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ORIGINAL ARTICLE
Year : 2019  |  Volume : 26  |  Issue : 2  |  Page : 83-88  

Role of a community-based program for identification and referral of pediatric cataract patients in Kinshasa, Democratic Republic Of The Congo


1 Eye Department, Saint Joseph Hospital/Centre de Formation Ophtalmologique Pour l'Afrique Centrale, Kinshasa, Democratic Republic of the Congo
2 Department of Ophthalmology, Rostock University Medical Center, Rostock, Germany
3 Community Based Rehabilitation Programme, Kinshasa-Limete, Democratic Republic of the Congo
4 National Programme for Eye Health and Vision, Kinshasa, Democratic Republic of the Congo

Date of Web Publication26-Aug-2019

Correspondence Address:
Dr. Janvier Ngoy Kilangalanga
Eye Department, Saint Joseph Hospital, P.O. Box 322, Limete, Kinshasa
Democratic Republic of the Congo
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/meajo.MEAJO_273_18

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   Abstract 


PURPOSE: The purpose of this study is to describe the methodology and to assess the effectiveness of a community-based rehabilitation (CBR) program to identify and refer children with blinding cataract for the management and surgery to reduce the burden of childhood blindness due to cataract in Kinshasa.
METHODS: Church-based volunteers were trained to identify children with presumed eye disorders in their localities and households and to refer them for cataract identification by an ophthalmic nurse during parishes' visits. Volunteers were parishioners living in the quartiers where identification took place and worked as community workers with the CBR program. Nurses used a lamp-torch to rule out cataract. Selected children were referred to the tertiary eye health facility at St Joseph Hospital for diagnosis and management.
RESULTS: Identification took place in 31 out of 165 parishes in the Archdioceses of Kinshasa from 2000 to 2016 and 11,106 children aged <16 years were screened. Among them, 1277 children (11.5%) were presumed to have cataract. Ninety-two children among them died before surgery; 107 children were lost to further follow-up and did not report to the CBR center for referral. Reasons given were change of home address, moving in their lieu of origin, death, and refusal of treatment by the parents. Finally, only 1078 children were referred to the pediatric ophthalmologist and 705 children (65.4%) were definitively diagnosed to have treatable cataract, while in 373 children (34.6%), cataract surgery was not indicated for several reasons. There was a positive history of familial cataract in 36 children (2.8%).
CONCLUSION: Using church-based volunteers and ophthalmic nurses during community screening proved efficient in the identification and referral of pediatric cataract. Keeping regular identification activities in the community and maintaining high-quality and accessible pediatric cataract surgery services can help to clear up the backlog of cataract blind children.

Keywords: Community-based program, faith-based volunteers, identification, pediatric cataract


How to cite this article:
Kilangalanga JN, Stahnke T, Moanda A, Makwanga E, Hopkins A, Guthoff RF. Role of a community-based program for identification and referral of pediatric cataract patients in Kinshasa, Democratic Republic Of The Congo. Middle East Afr J Ophthalmol 2019;26:83-8

How to cite this URL:
Kilangalanga JN, Stahnke T, Moanda A, Makwanga E, Hopkins A, Guthoff RF. Role of a community-based program for identification and referral of pediatric cataract patients in Kinshasa, Democratic Republic Of The Congo. Middle East Afr J Ophthalmol [serial online] 2019 [cited 2019 Sep 17];26:83-8. Available from: http://www.meajo.org/text.asp?2019/26/2/83/265371




   Introduction Top


Pediatric cataract is the leading cause of avoidable blindness in children in Africa, and it was found to be the main treatable cause of childhood blindness in Kinshasa.[1],[2] The proportion of blindness in children due to cataract varies considerably among regions from 10% to 30% with a global average estimate at 14%, giving 190,000 children blinded from cataract.[3] In most African countries, there is a large backlog of congenital and developmental cataract in the community. The availability of a pediatric cataract screening program with a referral system to a surgical facility and a follow-up process to address further complications provides an opportunity to address and possibly clear up the existing backlog. Early screening of blind children in the community and referral for early management in a well-equipped eye center should improve the quality of children's lives and increase their life expectancy.[4]

In 1998, a community-based rehabilitation (CBR) program was launched in Kinshasa, with its mission to address people with disabilities (motor, blindness, deafness, palatine and facial cleft, intellectual handicap) and chronic diseases affecting inaccessible people in the community. The CBR program used to focus mainly on visiting, identifying, and referring needy people to appropriate health facilities and their integration into society. The CBR program acted as a part of social work of the Catholic Church in Kinshasa and worked with parishioners as volunteers on a charitable basis. Before the existence of the CBR program in 1999, pediatric cataract surgery was done at Saint Joseph Hospital, but only a few children presented for surgery. In 2000, a childhood blindness activity was integrated into the CBR program working 1 day per week to find all children with blindness and severe visual impairment (SVI) in the community, especially those presumed to have cataract. Pediatric cataract identification was the main focus during screening sessions in visited parishes. The Eye Department at Saint Joseph Hospital was consequently equipped and the personnel trained in how to offer comprehensive care of children diagnosed with pediatric cataract.

