Improving the control of blindness in children in low- and middle-income countries through programmes, policy and legislation
Submitting InstitutionLondon School of Hygiene & Tropical Medicine
Unit of AssessmentPublic Health, Health Services and Primary Care
Summary Impact TypeHealth
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
Professor Gilbert's research identified retinopathy of prematurity (ROP)
to be a major cause of blindness in children in middle-income countries
and cities in Asia, and delineated those infants most at risk. Since
Gilbert joined LSHTM in 2002, her research and advocacy have led to ROP
being prioritised for control by the Pan American Health Organization,
with regional guidelines developed for Latin America, and national
guidelines in many middle-income counties. Programmes for control are
expanding and improving. Six Latin American countries have made eye
examination mandatory. Although difficult to quantify, these initiatives
are preserving the sight of many thousands of infants.
In 1993, while at the Institute of Ophthalmology, Clare Gilbert worked
with WHO to develop the first classification system for blindness in
children, which has become the standard methodology. Initial research
entailed examining children in schools for the blind in Latin America,
Eastern Europe, Africa and Asia. Research published in 1997 demonstrated
for the first time that ROP was as an important cause of avoidable
blindness in children in middle-income countries.
In June 2002, Gilbert moved to LSHTM as Senior Lecturer in International
Eye Health. Population- based studies undertaken in a number of countries
(e.g. Vietnam and Bangladesh) showed the situation to be dynamic, with
some causes of blindness declining in importance while ROP was increasing
in the middle-income countries of Latin America and Eastern Europe, and in
the emerging economics of China, India and Vietnam.3.1
A multi-country study led by Gilbert clearly demonstrated that the
population of infants at risk of severe ROP varies by level of
development,3.2 and more detailed studies in South Africa3.3
and Brazil3.4 identified weaknesses in neonatal service
delivery. The large, prospective study in seven neonatal units in Rio de
Janeiro, Brazil3.4 had several purposes. An initial situation
analysis of the health system highlighted limitations in human resources,
technology and equipment, leadership and governance, and information
management. Most of the nursing was provided by nurse assistants who had
received no formal training. A further purpose was to determine which
babies were at risk of ROP, to inform screening criteria. Findings
supported the earlier work by Gilbert that bigger, more mature infants
develop severe ROP, which has important implications for screening
criteria. Researchers also explored the additional workload if wider
screening criteria were used. A case control study was nested within this
study, showing for the first time that neonatal units were an independent
risk factor. This supported the notion that ROP is a reflection of the
overall level of neonatal care and that improvement in many aspects of the
health system are needed to prevent ROP.
A further study in Rio,3.5 with a before and after design,
assessed whether an educational package for nurses, strengthening
information systems and building the capacity of nurse tutors would reduce
mortality and ROP. The results showed that `healthy survival' (i.e.
without ROP) was declining in the pre-intervention year, and that the
downward trend reversed in the post- intervention year. Unfortunately, the
change in trend was not statistically significant. However, a study in
Argentina in 20123.6 showed that better control of oxygen
reduced the risk of severe ROP.
A situation analysis of 32 neonatal units in five states in Mexico
highlighted limitations in service delivery, lack of awareness among
nurses of risk factors for ROP and poor nursing practices. Only 25% of
infants at risk of ROP were in units with an ROP programme of adequate
References to the research
3.1 Gilbert, C, Fielder, A, Gordillo, L, Quinn, G, Semiglia, R, Visintin,
P and Zin, A, on behalf of the International NO-ROP Group (2005)
Characteristics of infants with severe retinopathy of prematurity in
countries with low, moderate, and high levels of development: implications
for screening programs, Pediatrics, 115(5): e518-e525, doi:
10.1542/peds.2004-1180. Citation count: 137
3.2 Gilbert, C (2008) Retinopathy of prematurity: a global perspective of
the epidemics, population of babies at risk and implications for control,
Early Human Development, 84(2): 77-82,
doi:10.1016/j.earlhumdev.2007.11.009. Citation count: 106.
