Role of tele-medicine in retinopathy of prematurity screening in rural outreach centers in India – a report of 20,214 imaging sessions in the KIDROP program

Summary

Middle-income countries such as India are suffering from the third epidemic of retinopathy of prematurity (ROP). Improved survival and lower infant mortality rates have resulted in an increased number of preterm survivors in rural areas that unfortunately lack ROP specialists. We report our experience of a public–private partnership in rural India of an ongoing telemedicine program Karnataka Internet Assisted Diagnosis of Retinopathy of Prematurity program KIDROP that provides ROP screening by non-physicians. The analysis of 20,214 imaging sessions of 7106 from 36 rural centers in 77 months of activity are presented. The overall incidence of any stage and treatment requiring ROP was 22.39% and 3.57% respectively. We found a higher incidence of severe ROP in private (7.1%) vs government centers (1.7%). Fifty of the 254 babies (19.69%) who underwent treatment were outside the American screening guidelines cut-off. The report compares other “real-world” tele-ROP programs, summarizes the impact, and provides future strategies for outreach ROP screening in middle-income countries.

Introduction

Retinopathy of prematurity (ROP) is one of the leading causes of preventable infant blindness worldwide ∗[1], ∗[2]. Since the 1990s the focus of ROP as a public health problem has shifted from the industrialized world to middle-income nations ∗[1], ∗[2]. Countries with improving economies and standard of living have also shown rapid improvement in the survival of their infants. Infant mortality rates in India have fallen in the past two decades resulting in increased numbers of survivors, even in the rural areas. With decreasing mortality, emphasis on “intact survival” is now the new benchmark of neonatal quality of life in government-based child health programs [3], ∗[4]. Despite this, factors such as a high birth rate, declining infant mortality, improved survival of low-birth-weight babies, and lack of uniform neonatal care increase the vulnerability of these babies to unscreened ROP blindness in rural areas ∗[5], [6]. If detected on time, ROP blindness is largely preventable and has thus gained public importance in countries such as India, which have mandated ROP and universal screening [3]. Yet, the operational guidelines and road map remain incomplete and the infrastructure to execute these services remains grossly inadequate.

Countries such as India and China together account for more than half of the total number of premature infants born, with India alone accounting for 3.5 million preterm infants annually [4]. Whereas the incidence of ROP in India varies from 38% to 52% of “at-risk” babies in urban areas [7], [8], [9], [10], [11], [12], [13], rural ROP has recently been reported to be comparable [14], [15], [16]. The incidence of treatable ROP is ∼5–10% and this accounts for >60,000 infants annually who may progress to treatment requiring disease in India alone [17]. With <100 ROP specialists, most of whom practice in the cities, the vast majority of rural preterm infants remain unscreened, or are screened too late when they present with stage 5 disease to tertiary care centers in larger cities [18].

The Karnataka Internet Assisted Diagnosis of Retinopathy of Prematurity program (KIDROP) is a telemedicine project initiated in Bangalore, in the south Indian state of Karnataka, in 2008. It was the first endeavor to address the lack of rural ROP specialists by employing trained and accredited technicians who use portable, wide-field, digital, ocular, imaging cameras, namely the Retcam Shuttle (Clarity MSI, Pleasanton, CA, USA) to capture, analyze and report images of “at-risk” infants in rural outreach centers on a weekly rotation within designated rural zones ∗[5], [19]. Remote city ROP specialists provide diagnostic and treatment services to these demarcated zones. The ongoing program has undergone considerable expansion in the past six years through the support of the state and federal government, to include more centers throughout the state and train other states also (unpublished data). To the best of our knowledge, this is the first multicenter, rural outreach ROP incidence report collated through a telemedicine approach. All centers in this study received ROP screening exclusively through teams of non-physicians using tele-ROP exclusively managed through a public–private partnership (PPP) (Fig. 1).

We hope that our experience of 20,214 infant retinal imaging sessions from 36 rural neonatal intensive care units (NICUs) would help in further expansion of ROP services using tele-ROP in India and other middle-income countries with similar demographics. We also discuss the merits and demerits of a publicly supported private ROP screening program in India.