Results of the National Program for the Prevention of Blindness in Childhood by Retinopathy of Prematurity in Argentina (2004-2016). / Resultados del Programa Nacional de Prevención de la Ceguera en la Infancia por Retinopatía del Prematuro en Argentina (2004-2016).

INTRODUCTION: The ROP Argentina Group was created in 2003 and is responsible for the National Program for the Prevention of Blindness in Childhood by Retinopathy of Prematurity (ROP) in Argentina. OBJETIVES: To describe the program implementation and results achieved in relation to ROP care in terms of effectiveness, access, and quality (2004-2016). POPULATION AND METHODS: Descriptive, retrospective study with a dynamic cohort carried out in facilities that are part of the registry. Eligible population: All preterm newborn infants with risk factors for ROP. RESULTS: Participating health care services increased from 14 to 98 and covered the 23 provinces and the Autonomous City of Buenos Aires. A total of 956 infants were born with < 1500 g in 2004 and 2739, in 2016. Of these, 22.7 % had some degree of ROP and 7.8 % required treatment (severe ROP). Vision screening exceeded 90 %, and treatments at the place of origin increased (57 %-92 %). The incidence of unusual cases is still high (17.3 % of treated cases), and missed opportunities are still recorded. The use of anti-angiogenic drugs trebled since 2011, when they started to be used. CONCLUSIONS: Significant achievements were observed in terms of program representativeness, scope, and adherence, and also in relation to screening access and treatment at the place of origin; however, the incidence of ROP is still high. The persistence of unusual cases and missed opportunities evidences deficiencies in the quality of health care and outpatient followup and underlines the need to strengthen the program actions in relation to services.

Introducción. El Grupo ROP Argentina,a cargo del "Programa Nacional para la Prevención de la Ceguera en la Infancia por Retinopatía del Prematuro" (ROP), se creó en 2003. Objetivos. Describir la implementación y resultados alcanzados por el programa en la efectividad, acceso y calidad en la atención de la ROP (2004-2016). Población y métodos. Estudio descriptivo, retrospectivo, de una cohorte dinámica, en instituciones adheridas al registro. Población elegible: la totalidad de recién nacidos prematuros con factores de riesgo para desarrollar ROP. Resultados. Los servicios incorporados aumentaron de 14 a 98; cubrieron 24 provincias. Los niños < 1500 g registrados en 2004fueron 956, y 2739 en 2016. El 22,7 % de estos presentó algún grado de ROP y el 7,8 % requirió tratamiento (ROP grave). La pesquisa superó el 90 % y aumentaron los tratamientos en el lugar de origen (57 %-92 %). La incidencia de casos inusuales sigue siendo elevada (17,3 % de los tratados) y aún se registran oportunidades perdidas. El uso de drogas antiangiogénicas se triplicó desde su inicio en 2011. Conclusiones. Se observan logros significativos en términos de representatividad, alcance y adherencia al programa, también en el acceso a la pesquisa y tratamiento en el lugar de origen; sin embargo, la incidencia de ROP es aún elevada. La subraya la necesidad de fortalecer aún más las acciones del programa en cuanto a servicios.

Reducing Blindness from Retinopathy of Prematurity (ROP) in Argentina Through Collaboration, Advocacy and Policy Implementation.

Retinopathy of prematurity (ROP) is a largely avoidable cause of blindness in children worldwide, requiring high-quality neonatal care, early detection and treatment. In middle-income countries throughout Latin America, Eastern Europe and South Asia, there has been a rise in ROP blindness due to a combination of increased survival of preterm infants, resource-scarce medical environments and lack of policies, training and human resources. However, Argentina is an example of country where rates of ROP blindness have declined and ROP programmes have been successfully and effectively embedded within the health and legal system. The purpose of this study is to describe the activities and stakeholders, including Ministry of Health (MoH) and UNICEF, involved in the process, from recognition of an epidemic of ROP blindness to the development of national guidelines, policies and legislation for control. Using a retrospective mixed methods case study design, data on rates of severe ROP was collected from 13 neonatal intensive care units from 1999 to 2012, and on the proportion of children blind from ROP in nine blind schools in seven provinces. Legislative document review, focus group discussions and key informant interviews were conducted with neonatologists, ophthalmologists, neonatal nurses, parents, MoH officials, clinical societies, legislators and UNICEF officials in seven provinces. Results are presented combining the stages heuristic policy framework and Shiffman including: agenda setting, policy formulation, implementation and evaluation. By 2012, ROP had declined as a cause of blindness in children in schools for the blind as had rates of severe ROP needing treatment in the NICUs visited. Multiple factors played a role in reducing blindness from ROP in Argentina and successfully coordinating its control including national advocacy, leadership, legislation and international collaboration. Lessons learned in Argentina can potentially be scaled to other LMICs in Latin America and beyond with further context-specific research.

Implementation in Buenos Aires City of a program to prevent neurological damage caused by hypoxic-ischemic encephalopathy: Therapeutic hypothermia.

