7 subscale scores and the total score each correlated strongly with external measures (p < 0.001). Additionally, in subsequent research analyzing responses, we have found that DSHM scores correlated with some of the bothersome and impactful aspects of health and with some aspects of daily activities, exercise and endurance.
Conclusions: We present the Down Syndrome Health Measure (DSHM): a 25-item caregiver Down syndrome health measure consisting of 3 domains and 7 scales with demonstrated acceptable psychometric properties. This measure can be used to better understand and improve the health of children and adolescents with Down syndrome.
In this individual presentation, I will review the past research to develop and validate the DSHM as well as share subsequent comparing the DSHM to aspects of health. I'll review how the DSHM can now be used and plans for future research. I will also share how attendees can access and take the DSHM to try it out themselves.
