Dr. Raphael is an Assistant Professor of Pediatrics at Baylor College of Medicine (BCM) and a general pediatrician. He is also an investigator in the Clinical Epidemiology and Outcomes Program of the Section of Health Services Research at BCM. His long-term goal is to become an independent, patient-oriented investigator focusing on improving adherence to preventive care for minority children with chronic conditions, with an emphasis on children with sickle cell disease (SCD). The applicant will accomplish this goal through patient-oriented research, formal mentoring by recognized experts, such as Drs. Thomas Giordano and Lovell Jones, and advanced, graduate-level coursework in behavioral science, qualitative methods, and advanced research methods. The applicant's research goal will be to develop a parent navigator program for parents of school-age children with SCD in order to improve adherence to preventive care and overall retention in care. Patient navigation is a barrier focused intervention that utilizes health workers in order to help patients overcome barriers to receiving timely health care services. This research project will use navigation to address major obstacles to the receipt of high quality care and improved health outcomes for children with SCD. The overall hypothesis is that modifiable parental factors, including information, motivation, and behavioral skills influence adherence to preventive care for children. Understanding of the relationships between these factors and adherence can, in turn, be utilized to design an innovative, culturally appropriate, and parent-focused intervention founded on patient navigation principles. The applicant will develop a navigator program based on a longitudinal study, parent focus groups, and input from an expert panel. The first specific aim is to assess in a longitudinal study of children with SCD the relationship between patient-related factors, including IMB measures, barriers, and facilitators, and patient adherence to preventive care and health resource utilization. The second specific aim is to develop a 6-month parent navigator program for parents of school-age children with SCD. The third specific aim is to test the feasibility of a 6- month pilot parent navigator program on health outcomes, including adherence to SCD preventive care visits, health service use, and health-related quality of life. This research will expand upon the principal investigator's current skills and past work by taking advantage of an outstanding research and mentoring environment, allowing him to acquire new and refined skills in the design and performance of patient oriented clinical research, so that he will be an independent researcher improving the health of children with SCD . Dr. Raphael's proposed activities will provide him with a special capacity to utilize new insights into the behavioral and motivational elements of disparities, and therefore ensure that the usual focus on adherence is truly responsive to motivational and behavioral characteristics.

Public Health Relevance

This research will provide new information regarding adherence to preventive care for children with sickle cell disease. It will utilize this insight to develop a culturally tailored, parent-focused program to improve adherence among this population. This approach may be used as a model for improving the care of minority children with other chronic conditions.

National Institute of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Mentored Patient-Oriented Research Career Development Award (K23)
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Special Emphasis Panel (ZHL1)
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Werner, Ellen
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Baylor College of Medicine
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Rattler, Tiffany L; Walder, Annette M; Feng, Hua et al. (2016) Care Coordination for Children With Sickle Cell Disease: A Longitudinal Study of Parent Perspectives and Acute Care Utilization. Am J Prev Med 51:S55-61
Raphael, Jean L; Richardson, Troy; Hall, Matt et al. (2015) Association between Hospital Volume and Within-Hospital Intensive Care Unit Transfer for Sickle Cell Disease in Children's Hospitals. J Pediatr 167:1306-13
Raphael, Jean L; Cooley, W Carl; Vega, Amanda et al. (2015) Outcomes for Children with Chronic Conditions Associated with Parent- and Provider-reported Measures of the Medical Home. J Health Care Poor Underserved 26:358-76
Lion, K Casey; Raphael, Jean L (2015) Partnering health disparities research with quality improvement science in pediatrics. Pediatrics 135:354-61
Lopez, Michelle A; Cruz, Andrea T; Kowalkowski, Marc A et al. (2014) Trends in hospitalizations and resource utilization for pediatric pertussis. Hosp Pediatr 4:269-75
Raphael, Jean L; Batsell, Richard R; Kowalkowski, Marc A et al. (2013) Trends in Child Health Insurance Coverage: A Local Perspective. J Appl Res Child 4:
Raphael, Jean L; Tran, Xuan G; Mueller, Brigitta U et al. (2013) Integration of Administrative Data and Chart Review for Reporting Health Care Utilization Among Children With Sickle Cell Disease. Sage Open 3:2158244013482470
Raphael, Jean L; Rueda, Anna; Lion, K Casey et al. (2013) The role of lay health workers in pediatric chronic disease: a systematic review. Acad Pediatr 13:408-20
Raphael, Jean L; Butler, Ashley M; Rattler, Tiffany L et al. (2013) Parental information, motivation, and adherence behaviors among children with sickle cell disease. Pediatr Blood Cancer 60:1204-10
Raphael, Jean L; Rattler, Tiffany L; Kowalkowski, Marc A et al. (2013) The medical home experience among children with sickle cell disease. Pediatr Blood Cancer 60:275-80

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