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.