3.3 Varughese, S, Gilbert, C, Pieper, C and Cook, C (2008) Retinopathy of
prematurity in South Africa: an assessment of needs, resources and
requirements for screening programmes, British Journal of
Ophthalmology, 92(7): 879-882, doi:10.1136/bjo.2008.137588. Citation
3.4 Zin, AA, Moreira, MEL, Bunce, C, Darlow, B and Gilbert, C (2010)
Retinopathy of prematurity in 7 neonatal units in Rio de Janeiro:
screening criteria and workload implications, Pediatrics, 126(2):
e410-e417, doi:10.1542/peds.2010-0090. Citation count: 14
3.5 Darlow, BA, Zin, AA, Beecroft, G, Moreira, MEL and Gilbert, C (2012)
Capacity building of nurses providing neonatal care in Rio de Janeiro,
Brazil: methods for the POINTS of care project to enhance nursing
education and reduce adverse neonatal outcomes, BMC Nursing,
11(3), doi:10.1186/1472-6955-11-3. Citation count: 1
3.6 Urrets-Zavalia, JA, Crim, N, Knoll, EG, Esposito, FA, Collino, E,
Urrets-Zavalia ME, Saenz-de- Tejada, G, Torrealday, JI, Serra, HM and
Gilbert C (2012) Impact of changing oxygenation policies on retinopathy of
prematurity in a neonatal unit in Argentina, British Journal of
Ophthalmology, 96(12): 1456-1461,
doi:10.1136/bjophthalmol-2011-301394. Citation count: 0.
The Thrasher Medical Research Trust (USA); Christofel Blind Mission (CBM)
(Germany). The other large donor wishes to remain anonymous.
Details of the impact
Since Gilbert joined LSHTM in 2002 she has presented research findings
extensively which has led to greater awareness of the public health
problem of ROP. Dissemination has been through workshops attended by
ophthalmologists, neonatologists and neonatal nurses: 19 workshops in
Latin America (Brazil, Mexico, Colombia, Cuba, Venezuela, Panama and
Peru), and 3 in Eastern Europe. Other facilitators are now taking over
this role to increase the reach. Presentations have been made since 2008
to Ministries of Health (Peru, Brazil, Jamaica), at two World ROP
Congresses (India 2009; China 2012), to NGOs who support prevention of
blindness (Sightsavers; ORBIS International; Standard Chartered Bank's
Seeing is Believing programme) and at numerous international, regional and
national meetings, conferences and seminars. Research findings have been
summarised in five textbooks (13 chapters, including updates in new
editions), one of which, The Epidemiology of Eye Disease, is the
standard textbook for several postgraduate training courses.5.1
The educational package developed for the Rio study was made available in
2013 as an online course (at http://neonatal.estacaodigitalsaude.org.br/aia/)
and over 4,500 professionals have registered.
Greater awareness that ROP is a major avoidable cause of blindness in
children has had the following impact:
- ROP continues to be recognised as a major cause of avoidable blindness
by VISION 2020: The Right to Sight, which is the 20-year global
initiative of WHO and the International Agency for the Prevention of
Blindness (IAPB). The latter is an umbrella organisation of all the
organisations involved in prevention of blindness including NGOs,
professional bodies, service providers, the corporate sector and
university departments. IAPB currently has 155 members.
- In 2009 the control of blindness due to ROP was prioritised within the
Pan American Health Organization's prevention of blindness policy for
Latin America5.2 and the Caribbean in 2010.5.3,5.4,5.5
- ROP is a priority in the Chinese National Plan for the Prevention and
Treatment of Blindness (2012-2015).
- In 2008, neonatologists from 8 countries, ophthalmologists from 12
countries and neonatal nurses from 6 countries in Latin America met in
Panama to develop regional guidelines for ROP programmes, which have
since been published, referencing the applicant's research.5.6
These guidelines are being updated and modified by many other countries
in the region (e.g. Venezuela, Nicaragua). Guidelines are being drawn up
- In Peru (2010),5.7 Mexico (2013),5.8 Argentina,
Chile, Colombia and El Salvador, legislation has been passed making eye
examination of preterm infants mandatory.
- Ministries of Health in Argentina, Chile, Colombia, El Salvador,
Mexico and Peru have issued resolutions recommending eye examination of
all preterm births, and in Rio de Janeiro programmes are fully
integrated within state and municipal health systems.
- The Pan American Ophthalmology Society has established an ROP Society.
