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Utilization, trust and satisfaction with health care in adult sickle cell disease patients
  • +4
  • Jacquelyn Baskin,
  • Anne Nord,
  • Dawn Canada,
  • Kelly Russell,
  • Payal Shah,
  • Thomas Coates,
  • Arch Mainous
Jacquelyn Baskin
University of North Carolina System
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Anne Nord
Children's Hospital Los Angeles Children's Center for Cancer and Blood Diseases
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Dawn Canada
Children's Hospital Los Angeles Children's Center for Cancer and Blood Diseases
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Kelly Russell
Children's Hospital Los Angeles Children's Center for Cancer and Blood Diseases
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Payal Shah
Children's Hospital Los Angeles Children's Center for Cancer and Blood Diseases
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Thomas Coates
Children's Hospital Los Angeles Children's Center for Cancer and Blood Diseases
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Arch Mainous
University of Florida Department of Community Health and Family Medicine
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Abstract

Introduction: Transition from pediatric to adult care for emerging adults with sickle cell disease (SCD) has been challenging due to limited availability of experienced adult providers and patient difficulty navigating the adult health care system. The purpose of this study was to determine among adults with SCD, healthcare utilization and their trust and satisfaction with their health care provider. Methods: We surveyed adult patients greater than 21 years old with SCD previously transitioned from Children’s Hospital Los Angeles. Assessments of provider trust and satisfaction were conducted along with health care utilization and the transition experience. Results: Of 31 participants, 61% and 68% identified having an adult primary care provider (PCP) and adult hematologist respectively. Increased satisfaction with care was associated with increased trust in the adult hematologist (r=0.72 p<0.001) and PCP (r=0.76 p=0.001) and improved communication (p< 0.001). Trust in their hematologist was greater than PCP (76.5 vs 64.2, p = 0.058). For SCD complications, 65% of participants visited the ED, 80% of whom had negative experiences including sub-optimal pain management. Regarding transition experience, 55% felt unprepared for adult care. Discussion: More than 30% of adult SCD patients transferred out of pediatric care are not receiving regular hematology care for their SCD, resulting in fragmented medical care. Increased trust in their adult hematologist and clear communication are associated with higher levels of satisfaction with care. These findings will be utilized to develop a transition program to improve patient preparation and build on partnerships with adult providers to improve long-term outcomes.