The Family CIRCLE research study is learning from 700 families of children with special healthcare needs. Families will complete five surveys that explore experiences related to being a caregiver of a child with special healthcare needs over two years. In addition to focusing on personal experience, the study also collects valuable information on the frequency of children’s doctor visits, emergency department visits, and overnight hospital stays.
Project Abstract
The Family CMC Innovation Research Cohort with Longitudinal Evaluation (Family CIRCLE) was established to 1) address themes in knowledge about health care access, service utilization, child well-being, and caregiver experiences for children with medical complexity, and 2) create a national infrastructure for future collaborative research. Family CIRCLE is one of the largest multi-site longitudinal cohorts of children with medical complexity and their caregivers in the United States. By combining repeated caregiver surveys, electronic health record data, and self-reported qualitative family experiences, the study provides a comprehensive resource for researchers and policymakers who hope to improve care for CYSHCN.
Family CIRCLE is a prospective, observational, longitudinal cohort study conducted across nine academic medical centers and affiliated health systems in the United States. Eligible participants include caregiver-child dyads in which the child has at least one complex chronic condition and receives care at a participating site. Recruitment occurred from October 2023 through April 2024 using electronic health record-based identification and in-clinic recruitment strategies. Participants (n=718) complete electronic REDCap surveys every six months over a 24-month follow-up period, with complementary electronic health record data collection. Survey domains include child health and functional status, child quality of life, health care utilization, home health access and quality, educational experiences, social determinants of health, caregiver well-being and self-efficacy, care coordination, and perceptions of health care and school environments. Caregivers with lived experience partnered with investigators throughout study design, implementation, interpretation, and dissemination. Longitudinal data collection will continue through 2027.
Methods
Family CIRCLE is a prospective, observational, longitudinal cohort study conducted across nine geographically diverse academic medical centers and affiliated health systems in the United States. Eligible participants were caregiver-child dyads in which the child (0–15.5 years) had at least one complex chronic condition and received care at a participating site. Children with only a neonatal diagnosis, undergoing active cancer treatment, or transplant recipients were excluded. Recruitment occurred between October 2023 and April 2024 using electronic health record-based identification and in-clinic recruitment, with enrollment and survey administration completed electronically through REDCap. Participants complete surveys every six months over a 24-month follow-up period, with linked EHR data collected concurrently.
Implications
The Family CIRCLE study is important because it addresses a critical gap: longitudinal, multi-site evidence on a wide range of topics that impact children with medical complexity (CMC) and their families. Family CIRCLE assists researchers in advancing measurement tools for home-based care, building reusable multi-site infrastructure, and modeling strong patient/public involvement. Family CIRCLE supports policymakers in yielding generalizable evidence to guide recovery investments, strengthening care coordination and transition services, and targeting equity-focused interventions addressing social determinants.
Timeline
Participants were recruited between October 15, 2023 to April 30, 2024. Enrolled caregiver/child dyads complete five surveys plus EHR data extracts every 6 months over a 24-month follow-up period, with data collection concluding in 2027.
Design
Family CIRCLE is a nine-site, prospective, observational, longitudinal cohort study of caregiver/child dyads.
Key Findings
The study’s importance and design are well documented, but key empirical findings are pending and will emerge in upcoming manuscripts as longitudinal analyses are completed. Initial findings address caregiver self-efficacy, preventable hospitalizations, experiences with health insurance, and discrimination in healthcare settings.
Deliverables
- Dataset including survey, qualitative, and EHR data that spans 2+ years of observations.
- Publications, presentations
Contact person
Amanda Gatewood, MPH, PhD, akgatewood@pediatrics.wisc.edu
Publications
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children with Special Health Care Needs Research Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.