Medicine and Health Sciences Commons^™

Adapting Medical Guidelines To Be Patient-Centered Using A Patient-Driven Process For Individuals With Sickle Cell Disease And Their Caregivers, Robert M. Cronin, Tilicia Mayo-Gamble, Sarah-Jo Stimpson, Sherif M. Badawy, Lori E. Crosby, Jeannie Byrd, Emmanuel J. Volanakis, Adetola A. Kassim, Jean L. Raphael, Velma Mcbride Murry, Michael Debaun

Department of Health Policy and Community Health Faculty Publications

Background: Evidence-based guidelines for sickle cell disease (SCD) health maintenance and management have been developed for primary health care providers, but not for individuals with SCD. To improve the quality of care delivered to individuals with SCD and their caregivers, the main purposes of this study were to: (1) understand the desire for patient-centered guidelines among the SCD community; and (2) adapt guideline material to be patient-centered using community-engagement strategies involving health care providers, community -based organizations, and individuals with the disease.

Methods: From May–December 2016, a volunteer sample of 107 individuals with SCD and their caregivers gave …

2491: Parental Concerns About Child Participation In S Reflect A Need To Move Beyond Traditional Notions Of Trust And Race, Jennifer Cunningham-Erves, Tilicia Mayo-Gamble, Consuelo H. Wilkins

Department of Health Policy and Community Health Faculty Publications

OBJECTIVES/SPECIFIC AIMS: The objective of this study was to identify factors influencing parental willingness of adolescent participation in clinical trials. METHODS/STUDY POPULATION: We applied community engaged research principles to conduct a theory-based, cross-sectional study of parental willingness. Parents (N=307) were given a survey from November 2014 to April 2015. Factors influencing parental willingness were identified using binary logistic regression. SPSS version 22.0 was used to perform analyses, and p