Megie Okumura, MD, MAS
|School||UCSF School of Medicine|
|Address||3333 Calif. St,Laurel Heights |
San Francisco CA 94118
|New York||M.D.||School of Medicine||2000|
My research is aimed at studying and formulating interventions that will address barriers and facilitators to chronic illness care for children with special health care needs as they transition from the pediatric to adult health care setting. I am dual-board certified in general pediatrics and internal medicine, and therefore have a unique perspective on the health care issues affecting the entire age spectrum of patients with childhood-onset chronic illnesses. My research and professional goal is to improve health care quality for youth and young adults with chronic conditions as they transition from pediatric to adult health care. Ultimately, I intend to apply my research to chronic illness care across the lifespan.
My current research program focuses on studies that will inform ways to improve the quality of health care among adolescents and young adults with chronic conditions. Diseases that affect children and young adults have a wide spectrum of process and severity. I am interested in identifying how best to create health care delivery systems and organizational practices that are adaptable to the needs of individuals who have a heterogeneous group of chronic diseases. Despite the variation in disease specific treatments, most children and young adults with medically complex conditions require similar general chronic health care management. For example, cystic fibrosis, which affects largely the lung and endocrine systems, and sickle cell disease, which affects the hematologic system require very different treatment regimens. Yet both of these diseases require care coordination across numerous specialists, require nutrition support, and require an organized continuous health care delivery system to ensure high quality care. Individually, these types of severe childhood disease may be rare, but in aggregate they make up a significant proportion of the chronically ill in children and young adults. Therefore, focusing on improving quality for a single disease process is insufficient to address the chronic illness care needs of children and young adults. As children, these individuals are categorized as children with special health care needs (CSHCN). CSHCN are defined by the Maternal and Child Health Bureau as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” Eventually, these children will age out of pediatric health services. I will refer to this heterogeneous group as youth and young adults with special health care needs (YSHCN).
In order to best design programs that can help these YSHCN, my research has focused on epidemiologic studies of health care utilization and health care needs. I have utilized large secondary datasets such as the Kid Inpatient Dataset, the National Survey of Children’s Health as well as the National Survey of Children with Special Health Care Needs. I have also performed primary data collection through a survey that investigated physician comfort in treating YSHCN. I have received a grant by the Academic Pediatric Association to perform a qualitative study to investigate barriers and facilitators that patient’s face as the transition from pediatric based health care in to the adult health care setting. This prior work has led to my career development award funded by AHRQ. My career development award focuses on studying barriers and facilitators to chronic illness management during the transitioning period for YSHCN. Using the findings, my goal is to design interventions that will improve chronic illness management and continuity of care for YSHCN. For example, I am evaluating the implementation of a health advocacy program targeted to improving care for transition aged adolescents and adults with developmental disabilities through a community-agency partnership. I am planning a future R-01 that would integrate community-based programming with health clinics to improve chronic disease management to YSHCN. Through my studies, my ultimate goal is to form evidence based strategies to improve chronic illness delivery to YSHCN.
Implementation Science, Children/youth, Persons with physical disability, Children with Special Health Care Needs, Adolescents and young adults, Clinic, Community-based organization, Health coaches, Education, Diabetes, Cystic Fibrosis, Developmental Disabilities, Children with Special Health Care Needs, Pediatric to Adult Health Care Transitions, Mentoring junior faculty or trainees, Interdisciplinary research collaboration, Implementation & dissemination science listservs, quality of care delivery for children with chronic diseases, transition from pediatric to adult care, community based participatory research quality of care, survey methods, secondary data analyses, qualitative methodology, implementation and dissemination sciences