Assessing retention in care after 12 months of the Pediatric Development Clinic implementation in rural Rwanda: a retrospective cohort study

Background: In Africa, a high proportion of children are at risk for developmental delay. Early interventions are known to improve outcomes, but they are not routinely available. The Rwandan Ministry of Health with Partners In Health/Inshuti Mu Buzima created the Pediatric Development Clinic (PDC) model for providing interdisciplinary developmental care for high-risk infants in rural settings. As retention for chronic care has proven challenging in many settings, this study assesses factors related to retention to care after 12 months of clinic enrollment. Methods: This study describes a retrospective cohort of children enrolled for 12 months in the PDC program in Southern Kayonza district between April 2014-March 2015. We reviewed routinely collected data from electronic medical records and patient charts. We described patient characteristics and the proportion of patients retained, died, transferred out or lost to follow up (LTFU) at 12 months. We used Fisher's exact test and multivariable logistic regression to identify factors associated with retention in care. Results: 228 children enrolled in PDC from 1 April 2014-31 March 2015, with prematurity/low birth weight (62.2%) and hypoxic ischemic encephalopathy (34.5%) as the most frequent referral diagnoses. 64.5% of children were retained in care and 32.5% were LTFU after 12 months. In the unadjusted analysis, we found male sex (p = 0.189), having more children at home (p = 0.027), health facility of first visit (p = 0.006), having a PDC in the nearest health facility (p = 0.136), referral in second six months of PDC operation (p = 0.006), and social support to be associated (100%, p < 0.001) with retention after 12 months. In adjusted analysis, referral in second six months of PDC operation (Odds Ratio (OR) 2.56, 95% CI 1.36, 4.80) was associated with increased retention, and being diagnosed with more complex conditions (trisomy 21, cleft lip/palate, hydrocephalus, other developmental delay) was associated with LTFU (OR 0.34, 95% CI 0.15, 0.76). As 100% of those receiving social support were retained in care, this was not able to be assessed in adjusted analysis. Conclusions: PDC retention in care is encouraging. Provision of social assistance and decentralization of the program are major components of the delivery of services related to retention in care.