|Year : 2019 | Volume
| Issue : 6 | Page : 824-827
Barriers to timely presentation for appropriate care of retinopathy of prematurity in Odisha, Eastern India
Tapas Ranjan Padhi1, Anurag Badhani1, Snigdha Mahajan2, Laxmi Prabhavathi Savla1, Samir Sutar1, Subhadra Jalali3, Taraprasad Das3
1 Miriam Hyman Children Eye Care Center, L V Prasad Eye Institute, Mithu Tulsi Chanrai Campus, Bhubaneswar, Odisha, India
2 Department of Ophthalmology, Tagore Hospital and Heart Center, Jalandhar City, Punjab, India
3 Srimati Kanuri Shantamma Centre for Vitreoretinal Disease, L V Prasad Eye Institute, Kallam Anji Reddy Campus, Hyderabad, Telangana, India
|Date of Submission||09-Jun-2018|
|Date of Acceptance||10-Jan-2019|
|Date of Web Publication||24-May-2019|
Dr. Tapas Ranjan Padhi
Vitreoretinal Services, L V Prasad Eye Institute, Mithu Tulsi Chanrai Campus, Patia, Bhubaneswar - 751 024, Odisha
Source of Support: None, Conflict of Interest: None
Purpose: To analyze the causes for late presentation in a series of patients with advanced retinopathy of prematurity (ROP) in a tertiary eye care institute in Eastern India. Methods: We analyzed our medical records and ROP database retrospectively from 2007 to 2015 and prospectively thereafter till 2017 to identify the factors for late presentation in babies with advanced ROP (stages 4 and 5). Results: A total of 71 eligible subjects were analyzed. The mean chronological age was 15.1 months (2 months to 14 years). The three important barriers were: (1) the system and neonatal care policy failure (n = 45; 63.3%), (2) parental negligence and ignorance (n = 19; 26.7%), and (3) ophthalmologist's misdiagnosis or unavailability (n = 7; 10%). Majority of the babies (63.3%) were admitted in the neonatal care unit when they were due for ROP screening with an average duration of stay of 35.5 days. Conclusion: The main barriers to early screening for ROP were related to availability of trained human resources, ignorance of “parents and health care personnel,” and distance from the point of care. This calls for training of ophthalmologists, advocacy with neonatologists and parents, and create systems for better coordination and compliance of the care providers.
Keywords: Advanced retinopathy of prematurity, cicatricial retinopathy of prematurity, late presentation, retinopathy of prematurity, screening
|How to cite this article:|
Padhi TR, Badhani A, Mahajan S, Savla LP, Sutar S, Jalali S, Das T. Barriers to timely presentation for appropriate care of retinopathy of prematurity in Odisha, Eastern India. Indian J Ophthalmol 2019;67:824-7
|How to cite this URL:|
Padhi TR, Badhani A, Mahajan S, Savla LP, Sutar S, Jalali S, Das T. Barriers to timely presentation for appropriate care of retinopathy of prematurity in Odisha, Eastern India. Indian J Ophthalmol [serial online] 2019 [cited 2019 Jun 19];67:824-7. Available from: http://www.ijo.in/text.asp?2019/67/6/824/259075
With advancement in neonatal care, many underweight and underage babies survive today. This has resulted in increase in the incidence of retinopathy of prematurity (ROP) and is reported from many previously unaffected territories of developing and developed countries. With timely screening and appropriate treatment, many of these babies need not be blind.,
In this study of a cohort of cases with advanced ROP in a developing country (India) and in less affluent region (Eastern India), we have attempted to identify the barriers to early presentation and subsequent visual impairment and blindness.
| Methods|| |
The present study was conducted at a tertiary eye care institute in Eastern India from November 1, 2007 to October 31, 2017. The information from 2007 to 2015 was collected retrospectively and the data thereafter were gathered prospectively. The study was approved by the Institutional Review Board (2014-29-IM-6) and followed the tenets of the Declaration of Helsinki. All cases of previously untreated advanced ROP (defined as stage 4A, 4B, and 5) in at least one eye were included in the study. The diagnosis of ROP was based on history of prematurity and/or low birth weight and the characteristic ocular findings. The ROP was staged as per the latest international classification of ROP standard. The babies with other coexisting retinal or ocular pathologies or incomplete information were excluded.
