Patient outcomes for sickle cell disease with support staff-driven interventions: A scoping review

Abstract Background: Sickle cell disease (SCD) is a chronic condition characterized by progressive organ dysfunction and significant early mortality. Care is often fragmented due to the complexities of coordinating numerous outpatient visits, managing health maintenance, and responding to recurrent acute care episodes. These challenges are further exacerbated by persistent health disparities that limit access to consistent, high-quality, comprehensive care. Clinically, support staff play a vital role in enabling providers to focus on medical decision-making by reducing the burden of care coordination and addressing social determinants of health. While some pediatric programs provide comprehensive medical home models, these integrated services often diminish in adult care, resulting in disjointed management across emergency, primary, and specialty settings. Essential components of a comprehensive adult SCD center include a social worker and patient navigator, as well as adjunct roles such as a pharmacist and a clinic manager. Although multidisciplinary chronic care models are widely endorsed, the adult SCD setting often lacks the infrastructure, reimbursement, and justification due in part to limited high-quality evidence to support and sustain these roles. Objective: Given challenges with justifying a multidisciplinary SCD team at many institutions, the goal of this scoping review is to summarize and synthesize existing evidence on the impact of ambulatory support staff on patient outcomes. Methods: We conducted a review of PubMed, Embase, and PsycINFO (2005–2025) for peer-reviewed articles from Western countries using search terms for sickle cell disease AND chronic care model OR comprehensive care OR integrated care OR patient navigation OR community health worker OR care coordination OR social worker. After screening 1037 records, we included 9 studies that evaluated non-physician or non-advanced practice provider support staff who conducted outpatient or transitional SCD interventions with measurable outcomes related to healthcare utilization, medication adherence, or health maintenance screening. Eligible studies included only analytical studies, both observational and experimental, that evaluated patient outcomes. Studies focusing on inpatient targeted interventions, descriptive studies without patient outcomes, reviews, and poor-quality ratings assessed by NHLBI tools were excluded. Results: Of the 9 studies, the types included were randomized controlled trials (RCTs) (n=5) and observational studies [retrospective pre-post (n=2), retrospective cohort (n=1), and cross-sectional (n=1)]. Six studies focused on pediatric populations and 6 on adolescents/adults. Three RCTs included a community health worker (CHW) as part of the intervention to increase hydroxyurea (HU) adherence through education and/or reminders, of which 2 showed no sustained improvement in HU adherence, while 1 showed increased HU prescription fills without corresponding laboratory improvements. Two RCTs targeted comprehensive care coordination with CHWs, peer coaches and/or mental health services on several chronic disease states. They reported no significant improvement in emergency department visits or hospital readmissions, even when focusing on SCD alone. In 2 observational studies, the implementation of clinic-based support staff with either a CHW providing care coordination or a pharmacist with authority to educate and order medications/vaccines showed improvements in completion of health maintenance screening, immunizations, and HU dose escalation. A non-medical research personnel member doing telephone outreach every 3 months improved clinic follow-up and completion of transcranial doppler screening. A transition nurse coordinator co-located in both the pediatric and adult clinics improved adult clinic visit retention. Conclusion: There is limited evidence evaluating the impact of support staff on patient outcomes in SCD care. Among the few RCTs conducted, most did not demonstrate significant benefit to acute care utilization or HU adherence, with 1 exception for improved HU refill rates. This review highlights the need for future RCTs to examine outcomes related to care coordination, such as retention in care and completion of health maintenance. High-quality evidence from rigorous studies will be essential to inform policy and funding decisions that support integration of these critical team members into SCD care.