Primary Care Provider Use and Depression Screening Among Transitioning Adolescents and Young Adults with Sickle Cell Disease

Background Sickle cell disease (SCD) is a red blood cell disorder that impacts approximately 100,000 Americans. Adolescents and young adults (AYAs) with SCD face many barriers to successful transition from pediatric to adult care, including high rates of being uninsured, limited access to adult hematology and primary care providers (PCPs), and high rates of depression. Compared to people with SCD in other age groups, AYAs also have more healthcare costs, hospital visits, and greater rates of mortality. In other chronically ill populations, PCP use and well-managed depression are associated with improved outcomes. However, little is known about the prevalence of PCP use and how PCP use relates to mental health care and acute care use in this population near their transition. Thus, the objective of this study was to describe PCP use among transitioning AYAs with SCD and determine if being seen by a PCP in the year prior to transition was associated with receipt of depression screening and care and with decreased acute care utilization.

Methods This was a single-site, retrospective review of electronic medical records (EMR) of AYAs 18-21 years old with SCD (any genotype) at Nationwide Children's Hospital (NCH) who had their last pediatric hematology clinic visit between 2015-2019. Patients were excluded if they had ever received a bone marrow transplant or were incarcerated at the time of transition. Demographics, PCP use, depression screening using the validated patient health questionnaire-9 (PHQ-9), and acute care utilization (emergency room and/or hospitalization visits) during their last year of pediatric care were abstracted. Data were analyzed in SPSS. Pearson's correlations and chi-square tests were used to determine significant associations between target variables.

Results The final sample (N=56) included 32 (57%) females with mean age of 20.52 (SD=1.27). Of these, 55 (98%) were African/African American/Black, 1 (2%) was Arab; 37 (66%) had Medicaid insurance, 18 (32%) had private or commercial insurance, and 1 (2%) had military insurance. Overall, 51 (91%) patients had a PCP listed in their EMR, 30 (59%) had their PCP through NCH and 7 (23%) of these 30 had visited their PCP at least once in the year prior to their transition. Of the 30 with NCH PCP's, having ≥1 PCP visit in the year prior to transition was significantly associated with completing the PHQ-9 (p<0.01) and receiving a referral to psychiatry or therapy (p<0.01) compared to not having had a PCP visit. Patients who saw an NCH PCP in their final year of pediatric care had a mean of 5 acute care visits (SD= 3) compared to 6 visits (SD=8) among those without a visit to their PCP in their final year, this difference was not significant (p=0.440).

Discussion Our results suggest that many AYAs with SCD are not receiving primary care in the year prior to transition to adult care. We also identified that those with a PCP visit may be more likely to receive depression screening and referral for mental health care than those without a PCP visit. These findings suggest that PCPs may play a crucial role in depression diagnosis and management for transitioning AYAs with SCD, which is critical to address due to the impact that undiagnosed and/or untreated depression can have on transition and SCD outcomes. Thus, increasing access to PCPs who can provide essential preventive primary care and mental health screenings may have the potential to impact successful SCD transition. Our study was limited by its retrospective nature and small sample size and because PCP care that may have been provided outside of NCH setting could not be evaluated. Additional studies, with larger samples and across multiple centers, are warranted to better understand PCP use, depression diagnosis and management, and how visits with a PCP can augment and optimize management of SCD.

No relevant conflicts of interest to declare.