Health Care Utilization:
A summary of health care utilization can be found in Table 2. Of the
evaluable surveys, 61% of participants indicated they are currently
connected to an adult PCP and 68% are connected to an adult
hematologist with 35% of participants having both an adult PCP and
hematologist and only 6% not connected to any adult provider at the
time of the survey. Seventy-nine percent have seen their PCP and 81%
have seen their hematologist in the last 6 months. The patients
connected to an adult hematologist were older than the patients that
were not connected to an adult hematologist (mean difference 5 years,
p=0.0002). Type of SCD, location of participants’ residence based on zip
code, and time since last visit at CHLA were not found to be
statistically significantly associated with having an adult provider,
PCP and/or hematologist. Patients with both a PCP and a hematologist
were more likely to have hydroxyurea prescribed than those with a PCP
(91% vs 37.5% p=0.028) or hematologist (91% vs 40% p=0.028) alone.
Sixty-five percent of participants had visited the ED for a medical
concern related to their SCD in the preceding 6 months, 30% of whom had
at least 3 visits in that time-period. While only 40% of ED utilizers
ranked some level of dissatisfaction with their experience, 80%
provided negative statements regarding their ED care. Patients reported
delays and sub-optimal dosing in pain management, lack of provider
experience with SCD, and lack of trust of the ED provider in the
patients’ subjective report of pain symptoms as factors impacting their
experience. Fifty-two percent of SCD subjects required inpatient
hospitalization in the last 6 months with 25% admitted at least 3 times
during that time frame. Of those that required hospitalization, 50%
also had negative comments similar to those in the ED, although almost a
third commented on positive experiences mostly related to satisfaction
with the nursing care they received.
Connection to a PCP or a hematologist was not found to be significantly
associated with decreased ED (Pearson X2=0.23, p= 0.6
and Pearson X2=1.52, p=0.22 respectively) or hospital
visits (Pearson X2=2.50, p=0.11 and Pearson
X2=1.73, p=0.19 respectively). Moreover, neither the
trust scores nor the general satisfaction scores for their adult
providers were associated with differences in ED and hospital
utilization (p>0.1 results not shown). Type of SCD was not
associated with frequency of ED visits, but patients with either
hemoglobin SS or S-beta zero thalassemia, the more severe types of SCD,
were significantly associated with an increase in hospitalizations in
the preceding 6 months (Pearson X2 =4.04, p=0.050).