As a part of Phase I funding CAPriCORN was tasked with developing disease cohorts on which to conduct research. CAPriCORN was able to develop five cohorts around different diseases: Weight Management, two common diseases (Asthma and Anemia), and two rare diseases (Recurrent Clostridium difficile and Sickle Cell Disease). Each cohort committee completed recruitment and are completing data analysis. Further information and results will be shared here upon completion of this part of the cohort work.
The Anemia Cohort Committee has been able to identify patients with anemia from various data sources. A survey was developed by the Anemia workgroup to measure fatigue among patients and to follow-up 30 days after hospitalization. Over 400 patients were fully characterized for patient reported outcomes at the University of Chicago site. Results suggest promising relationships between transfusion and reduction of fatigue among patients who have low hemoglobin levels and high levels of fatigue.
The Asthma Cohort Committee successfully identified children and adults with asthma from the electronic health records. The Asthma group engaged community partners of the Respiratory Health Association and Chicago Asthma Consortium in the development of a survey instrument to better describe asthma in the community. This cohort obtained information to 1) evaluate demographic and health characteristics associated with asthma control and high healthcare utilizers and 2) compare characteristics of asthma disease and demographics between obese and non-obese subjects with asthma. The Asthma Committee charged with this study recently published A computable phenotype for asthma case identification in adult and pediatric patients: External validation in the Chicago Area Patient-Outcomes Research Network (CAPriCORN)
The Recurrent Clostridium difficile Infection (RCDI) committee was able to identify RCDI cases using electronic health records and developed a survey instrument to collect data on patient symptoms, experiences, and impact of having had RCDI, the first survey of its kind. This cohort work led to a publication describing the impact of PCDI on patients, The Impact of Recurrent Clostridium difficile Infection on Patients’ Prevention Behaviors. The Peggy Lillis Memorial Foundation, the only national advocacy group devoted specifically to CDI, was a partner in this work. The RCDI committee has discussed projects to examine the long term impacts of RCDI on healthcare utilization and costs, and development of chronic conditions.
The Sickle Cell Disease Cohort Committee has had success with community engagement and submission of new projects. This cohort has strong community engagements with the Sickle Cell Disease Association of Illinois (SCDAI) and Have a Heart for Sickle Cell Anemia Foundation (HAH) at the state and local level, and the Sickle Cell Disease Association of America (SCDAA) at the national level. The cohort submitted three proposals to PCORI, and two were invited to participate after the Letter of Intent. This cohort also characterized an adolescent and young adult sub-cohort who demonstrates high rates of morbidity, mortality, and healthcare needs for specific interventions.
This cohort has successfully been able to identify and characterize adult and pediatric patients across our institutions. This cohort participated in the PCORnet Obesity Observational Research Demonstration Projects on the long-term outcomes of bariatrics surgery and antibiotics use in children. This cohort submitted applications that propose to examine obesity-related outcomes. The cohort continues to plan proposals to test the effectiveness, in real-world settings, of a simple provider prompt to implement a “small change” approach to the prevention of excessive weight gain during appropriate patient encounters.