To understand retinopathy of prematurity (ROP) follow-up care for preterm very low-birth-weight infants (VLBW; <1500 g) in the context of the chronic care model and identify opportunities for improvement under accountable care organizations.
We conducted focus groups and interviews with parents (N = 47) of VLBW infants and interviews with neonatal intensive care unit and ophthalmologic providers (N = 28) at 6 sites in Massachusetts and South Carolina. Themes are reported according to consolidated criteria for reporting qualitative research guidelines.
Respondents perceived that legal liability and low reimbursement contributed to shortages of ROP providers. Some neonatal intensive care units offered subsidies to attract ophthalmologic providers or delayed transfers to institutions that could not provide ROP examinations and/or treatment. Sites used variable practices for coordinating ROP care. Even at sites with a tracking database and a dedicated ROP coordinator, significant time was required to ensure that examinations and treatment occurred as scheduled. Parents' ability to manage their children's health care was limited by parental understanding of ROP, feeling overwhelmed by the infant's care, and unmet needs for resources to address social stressors.
Under accountable care organizations, hospitals and ophthalmology practices should share responsibility for ensuring coordinated ROP care to mitigate liability concerns. To promote integrated care, reimbursement for ROP care should be bundled to include screening, diagnosis, treatment, and appropriate follow-up. Clinical information systems should be enhanced to increase efficiency and limit lapses in care. Self-management tools and connections to community resources could help promote families' attendance of follow-up appointments.