Research Spotlight: Caregiver Perception of Care Integration in a Single Specialty Clinic for Down Syndrome

Stephanie Santoro, MD, Director of Quality Improvement Research for the Down Syndrome Program at Mass General for Children, is senior author of a recent study in the American Journal of Medical Genetics, Part C, The Pediatric Integrated Care Survey (PICS) in a Multidisciplinary Clinic for Down Syndrome.

What Question Were You Investigating with this Study?

How do caregivers view the care integration in a single specialty clinic for Down syndrome?

What Methods or Approach Did You Use?

The Pediatric Integrated Care Survey (PICS) is validated for use to measure the caregiver reported experience of integration and efficiency of all the aspects of their child. We began using the PICS survey to track changes in the patient experience, including throughout changing models of care during the COVID-19 pandemic.

What Were the Results?

From February 2019 to June 2023, 62 responses from caregivers of individuals seen in the Massachusetts General Hospital Down Syndrome Program completed the PICS. Responses were scored using the standardized PICS user manual, and descriptive statistics were completed.

The raw scores and composite monthly scores of the PICs were graphed in statistical process control charts. The average PICS score was 12.0 (range 2-19) out of a maximum score of 19; no shifts or trends were seen.

Items with lowest scores indicated greatest opportunities for improvement related to: advice from other care team members, impact of decisions on the whole family, things causing stress or making it hard because of child's health, and offering opportunities to connect with other families.

What’s Next?

Studying the PICS in a specialty clinic for Down syndrome has established a baseline for future quality improvement work and interventions to increase care integration.

Paper Cited:

Karri, S., Harisinghani, A., Cottrell, C., & Santoro, S. L. (2024). The Pediatric Integrated Care Survey (PICS) in a multidisciplinary clinic for Down syndrome. American journal of medical genetics. Part C, Seminars in medical genetics, 196(1), e32067. https://doi.org/10.1002/ajmg.c.32067

About the Massachusetts General Hospital

Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The Mass General Research Institute conducts the largest hospital-based research program in the nation, with annual research operations of more than $1 billion and comprises more than 9,500 researchers working across more than 30 institutes, centers and departments. In July 2022, Mass General was named #8 in the U.S. News & World Report list of "America’s Best Hospitals." MGH is a founding member of the Mass General Brigham healthcare system.