Therapeutic hypothermia is the standard of care for hypoxic-ischemic encephalopathy (HIE). This treatment was implemented at a regional level by the perinatal network of the City of Buenos Aires. The following are the objectives of this article: 1. To describe the implementation of the network's hypothermia treatment program; 2. To report treatment-associated complications, adverse events and mortality. The program was implemented in stages: 1) 2009-2010. Training and instruction on how to use the equipment. 2) 20102014. Treatment and follow-up of patients with moderate or severe HIE. Up to October 2014, 27 newborn infants received hypothermia treatment with moderate (n= 15) and severe (n= 12) HIE. None of the patients died during treatment. Three newborn infants were lost to follow-up. Among the 16 survivors older than one year old, three have severe neurological disability. Program implementation was plausible. It is imperative to train health care providers on how to identify patients with HIE.

Resultados del Programa Nacional de Prevención de la Ceguera en la Infancia por Retinopatía del Prematuro en Argentina (2004-2016) / Results of the National Program for the Prevention of Blindness in Childhood by Retinopathy of Prematurity in Argentina (2004-2016)

Introducción. El Grupo ROP Argentina,a cargo del "Programa Nacional para la Prevención de la Ceguera en la Infancia por Retinopatía del Prematuro" (ROP), se creó en 2003. Objetivos. Describir la implementación y resultados alcanzados por el programa en la efectividad, acceso y calidad en la atención de la ROP (2004-2016). Población y métodos. Estudio descriptivo, retrospectivo, de una cohorte dinámica, en instituciones adheridas al registro. Población elegible: la totalidad de recién nacidos prematuros con factores de riesgo para desarrollar ROP. Resultados. Los servicios incorporados aumentaron de 14 a 98; cubrieron 24 provincias. Los niños < 1500 g registrados en 2004fueron 956, y 2739 en 2016. El 22,7 % de estos presentó algún grado de ROP y el 7,8 % requirió tratamiento (ROP grave). La pesquisa superó el 90 % y aumentaron los tratamientos en el lugar de origen (57 %-92 %). La incidencia de casos inusuales sigue siendo elevada (17,3 % de los tratados) y aún se registran oportunidades perdidas. El uso de drogas antiangiogénicas se triplicó desde su inicio en 2011. Conclusiones. Se observan logros significativos en términos de representatividad, alcance y adherencia al programa, también en el acceso a la pesquisa y tratamiento en el lugar de origen; sin embargo, la incidencia de ROP es aún elevada. La subraya la necesidad de fortalecer aún más las acciones del programa en cuanto a servicios.

Introduction. The ROP Argentina Group was created in 2003 and is responsible for the National Program for the Prevention of Blindness in Childhood by Retinopathy of Prematurity (ROP) in Argentina. Objectives. To describe the program implementation and results achieved in relation to ROP care in terms of effectiveness, access, and quality (2004-2016). Population and methods. Descriptive, retrospective study with a dynamic cohort carried out in facilities that are part of the registry. Eligible population: All preterm newborn infants with risk factors for ROP. Results. Participating health care services increased from 14 to 98 and covered the 23 provinces and the Autonomous City of Buenos Aires. A total of 956 infants were born with < 1500 g in 2004 and 2739, in 2016. Of these, 22.7 % had some degree of ROP and 7.8 % required treatment (severe ROP). Vision screening exceeded 90 %, and treatments at the place of origin increased (57 %-92 %). The incidence of unusual cases is still high (17.3 % of treated cases), and missed opportunities are still recorded. The use of anti-angiogenic drugs trebled since 2011, when they started to be used. Conclusions. Significant achievements were observed in terms of program representativeness, scope, and adherence, and also in relation to screening access and treatment at the place of origin; however, the incidence of ROP is still high. The persistence of unusual cases and missed opportunities evidences deficiencies in the quality of health care and outpatient followup and underlines the need to strengthen the program actions in relation to services.

[Epidemiology of retinopathy of prematurity in public services from Argentina during 2008]. / Epidemiología de la retinopatía del prematuro en servicios públicos de la Argentina durante 2008.

INTRODUCTION: Increasing survival of preterm newborns and current care deficits result in high rates of retinopathy of prematurity (ROP), affecting patients with higher birth weight (BW) and gestational age (GA) than those at developed countries; unusual cases (UC) and missed opportunities (MO) are reported. OBJECTIVE: To describe epidemiology of ROP during 2008 compared with the previous year. POPULATION, MATERIAL AND METHOD: Observational, descriptive and retrospective study. POPULATION: Preterm babies with BW < 1,500 g and/or < or = 32 w GA and > or = 1,500 g and/or 33-36 w who received oxygen therapy. SOURCE: 31 public services from 20/24 Provinces. VARIABLES: BW, GA, ophthalmologic screening, age at 1st control, ROP Grade, treatment requirement, place of treatment and time of complete ROP screening. RESULTS: Responses were obtained from 24/31 services from 16 Provinces (84,200 newborns) identifying 3,371 newborns at risk, 956 < 1,500 g BW. Screening was done in 90%; it was late in 6%. Neonatal discharge before complete ROP screening occurred in 93%. ROP rate was 11.93%; 26.25% in < 1,500 g BW. Treatment was required at 2.60%; of them, 7% were < 1,500 g BW; 20.3% were UC, one infant was a MO. Treatment need increased 20% at 2008 vs. 2007, without significant difference. Changes were not observed at median BW and GA and UC. Treatment in situ was 75% in 2008, similar to 2007. CONCLUSIONS: Incidence of ROP in public hospitals of Argentina is worrisome. Rates in 2008 have not improved compared with 2007, expressing that criteria for prevention are not yet consolidated. Screening and access to treatment must improve.

