Newborn Screening Follow-up
Part of the CSCCN is to enhance the newborn screening follow-up process by assuring that all families of infants identified with sickle cell trait are contacted and notified of the newborn’s screening test results.
Patient Participation and Feedback
Patients of the Sickle Cell Treatment and Research Center have the option to participate in community focus groups as well as in-depth face-to-face interviews about quality of life, patient satisfaction and medical treatment.
Patient involvement is encouraged in all activities of the CSCCN.
Health Professional and Patient Education
The CSCCN will serve as a portal to information regarding regional providers, community, and educational support services for providers, patients and families.
Coordinated education and training relevant to sickle cell disease will be made available for participating health professionals. Sickle cell disease education will also be promoted amongst trainees in primary care fields in an effort to develop future medical care leaders who address health care disparities.
Educational materials are available in English and Spanish.
Collection and Evaluation of Outcomes
The CSCCN will establish and provide sickle cell disease treatment best practices guidelines for children and adults with sickle cell disease.
In collaboration with other networks and RTI International, the technical and evaluation support for the SCDTDP, the CSCCN team will collect formal outcomes data including quality of life, patient satisfaction, reduction in morbidity and mortality and the impact of best practices guidelines on patient care.
Coordinated Resources to Enhance Clinical Care
The CSCCN will identify and support sites of primary care and emergency department that serve children and adults with sickle cell disease by establishing partnerships with a variety of community-based systems, including University of Colorado affiliates that serve medically indigent. In addition, the CSCCN will provide a framework for effective transitioning services from pediatric to adult services and for in-patient to out-patient services.
Patient-Centered Model of Care
The CSCCN promotes a care model centered on a health care setting that facilitates partnerships between individual patients, their personal physician and when appropriate, the patient’s family. The patient-centered medical home essentially ensure that every patient has: 1) An ongoing relationship with a primary care physician; 2) Care provided by a physician-directed team; 3) Coordinated and integrated services across all aspects of health care; 4) Quality and safety; 5) Enhanced access; and 6) Payment that appropriately recognizes the added value of patient-centered medical home (fee-for-service, care management fee and pay for performance).
Engagement of Community Support Groups
The CSCCN will coordinate genetic/hemoglobinopathy counseling plans and lab testing through the creation of sickle cell trait follow-up clinics for individuals with sickle cell disease and families of infants identified by the newborn screening program. The community support groups will also conduct broader sickle cell trait outreach to the general community in Colorado. The community support groups (in Denver and Colorado Springs) will also conduct ongoing needs assessments throughout the course of the four-year grant.