source: American Society of Pediatric Hematology/Oncology

year: 2017

authors: Jacquelyn Baskin, Anne Nord, Dawn Canada, Kelly LC. Russell, Payal Shah, Thomas D. Coates, Arch G. Mainous III

Background:
Transition from pediatric to adult centered care for emerging adults with sickle cell disease (SCD) has previously been unsuccessful due to lack of connection to adult providers with experience with SCD, physician mistrust, poor patient preparation, and difficulty navigating the adult health care system. The resulting gaps in medical care lead to decreased out-patient visits and increased Emergency Department (ED) visits and hospitalizations, contributing to fragmented care and poor outcomes.

Objectives:
To assess barriers that adults with SCD face when accessing adult care, satisfaction and trust with medical providers, and health care utilization.

Results:
Only 62% of the 34 survey participants, ages 22-39 years, identified having an adult PCP and/or hematologist. Patients’ general satisfaction with care increased as their trust increased in both their adult hematologist (p=0.001) and PCP (p<0.001). Patients had greater trust in their hematologist (mean score 79.4 vs 65.1, p = 0.0376) and trended towards improved general satisfaction with care (mean score 3.8 vs 3.2, p=0.128) when compared to their PCP. For complications related to SCD, 62% of all participants had been to the ED and 50% had been hospitalized in the previous 6 months. Of those utilizing the ED, 60% had negative comments regarding their care, including delays and sub-optimal dosing in pain management and lack of provider experience with SCD. Regarding their transition experience, 50% were dissatisfied and more than 50% reported they were not prepared for adult care.

Conclusion:
Almost 40% of patients are not receiving regular medical care for their SCD with a significant portion relying on emergency departments, which can lead to fragmented medical care. There was a higher level of trust and general satisfaction with adult hematologists, which may reflect patients’ confidence in their specialists’ ability to manage their disease. Based on participant feedback, medical care improved when their adult provider was involved in their hospital care, indicating the importance of the connection with an adult provider familiar with their disease, which can lead to improved long-term outcomes.

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