Subjects eligible for the study were identified from the institute's ROP database, electronic medical records (EMR), and patient folders (before EMR system). The collected data included date of birth, gender, gestational age, birth weight, significant perinatal history, age at presentation, ocular findings as recorded in the patient chart, so also the fundus and B-scan images when available. Wherever required, the parents were interviewed face-to-face or over phone to obtain additional information. The parents' level of awareness about prematurity as the cause of eye problem in the baby, reason for seeking eye care, details of prior ophthalmic examinations, and pediatrician's referral sheet for ROP screening were also noted. Quality of referral advice was graded “good” if there was a mention of “who, where, and when to show” on the referral document. In absence of this information, quality of referral advice was labeled “poor.”
Against a benchmark of screening time at 20–30 days of life, we analyzed the links under two broad categories: (a) eligible for neonatal intensive care unit (NICU)-based screening; i.e. the babies were at the NICU on the due date for examination (either attained 4 weeks chronological age if their gestational age was ≥30 weeks or >20 days of chronological age if their gestational age was <30 weeks or birth weight was <1200 g) and (b) non-NICU-based screening; i.e. the babies were discharged before the due date (earlier than specified above). [Figure 1] shows an algorithm we used for a successful outcome in our ROP screening program. It consisted of five events in a non-NICU-based screening and two events in NICU-based screening.
|Figure 1: Chain of events and links in an effective ROP screening program|
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| Results|| |
[Table 1] summarizes the profile of babies with advanced ROP in this series. The majority had stage 5 ROP with bilateral involvement. Most of them (68.3%) were admitted in the NICU at their due date for screening (average duration 35.5 days). The reasons for seeking an eye examination included abnormal visual behavior and leukocoria (n = 39), referral from pediatrician/general ophthalmologist, strabismus, nystagmus, eye poking, and finally routine eye consult because someone else in the family had severe eye damage. The reason for late presentation [Figure 2] and [Figure 3] could be broadly grouped into three major categories: (1) absence of a system for NICU-based ROP screening and failure of the child care provider to refer (63.3%), (2) parental neglect (26.7%), and (3) failure by eye care provider (10%). The factors related to childcare provider included omission, tardy (referral after the recommended time for screening), and poor quality of referral (not mentioning the name, address, and contact number, clinic timings of ROP-trained ophthalmologist, etc.).
|Figure 2: Flow diagram showing the details of events leading to late presentation among the subjects with advanced ROP|
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|Figure 3: Pie diagram depicting the major causes of late presentation with advanced ROP|
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The parental causes for delay in seeking eye care included failure to realize the importance of early screening, inability to understand the written advice in the referral sheet, collateral health issues, lack of time and funds for travel to the eye care provider, inability to understand the seriousness of follow-up, and misbeliefs (such as frequent eye examination could cause infection and damage the eye). Majority of the parents regretted for bringing the babies late though, invariably they blamed the care providers for less rigorous advice. Despite timely initial screening, 11 of 19 parents did not show for review, and a long distance to travel to the ROP care provider was one among the attributed causes.
The ophthalmologist related factors included inaccurate/misdiagnosis (n = 6) and unavailability of the ROP trained specialist on the day of parental visit (n = 1). The common misdiagnoses were cataract, corneal scar, uveitis, persistent hyperplastic primary vitreous, retinoblastoma, and hereditary ocular pathology.
A total of 65 of 71 babies were from places farther than the capital city of Odisha, Bhubaneswar; the average distance was 178.6 (range − 35 to 442 and median 181) km. At least half of them (n = 36; 55.38%) had a birth weight <1200 g. In addition, 50 babies had received an ophthalmic examination (15 early and 35 late) before presentation to us. ROP was confirmed in two out of 15 early examined and 13 of 35 late examined babies. This suggested that the ophthalmologists were more familiar with late than early features of ROP.
| Discussion|| |
In a less-affluent region in Eastern India, Odisha, we observed gaps and lacunae at multiple levels in ROP care that resulted in advanced ROP features at presentation. The 71 babies with blindness or severe visual impairment reported here could actually represent a tip of iceberg. We presume there would be many similar undiagnosed cases in the community. These children have permanently lost the potential good vision that they were born with. This puts a life-long socioeconomic burden to the parents and the society; this could have been avoided by a “Ten-minute” timely screening.
