Discussion:
Even though almost one third of patients in this cohort were not
connected to an adult hematologist, the overwhelming majority were
connected to some type of an adult provider and had visited their
provider in the prior 6 months. This represents a significant number of
patients not connected to a hematologist, which is cause for concern
considering PCPs lack of comfort and experience with the care of the
patients with SCD.9,10,23,24 Prior studies indicated
that increased distance to an SCD center was associated with increased
ED visits but decreased in-patient hospitalizations which may results
from fewer outpatient visits or lack of connection to an adult provider,
although this association was not replicated in our
study.14 Another difference is that the geographical
location of this cohort is relatively equally dispersed throughout Los
Angeles County (Figure 3) whereas prior studies completed in the Los
Angeles area demonstrated higher densities of SCD patients in the Metro
and Antelope Valley areas, also indicating this cohort may not be a
completely unbiased representation of patients with SCD in this
area.1,14
The rate of ED visits in this study is comparable to that reported in
the literature for adults with SCD. Wolfson et al demonstrated 69% of
the cohort had at least 1 ED visit in the prior
year.1,14 A more recent study indicates 50% of
subjects have more than 3 visits and at least a third with 6 visits in a
12-month period, which is higher than our sample.25There was a universal lack of satisfaction with ED care received by the
participants in this study, particularly due to negative experiences
related to suboptimal pain management and lack of providers’ experience
with SCD, leading to decreased trust in ED
management.11,26-29 Based on patient feedback, it
appears that patients might have improved ED or hospital visit
experiences if they are connected to appropriate adult care. These
negative ED experiences may also have a negative impact on patients’
perception of their transition experience.26,28
Others have observed that 25-50% of adults with SCD required at least
one hospitalization in the prior year as demonstrated
here.30 However, it was surprising that the frequency
of ED and hospital visits was not associated with lack of provider in
this study. The literature supports a connection between decreased
outpatient visits or poor comprehensive care with increased ED visits or
hospitalizations.14,31-35 The lack of an adult
provider or medical home contributes to fragmented, sub-optimal care,
leading to increased need for ED care or increased complications leading
to hospitalizations. One study documented the positive impact of a
shared care model on frequency of hospitalizations indicating the need
for both SCD directed comprehensive care in addition to general adult
primary care.9
The association between trust and satisfaction as well as increased
communication and access to care is consistent with other studies
utilizing the Trust in Physician scale, where trust was associated with
improved continuity with providers, adherence, and satisfaction with
care.20,36 Studies in SCD patients specifically have
also demonstrated this association between communication and trust,
which are essential quality of care indicators associated with a
successful transition of care.19,27 There was a trend
towards increased trust in the hematologist, which result from the
increased experience those providers have with these complex diagnoses.
However, contrary to results from the PISCES study, there was no
difference in satisfaction with care when comparing the PCP to the
hematologist.13 There is a strong emphasis on trust
because it is thought there is a compelling association between trust
and adherence to medical advice. The results of our survey suggest that
strategies for a successful transition include interventions to increase
the trust between patients, PCP, and the adult hematologist by involving
them in the transition plan.
More than 50% of participants were not satisfied with nor felt prepared
for transition to adult care. Participant feedback indicated that
facilitation of connection to an adult provider and the opportunity to
meet them prior to transfer of care would be an important component to
successful transition. This may improve the success of the transition of
care and foster increased trust in the new provider, an essential aspect
to transition.19,37 Additionally, increased perception
of preparedness was associated with higher levels of satisfaction and
trust in adult providers.
Participants suggested initiating transition education early to help
prepare AYA patients for this process. The feedback obtained will inform
the development of additional interventions incorporated into the
ongoing development of a transition program.