This study aims to describe the work methodology and to determine the effectiveness of the model of a church-based community rehabilitation program to address childhood blindness and SVI due to cataract in Kinshasa.


   Methods Top


This was a cross-sectional assessment of efficiency of a community-based program in identifying children with cataract in Kinshasa from January 2000 to December 2016. The activities were undertaken in 31 parishes where volunteers found children living in quartiers of 16 health zones (population 4,083,052) in Kinshasa, capital of the Democratic Republic of the Congo (DRC) with an overall estimated population of 8 million inhabitants. Volunteers visited households and identified children aged <18 years in suspected of having eye disorders and accompanied them to CBR screening activity in parishes for possible cataracts [Figure 1].
Figure 1: Organigram of the community-based rehabilitation program

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Selection and training of volunteers

Volunteers are parishioners and were selected by the parish authorities; they were living in the community and belonged to the parish charitable network. They were well known by people in the community, and the population trusted them. Each volunteer was responsible for 10–15 households in an area of four avenues organized by an ecclesiastical structure that met every Thursday for prayers and for other community activities. Only four volunteers were involved in finding children with eye disorders per parish. Main messages, including announcing household visits by volunteers, were given to members of the local community during weekly evening meetings and spread to the remaining people in their streets. Training was given by ophthalmologists working for Saint Joseph Hospital. The curriculum comprised elementary anatomy of the eye, an overview of the World Health Organization (WHO) Vision 2020 initiative, the causes of childhood blindness, identification of children with eye disorders, distinguishing the abnormal eye from a normal eye; recording of selected children, interaction with parents by giving them the right information about management process of eye disorders from identification, referral, and treatment.

Identification of children in the community

Volunteers visited parents in households and asked them if their children experienced any eye health problems such as redness, visual troubles, white dot in the pupil, change of the color of the white or black part of the eye, deviation of the ocular globe, and any deformation of the globe. A list of children was then established, and parents were asked to present their children at the parish on the scheduled day for CBR screening activity. The day before the examination, volunteers' supervisor used megaphones to remind parents and sensitized families to present their children at the parish center. Radio messages, posters, and messages during the mass were also used to remind parents and the community about the CBR screening activity in their parish.

Selected children were examined by ophthalmic nurses using a lamp-torch to rule out cataract. Children identified with presumed cataract were recorded. Parents were then invited to present at the CBR office the following day to be referred to the pediatric subspecialist at the Eye Department at Saint Joseph Hospital. There, the children were examined and the diagnosis of cataract and other eye conditions was made.

The community-based pediatric cataract management is summarized in a flowchart [Figure 2].
Figure 2: Organigram of the community-based pediatric cataract management

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Statistics

Data were collected from a register kept by the CBR program, and we used Excel software for calculations and graphics. Results were expressed as means (standard deviation) and frequencies.

Ethical approvaland consent to participate

The program described in this study was coordinated from the Archdioceses of Kinshasa and Saint Joseph Hospital (Kinshasa, DRC). Every examination and intervention followed the guidelines of the Declaration of Helsinki. Ethical approval was obtained from the ethics committee of St Joseph Hospital and from the Congolese National Programme for Eyecare and Vision. Written or oral informed consent was obtained from children's parents or tutors to participate to the CBR identification and referral program. Parents or children were free to refuse participating to the CBR activities.


   Results Top


Descriptive statistics and magnitude

From 2000 to 2016, the CBR childhood cataract program screened 11,106 children aged from 0 to 15 years presumed to have eye health problems in 31 parishes situated in 16 health zones (population estimated at 4,083,052 inhabitants). The mean number of children screened was 653 ± 294 per year. From 11,106 children examined, 1277 (11.5%) were presumed to have cataract. The annual average of children identified with cataract was 75.1 ± 28.8. Ophthalmic nurses noted 118 children (9.2%) with unilateral cataract and 1159 with bilateral cataract (90.8%) who were identified in the community. Considering the population in the catchment area and the number of children screened, the theoretical backlog was calculated as 313 children with cataract per million of inhabitants. The recorded incidence of pediatric cataract cases was 18.4 cases per million inhabitants per year. The great numbers of children screened in the community occurred in 2002 (n = 1062), 2007 (n = 1409), and 2008 (n = 935) as it is shown in [Figure 3].
Figure 3: Frequency of children screened and identified to have cataract in the