[Laser treatment for retinopathy of prematurity in 27 public services of Argentina]. / Tratamiento con láser por retinopatía del prematuro en 27 servicios públicos argentinos.

INTRODUCTION: Retinopathy of prematurity may lead to partial loss of vision and blindness; laser photocoagulation is the elective treatment, but universal access to it is not yet guaranteed in Argentina. OBJECTIVES: To estimate prevalence of children requiring laser for retinopathy, their clinical and demographic characteristics, place of origin and place of treatment. POPULATION, MATERIAL AND METHOD: Observational, descriptive and retrospective study. POPULATION: premature newborns who required treatment at public services during 2008. VARIABLES: Birth weight and gestational age, prognosis, unusual cases and missed opportunities. SOURCE: 27 public services from 18/24 provinces. RESULTS: 235 patients who required treatment were recorded (Garrahan Hospital: 86; Gutiérrez Hospital: 45, and 104 from 25 other hospitals) from 77 public services and 13 private services from 22/24 provinces, where 210,720 babies born at the same period. Cases from Buenos Aires Province were referred mainly to Garrahan Hospital, all cases from Buenos Aires City and 2/3 from the rest of the country were treated in situ. Prognosis was defined as reserved at 15% and 5 missed opportunities occurred all in referred babies. Unusual cases were 27% of the total reported. CONCLUSION: In this population retinopathy prevalence was 1/900 birth in 2008. The proportion of unusual cases, reserved prognosis and missed opportunities was high. A national record and improved access to treatment in situ are urgently needed.

Tratamiento con láser por retinopatía del prematuro en 27 servicios públicos argentinos / Laser treatment for retinopathy of prematurity in 27 public services of Argentina

La retinopatía del prematuropuede conducir a pérdida parcial de la visión y ceguera; la fotocoagulación con láser es el tratamiento electivo, aunque aún no está garantizado el acceso universal a él en la Argentina.Objetivo. Estimar la prevalencia de niños que requirieron tratamiento con láser por retinopatía,sus características clínico-demográficas, lugar de procedencia y tratamiento.Población, material y método. Estudio observacional, descriptivo, retrospectivo. Población: recién nacidos prematuros que requirieron tratamiento en servicios públicos durante 2008.Variables: peso y edad gestacional al nacer, pronóstico, casos inusuales y oportunidades perdidas.Fuente: 27 Servicios públicos de 18/24provincias.

Epidemiología de la retinopatía del prematuro en servicios públicos de la Argentina durante 2008 / Epidemiology of retinopathy of prematurity in publics services from Argentina during 2008

El aumento de la supervicencia en prematuros y las deficiencias en su atención incrementan los casos de retinopatía del prematuro (ROP) la ROP afecta a pacientes con mayor peso (PN) y edad gestacional (EG) al nacer que en países desarrollados; se observan casos inusuales y oportunidades perdidas. Objetivo. Describir la epidemiología de la ROP 2008 y comparar los resultados con los del año anterior. Población y Método. Estudio obserbacional, descriptivo, retrospectivo. Población: pretérminos con PN menor 1500g y/o 0 menor o igual 32 sem EG y mayor igual 1500g y 33-36 sem con oxigenoterapia. Fuente: 31 servicios públicos de la Argentina. Variables: PN, EG, pesquisa oftalmológica, edad al 1er control, grado de ROP, necesidad y lugar de tratamiento y alta oftalmológica. Resultados. Respondieron 24 servicios (84200 nacimientos) donde se registraron 3371 niños con riesgo de ROP; 956 con PN menor 1500g. Pesquisados 90 por ciento, tardíamente 6 por ciento. Egresaron sin alta oftalmológica 93 por ciento. La incidencia de ROP fue de 11,93 por ciento; 26,25 por ciento en menor 1500g. Requirieron tratamiento 2,60 por ciento; 7 por ciento fueron menor 1500g; los casos inusuales fueron 20,3 por ciento y hubo una oportunidad perdida. Los casos tratados aumentaron 20 por ciento en 2008 respecto del 2007, sin alcanzar significación estadística. Las medias de PN, EG y los CI no variaron. El 75 por ciento de los tratamientos fueron in situ, sin cambios respecto a 2007. Conclusiones: Persisten indicadores preocupante de ROP en los servicios públicos de la Argentina. La falta de cambios en el 2008 respecto del 2007 hace suponer que no se han consolidado los conceptos sustantivos de la prevención. La pesquisa y el acceso al tratamiento son perfectibles.