Sickle Cell Disease: Challenges and Comfort in Providing Care By Family Physicians
Authors: Utuama Onameyore , Carter-Wicker Kitty , Herbert Jennifer , Gibson Robert , Kutlar Abdullah , Logan Ayaba , Kabongo Mbuyi Madeleine , Adamkiewicz Tom 
Published: October 2019

Abstract
Young adults with sickle cell disease (SCD) are 3 times more likely to die than their pediatric population. Transition into adulthood, limited access to specialist care, low socio-economic status, and a lack of training of family physicians (FPs), may contribute to complications leading to mortality. When compared to other chronic diseases, fewer specialized clinics and outdated evidence based guidelines exist for adults with SCD. This results in discontinuity in care, increased burden on FPs and poor clinical support. The dependence on primary care and the paucity of up-to-date evidence based management creates a situation where as-needed care is provided, but at a cost to disease management and quality of life. This study was designed to explore challenges faced by FPs in the care of patients with SCD. The survey was conducted at two family medicine residency programs: Morehouse School of Medicine (MSM, online) Atlanta and the Georgia Regents University (GRU, paper survey) Augusta, Georgia (2011-2012). Data collected included demographics, comfort with managing patients with SCD and challenges of caring for SCD patients using a 5-point Likert scale survey. Of 120 FP faculty, 75 (62%) responded. Demographics and background are listed in Table. In multivariate modeling, responds that reported seeing >=1 patients with SCD per month were more likely to report challenges (p=0.0014), and were more likely to answer correctly to 75% questions in a quiz (p=0.0131). Those that responded that pain was a challenge, were more likely to see >=1 patient per month with SCD, and reported overcoming challenges with specialist consultation (p=0.0089). Those that reported feeling mostly or completely comfortable treating patients with SCD were more likely to be male (p=0.0035), reported taking care of some patient with SCD (0.0029), residents (0.0198) and not aged 30-49 (p=0.0072). Given the current push for primary care, the role of FPs in providing continuity of care to patients with SCD, a chronic illness cannot be overemphasized. Like in previous recent studies, we report that pain management in patients with SCD was the greatest challenge reported by FPs. Sense of challenge and competency increased with exposure to patients with SCD. Perception of comfort was related to general exposure to patients with SCD, but was also influenced by other factors, including gender. To improve the competence and reduce the challenges faced by FPs in the management of SCD patients, we recommend: 1) development of primary care focused SCD guidelines, with an emphasis on transition of care. 2) Incorporation of SCD care and pain management into family medicine residency curriculum and Continuing Medical Education (CME) activities.
Table. n % Female 41 55 Age 18-29 years 10 13 Age 30-49 years 42 56 Age 50-69 years 23 31 MD/DO 70 93 Other 5 7 Faculty 44 59 Resident 31 41 Training in SCD, residency 42 56 Training in SCD, peer review journals 36 48 Reported taking care of patients with SCD 51 68 >= 1 patient with SCD per month 16 21 Mostly/completely comfortable treating SCD 17 23 Reported challenges in care of patients with SCD, any 32 43 Reported challenges in care of patients with SCD, pain 22 29

Disclosures
No relevant conflicts of interest to declare.