A robust neonatal screening program exists in the capital city of Odisha, Bhubaneswar., But many babies with advanced ROP in this series hailed from distant places. Except for one, the ROP screening program was not integrated with respective high-risk newborn care units in these districts. And even in this one unit the screening was irregular and not protocol based. In each of the 30 districts of Odisha, there is at least one government special newborn care unit and 28 of them are located in the districts farther from Bhubaneswar. This results in low birth weight babies survival; but the neonatal ophthalmic care and awareness do not match this expansion of NICUs. This was true both for the ophthalmologists and treating neonatologists. In order to improve the situation, the NICUs must be equipped for ROP care or be covered under a ROP tele-screening network in the event of scarcity of skilled manpower. The infants discharged from the intensive care unit before ROP screening also represent a high-risk group that does not receive adequate follow-up eye care. This further emphasizes the importance of NICU-based ROP screening. Unfortunately, many ophthalmologists working with the government are not skilled to provide ROP care. In this series they could not recognize the early features of ROP in six babies. A mandatory policy of universal eye screening of all newborns at birth and subsequent timely screening for ROP would help. The Government of India has recently endorsed such a program and this must be expedited., It could begin with the medical schools where the ROP screening and treatment devices are already available. Finally, adoption of new technology of mobile units and tele-screening could help further the ROP care.
Advocacy and parental education is equally important. In this series despite timely initial screening, 11 parents ignored the follow-up advice. Once the NICU-based ROP screening is put in place, one could club the day of screening with the day of high-risk neonatal clinic. Good quality of care is essential.
The Queen Elizabeth Diamond Jubilee Trust (QEDJT) in partnership with the states and the Central Government of India is supporting certain districts in few Indian states to reduce the barriers to ROP detection and care. The program includes training a team of neonatal health care personnel (ophthalmologist. neonatologist, nurse), creating training infrastructure at district level, and advocacy amongst primary health care workers. In Odisha state the Trust supports the ROP program in the newborn care units in five districts and three of them are in the “peripheral” districts from where the babies reported late and are included in this cohort.
Finance and out-of-pocket expense is another constraint; four parents mentioned it. Hence the policymakers must consider financial support or provision of care of the baby at subsidized cost/no cost to the parents. Currently, the National Program of Prevention of Blindness and Visual Impairment (NPCB and VI) financially supports laser treatment in ROP babies, but curiously not for screening of babies-at-risk. This policy is unlikely to help much in early detection of ROP babies.
Adequate care for ROP calls for immediate short-term measures such as awareness amongst general public, advocacy with health policy planners, short-term training of the health care personnel, provision of the infrastructure, and governmental policy in care of neonates. The parents must be aware that the babies at risk of developing ROP include the ones born both premature and low birth weight, and that eye examination using an indirect ophthalmoscope or a pediatric retinal camera is safe. In this series eight parents ignored the advice of the physicians for early ophthalmic examination. Long-term measures are the mandatory inclusion of newborn eye health including ROP in curricula of all eye health personnel training (nurse, optometrist, and ophthalmologists) and in preventive medicine of graduate medical programs. The importance of preventive universal eye screening of newborns and ROP screening of premature babies is in no way less important than the preventive polio program.
| Conclusion|| |
Treatment-naïve advanced ROP is a concern in Odisha, Eastern India and points to lacunae at multiple levels. It must begin with a knowledge and belief that ROP could affect babies born underage and underweight, that this disease needs specific skills to diagnose and treat, and that blindness due to ROP is largely preventable when treated early. This calls for a coordination between policy, planning, and advocacy.
Sameer Nayak (data collection and filing of data in ROP database). Clare Gilbert, London School of Hygiene and Tropical Medicine, UK (For valuable inputs in improving the quality of the manuscript).
Financial support and sponsorship
LVPEI Bhubaneswar and Hyderabad receive funding from Queen Elizabeth Diamond Jubilee Trust and are on the Taskforce Government of India for ROP.
Part of this manuscript was presented and was awarded 3rd prize at World ROP Congress, Mexico 2017.
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3]