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).