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Referral for surgery

Among 1277 children who were identified with cataract, 92 children (7.2%) died just after identification; 107 (8.4%) children were lost and never presented to the CBR program to be referred to the hospital. Overall, 1078 children (84.4%) were referred to the Eye Department and were examined by the ophthalmologists for the definitive diagnosis. From the 1078 referred children, cataract was confirmed and surgery was indicated in 705 children (65.4%). In 373 children (34.6%), cataract surgery was not indicated due to other associated conditions such as late childhood glaucoma, severe microcornea, sclerocornea, keratoconus, and severe cardiopathies making surgery too risky. A familial cataract history was found in 36 children (2.8%) who were aged between 2 and 5 years and came from 14 families. Malnutrition was encountered in 18 children, and five children were intellectually challenged. Using information collected by volunteers in their communities, some children developed other systemic morbidities after surgery such as psychiatric disorders (5 children), renal failure (2 children), cardiopathies (4 children), spastic paraplegia (5 children), and diabetes mellitus (2 children).

Financial support for surgery and follow-up

The CBR program received some grants from nongovernmental organizations (NGOs) to increase identification and to cover surgical costs in 2002, 2007, and 2014. For the 705 children who underwent surgery, the CBR program subsidized the total cost of surgery in 580 children (82.3%) and covered partial surgery costs in 125 children (17.7%) at Saint Joseph Hospital.


   Discussion Top


Magnitude of pediatric cataract

According to the WHO estimates, in a district of one million inhabitants, without community programs, there are likely to be approximately 100 children with pediatric cataract.[5]

Considering that in DRC, children aged 0–15 years represent 42% of the population, in a population of 1 million, there would be about 420,000 children. Using the prevalence of blindness/or SVI of 1/1000 children in developing countries, there are an estimated 100 children with blindness/SVI per 100,000 population.[6] Then, for 420,000 children population, there should be an estimated 420 children with blindness/SVI. In this study, the CBR program covered a catchment area population of 4,083,052 inhabitants, so there should be an estimated of 1715 children with blindness/SVI. The CBR program identified 1277 children with cataract blindness, which is within the estimate of 1715 blind children.

This implies that the CBR program was successful in identifying a large proportion of children with blindness/SVI. The incidence of congenital cataract has also been estimated by WHO at approximately 20 children per 1 million total populations per year.[4],[5] In this study, we found the estimates of incident cases of about 18 children with cataract per year per million inhabitant. Our findings were nearly the same as the WHO estimates.

Integration of volunteers in the program

Volunteers were parishioners selected by the parish authorities to serve the community. Like other community workers/key informants, volunteers should be morally and socially accepted by their community members to permit acceptance by parents for their children to be examined.[7],[8],[9] Volunteers in this study, as they were not medical personnel, could not examine children or receive a high-level training in eye diseases. We taught them how to recognize a normal eye and an abnormal eye telling them that the whitish part of the eye should remain white and the black part of the eye should not change color, and the two globes should fixate an object in a parallel gaze. We provided them with some basic knowledge of the Vision 2020 targeted diseases in simple language because generally they only achieved a low level of education.

Ophthalmic nurses examined children only using the lamp-torch to rule out cataract. They did not need to measure vision or undertake other clinical examination as the diagnosis was made by the pediatric ophthalmologist. This strategy made the screening work easier and did not require any equipment to be transported to the communities.

Many children did not attend the CBR center after identification for onward referral. The CBR program attempted to locate these children with visits to their parents in the city quartiers. Some families had moved out or changed addresses, some children had died before the uptake, and other parents refused to bring their children for treatment.

Volunteers did not receive any financial incentive from the CBR program according to the church rules, but sometimes, they received work uniforms and other social consideration.

The greatest numbers of children screened in the community occurred in the reported years (2002, 2007, 2008, and 2017) which are probably explained by the fact that during those periods of time the CBR program benefited from several international/financial support programs helping to mobilize more children with blindness/SVI in the community. The fluctuations in the number of patients examined reflect the fact that various NGOs supported these activities with minor amounts of money at different times. Sometimes, there was not enough financial help for families with children with cataract to support adequate surgical procedures at the time of identification.

To increase the number of screened children and to keep it constant over the years, more trained volunteers are needed (<4 per parish) and the catchment area has to be expanded on the remaining parishes to overcome the backlog of cataract blinding children in need of eye care services.

