Designing a Multistakeholder Collaboration to Improve Preventive Care for Children With Sickle Cell Anemia

J Pediatr Hematol Oncol. 2020 Apr;42(3):e152-e158. doi: 10.1097/MPH.0000000000001666.


Newly developed measures of health care quality for children with sickle cell anemia (SCA) have revealed significant performance gaps in recommended care. Historically, health systems, Medicaid health plans, and state Medicaid programs have not partnered with patients and families to improve SCA care delivery. We organized 2 novel multistakeholder design meetings to identify potential interventions to deliver high-quality preventive care for children with SCA. Invitees included patients with SCA, families, and representatives from pediatric hematology clinics, Medicaid health plans, community organizations, and a state Medicaid program. Participants identified some barriers to care through presentations and facilitated discussions. Over 35 potential interventions and 6 drivers of high-quality SCA preventive care delivery were organized into a key driver diagram. Many barriers to SCA care delivery could be addressed by Medicaid health plan resources to support members with chronic disease; however, these resources are infrequently used in the pediatric SCA population. Bridging gaps between stakeholder groups identified many potential interventions to improve SCA preventive care delivery at all levels of the health care system. Similar multistakeholder discussions may be useful for other communities interested in improving preventive care for children with SCA or other chronic pediatric diseases.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Anemia, Sickle Cell*
  • Child
  • Congresses as Topic
  • Delivery of Health Care / organization & administration*
  • Humans
  • Intersectoral Collaboration*
  • Medicaid
  • Preventive Medicine / organization & administration*
  • United States