The Pediatric Integrated Care Survey (PICS) in a multidisciplinary clinic for Down syndrome

Area of Science:

• Pediatric healthcare quality improvement
• Patient experience measurement
• Down syndrome clinical care

Background:

• The Pediatric Integrated Care Survey (PICS) is validated for assessing caregiver-reported integration and efficiency of pediatric care.
• Tracking patient experience during evolving care models, including the COVID-19 pandemic, is crucial for quality assessment.
• The Massachusetts General Hospital Down Syndrome Program utilizes PICS to monitor patient and family experiences.

Purpose of the Study:

• To establish a baseline using the PICS survey within a specialty Down syndrome clinic.
• To assess caregiver-reported experiences of integrated and efficient care over time.
• To identify specific areas for quality improvement in pediatric Down syndrome care.

Main Methods:

• Caregiver responses to the PICS survey were collected from February 2019 to June 2023 (n=62).
• Responses were scored using the standardized PICS user manual, and descriptive statistics were calculated.
• Scores were visualized using statistical process control charts to track monthly trends and shifts.

Main Results:

• The average PICS score was 12.0 (range 2-19) out of a maximum of 19.
• No significant shifts or trends in PICS scores were observed over the study period.
• Lowest scores, indicating areas for improvement, were related to care team advice, family impact, health-related stressors, and peer connection opportunities.

Conclusions:

• The PICS survey provides a valuable baseline for quality improvement initiatives in Down syndrome care.
• Findings highlight opportunities to enhance care integration by focusing on family support and interdisciplinary communication.
• This study establishes a foundation for future interventions aimed at improving the overall care experience for children with Down syndrome and their families.