University of Rochester, Rochester, New York, USA.
Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.
Am J Med Genet C Semin Med Genet. 2024 Mar;196(1):e32067. doi: 10.1002/ajmg.c.32067. Epub 2023 Oct 31.
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. 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. Studying the PICS in a specialty clinic for Down syndrome for the first time has established a baseline for future quality improvement work and interventions to increase care integration.
儿科综合护理调查（PICS）已通过验证，可用于衡量护理人员对其儿童所有方面的整合和效率的体验。我们开始使用 PICS 调查来跟踪患者体验的变化，包括在 COVID-19 大流行期间不断变化的护理模式期间。从 2019 年 2 月到 2023 年 6 月，麻萨诸塞州综合医院唐氏综合征项目的 62 名护理人员的家属完成了 PICS 调查。使用标准化的 PICS 用户手册对回答进行评分，并完成描述性统计。使用统计过程控制图绘制了 PICS 的原始分数和综合月度分数图。PICS 的平均得分为 12.0（最高分为 19）；未观察到变化或趋势。得分最低的项目表明在以下方面有最大的改进机会：来自其他护理团队成员的建议、决策对整个家庭的影响、因孩子的健康而导致的压力或困难的事情、以及提供与其他家庭联系的机会。首次在唐氏综合征专科诊所研究 PICS 为未来的质量改进工作和增加护理整合的干预措施奠定了基础。