In Bangladesh, bilateral-untreated cataract was identified most commonly in children.[10] Kilangalanga et al. demonstrated in a hospital-based study that untreated bilateral cataract was more frequent (90%) than unilateral in children in Kinshasa.[11] A review of literature suggests that the prevalence of bilateral cataract is twice that of unilateral cataract in children.[12],[13],[14] The great number of pediatric cataract in this series could be explained by the fact that before 2000, there was no community-based childhood blindness program in Kinshasa, by the shortage of pediatric cataract services, and therefore a great number of untreated children who could not reach any eyecare services. Another reason could be parent's priority to treat children suffering from bilateral cataract blindness in comparison to those with unilateral cataract, where one eye is able to see. Furthermore, even in industrialized countries, visual prognosis of treated congenital unilateral cataract in children is poor if surgery was performed after the critical age of 2 months.[15],[16]

Referral and surgery

Overall, 92 children (7.2%) died after community identification. In fact, it is reported that many of the blinding conditions in childhood, particularly in developing countries, are associated with a high mortality rate (e.g., measles, infection, rubella, vitamin a deficiency disease (VADD), meningitis, head injury, cerebral tumors, and retinoblastoma).[17] In 36 children (2.8%) aged between 2 and 5 years belonging to 14 known families, there was a positive history of familial cataract. A cross-sectional study conducted of 70 children with diagnosed pediatric cataract at Saint Joseph Hospital found a family associated history of cataract in 14 cases (20%). A study determining possible gene mutations in those 14 families is recommended to further elucidate the etiology of these familial cataracts.

Before 2000, there was a fatalistic approach in the cataract uptake process in Kinshasa, so few children attended the eye clinic for surgery. With the community-based approach, this trend changed from the fatalistic to a rational and interventional approach offering services to numerous blind children. Even though the CBR approach referred children to the tertiary eye health facility, 107 children did not present to the CBR center for referral to the specialized clinic. Reasons reported by volunteers who went to the families were that some of them moved from one place to another, others returned back to their province of origin, some were operated elsewhere, and some refused to come to the CBR center. A further study assessing barriers to the cataract uptake is recommended to improve access to eye care services and referral.

In this study, the CBR program working in a faith-based engagement and using volunteers succeeded to identify children with cataract in the community. In other studies, key informants were successfully used to identify children with blindness in the community and they were more efficient than health workers, but key informants could not be permanently available for a long-term program.[5],[12],[18] This study suggested the use of volunteers on a faith-committed basis that ensured sustainability and regularity of actions.

Financing surgery cost

At Saint Joseph Hospital, the direct costs of cataract intervention was about 220 US$ without considering that the child should also be followed up for a long-term period and even all his lifetime. Additional and indirect costs were needed (transportation for each visit, medication and glasses, and re-intervention) and increased the real cost that was finally unaffordable from most families in Kinshasa. Funds received from several charitable organizations permitted children not only to have access to eye care services and to have glasses and low-vision devices but also to be integrated into normal and integrated schools. In India, where the CBR approach was also used, the costs of a pediatric cataract intervention were in the order of 100–200 US$, depending on facilities like in our system.[19]

The costs of surgery in a tertiary pediatric eye care center are beyond the capacity of most of individuals in developing countries as seen in Kinshasa, where most children are from low-income families. The increasing availability of health insurance plans in Africa is going to offer an opportunity to increase access to pediatric cataract surgery [20] and hopefully also in our settings to overcome cataract-related childhood blindness.


   Conclusion Top


A church-based CBR program has proved successful and efficient in identification and referral of pediatric cataract blinding patients from the community. To increase the success of the CBR program, its activity and scope need to be extended to cover the entire city, and there is a need to train more volunteers for the screening work. Further work needs to be done to assess common barriers to the uptake of cataract surgery and to overcome those barriers enabling more children in need to access eye health facilities.

Acknowledgment

We thank all NGOs and personalities for the funds they donated to the CBR program to support the identification work of children with cataract in the community and to afford surgeries costs and the postoperative follow-up process as well (CBM International, Enfance Missionnaire, Italy, BMZ/HDL, Women Club International, Lord Ashcroft Fund, Liliane Funds).

Financial support and sponsorship

The program was funded by the University of Rostock and the Christoffel-Blindenmission (Third-Party Funds 892037, University of Rostock, Africa-Project). Both support the project in Kinshasa, Democratic Republic of the Congo.

Conflicts of interest

There are no conflicts of interest.



 
   References Top

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Knappe S, Schittkowski M, Schröder W, Hopkins A, Fichter N, Guthoff R, et al. The currently most common causes of childhood blindness in Kinshasa (D. R. Congo). Klin Monbl Augenheilkd 2007;224:597-602.  Back to cited text no. 1
    
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