Hematologist Experiences and Perceptions of Outpatient Management of Adult Patients with Sickle Cell Disease

BACKGROUND:

Improvements in care have extended the life expectancy of patients with sickle cell disease (SCD) well into adulthood, increasing the need for hematologists who have clinical expertise in managing adult patients with SCD. Despite widely-cited shortage of clinicians and resources dedicated to this purpose, we lack data to support these needs. We sought to 1) quantify hematologists' experience in outpatient management of SCD and their comfort with treatments and complications, and 2) assess the need for and perceived importance of resources to care for these patients.

METHODS:

We performed an electronic survey of hematologists/oncologists from four states (Mississippi, Louisiana, Georgia, and Maryland) and the District of Columbia, with sites chosen that had 30% or higher of African American residents. 694 surveys were sent. Results from the initial 50 survey respondents are reported here. Outcomes were measured on a five-point Likert scale with comfort level ranging from very uncomfortable to very comfortable, importance ranging from not important to extremely important, and availability from no available resources to highly resourced (Figures 1, 2).

RESULTS:

Sixty percent (60%) of respondents identified as a general hematologist/oncologist, with the rest further specialized, and 4% identifying as a benign hematologist. Thirty-nine percent (39%) of respondents have treated no patients with SCD in the last three years of their current practice, with 12% of respondents not treating any patients with SCD in their current practice or during fellowship. Fifty-two percent (52%) of respondents felt comfortable ("somewhat comfortable" or "very comfortable") with the overall management of SCD in the outpatient setting (Figure 1), while 25% reported discomfort ("somewhat uncomfortable" or "very uncomfortable"). Discomfort with treatments ranged from 8% for folic acid to 50% for hematopoietic stem cell transplantation. Discomfort with managing complications was >30% for renal, neurologic, and ophthalmologic complications, and sexual/reproductive health.

When choosing from a list of eight pre-identified resources (Figure 2), 40% of the respondents chose social work/case management as the most important resource for improving management. Eighty-nine percent (89%) of respondents rated both social work/case management and pain management expertise to be very important or extremely important. However, 27% and 16% of respondents noted they had no available resources or were poorly resourced in these areas, respectively. Further, 72% and 73% rated infrastructure for transitions from pediatric care and community organizations to be very or extremely Important, but over 50% stated they had no available resources or were poorly resourced in these domains.

CONCLUSIONS:

Existing efforts focused on improving knowledge through clinical updates have increased provider comfort in managing SCD, but 25% of hematologists surveyed report being uncomfortable with the outpatient management of SCD. Respondents identified social work/case management and pain management as the most important resources needed in caring for patients with SCD. They also identified poor availability of resources, particularly for infrastructure for transitions from pediatric care, and for community organizations. These findings can help inform policy and procedures aimed at improving outpatient management of patients with SCD.