Utilization, trust and satisfaction with health care in adult sickle
cell disease patients
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.