Online Program

Outcomes and Parent Perspective on a Novel Model of Sickle Cell Care Coordination: The Newborn Cohort Project

Tuesday, November 3, 2015

Alexandra Batts, MPH, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL
Robert Liem, MD, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago
Alexis A. Thompson, MD, MPH, Ann & Robert H. Lurie Children's Hospital of Chicago
background. There are limited published data on the Patient-Centered Medical Home (PCMH) care model in sickle cell disease (SCD), a complex chronic medical condition. Lurie Children’s Comprehensive SCD Program implemented a Newborn Cohort Clinic (NCC) in 2011 to optimize education, surveillance and care coordination for children with SCD. The NCC incorporates PCMH core concepts, emphasizing care coordination with primary care providers (PCP).

methods.A SCD parent handbook and care coordination tools were developed for the NCC. Clinical characteristics and outcomes were abstracted from medical records. A customized survey tool was used to assess parental satisfaction with the handbook and PCMH core concepts.

results. Currently, 66 subjects are evaluable. Mean age at first NCC visit was 3.7 months.  Mean age at Penicillin prophylaxis initiation was 2 months. Of patients > 24 months old, 30/43 (70%) received a Pneumovax vaccine, 21/24 (86%) by age 36 months. 84% underwent transcranial Doppler (TCD) by age 36 months. There were 265 ED visits by 51 patients, of which 75% were for fever, pain or respiratory symptoms, resulting in 134 hospitalizations. 73% of parents were very satisfied with the handbook, 80% were very satisfied with NCC care coordination. Parents reported high satisfaction in all PCMH domains tested.

conclusion. Results support successful NCC implementation to facilitate care coordination in young SCD patients, including high parental satisfaction and timely preventive care.  Enhanced education and surveillance may improve adherence to evidence-based SCD guidelines, however, this may not mitigate against high utilization of healthcare services by this medically high-risk population.

Learning Areas:

Chronic disease management and prevention
Clinical medicine applied in public health
Implementation of health education strategies, interventions and programs
Public health or related research

Learning Objectives:
Evaluate implementation of the Newborn Cohort Clinic as an innovative care model for young children with special health care needs like those with sickle cell disease. Assess early clinical outcomes and parental satisfaction among Newborn Cohort Clinic participants.

Keyword(s): Maternal and Child Health, Chronic Disease Management and Care

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have six years of experience working in maternal and child health. I completed my MPH thesis on the Newborn Cohort Clinic and have spent the following years working with the Newborn Cohort Clinic as the project coordinator for the Hematology Program at the Ann & Robert H. Lurie Children's Hospital of Chicago.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

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