- There has been increased support for the control of ROP in Latin
America and other countries (e.g. Pakistan, India, China, Vietnam) from
NGOs: ORBIS international (USA),5.9 CBM, (Germany), Seeing is
Believing (UK), the Queen Elizabeth Diamond Jubilee Trust (UK), Fred
Hollows Foundation (Australia). UNICEF has supported initiatives for
prevention in Argentina and is supporting initiatives in India.
All these factors have led to rapid expansion of ROP programmes in many
countries in Latin and Central America, and in Asia. For example, in Rio
de Janeiro, Brazil, only 40% of preterm infants were admitted to neonatal
units with a screening programme in 2002, but this has increased so that
most government units now have programmes. Similar expansion has occurred
in other major cities in Brazil. Legislation in Peru has had a dramatic
impact, building consensus and leading to expansion of programmes in Lima
and many other cities across the country.
Treatment at a critical stage in the natural history of ROP is highly
effective at preventing blindness. In the screening programme in Rio de
Janeiro 1,444 infants most at risk of ROP were examined and 118 were
treated. The disease regressed completely in all but 5 infants. Without
treatment at least a quarter would have become blind. Data from Argentina
suggests that there has been a dramatic reduction in blindness from ROP,
with far fewer children being admitted to schools for the blind than 10
years ago, when almost 40% of blindness was due to ROP.5.10
Extrapolating these findings across Latin America and other low- and
middle-income countries means that many thousands of infants are having
their sight preserved.
Sources to corroborate the impact
5.1 Editor, The Epidemiology of Eye Disease. (Johnson, GJ,
Minassian, DC, Wheale, RA and West, SK (2012) The Epidemiology of Eye
Disease, 3rd edn. London: Imperial College Press).
5.2 Pan American Health Organization (2009) 144th Session
of the Executive Committee: Plan of Action on the Prevention of
Avoidable Blindness and Visual Impairment, CE144/20 (English).
Washington, DC: WHO, http://www2.paho.org/hq/dmdocuments/2009/CE144-20-e.pdf
(accessed 11 September 2013). Gilbert's work is referred to in paragraph 8
and reference 9.
5.3 Pan American Health Organization (2010) Strategic Framework for
VISION 2020: The Right to Sight, Caribbean Region, OPS/PBL/2010.1
PAHO/ECC. Barbados: WHO, http://www.eyecarecaribbean.com/ecc/research/VISION%202020%20Strategic%20Framework-
Caribbean%202010.pdf (accessed 11 September 2013). ROP covered in
para 2.1.1, and Gilbert's work referenced in Bibliography ref 6.
5.4 Regional Adviser on Eye Care, Pan American Health Organization, WHO.
5.5 Regional Coordinator, VISION 2020 Latin America.
5.6 Grupo de Trabajo Colaborativo Multicéntrico para la Prevención de la
Ceguera en la Infancia por Retinopatía del Prematuro (Lomuto C, Benítez A,
Bouzas L, Galina, L, Sepúlveda, T, Goldsmit, G, Visintín, P, Hauviller, V,
Brussa, M, Luján, S, Alda, E, Bauer, G, Dinerstein, A, Santos, N,
Marinaro, S, Falbo, J, Quiroga, A, Erpen, N, Sola, A, Gilbert C and Vohr,
B) (2008) Recomendación para la pesquisa de Retinopatía del Prematuro en
poblaciones de riesgo [Recommendations for retinopathy of prematurity
screening in at-risk populations] (Spanish), Archivos Argentinos de
Pediatría, 106(1): 71-76,
00752008000100016&lng=en&nrm=iso&tlng=en (accessed 23
5.7 Ministro de Salud (2010) Aprueban Norma Técnica de Salud de
Atención del Recien Nacido pre término con riesgo de Retinopatia del
Prematuro (Spanish), Resulition Ministerial no 707- 2010/MINDSA.
Lima: Ministro de Salud, Peru,13 September.
5.8 Secretaria de Salud (2013) Decreto por el que se reforma el articulo
61 de la Ley General de Salud (Spanish), Diaro Oficial de la
Federación: Organo del Gobierno Constitucional de los Estados Unidos
Mexicanos, 712(19), 25 January,
(accessed 23 September 2013).
5.9 Director LAC Regional Program, Monitoring & Evaluation, &
Senior Technical Adviser, ORBIS International.
5.10 Director, Valentin Hauy, Centre for the Rehabilitation of the
Visually Impaired, Corrientes, Argentina.