Corneal diseases constitute a significant cause of visual impairment and blindness in the developing world.12 Corneal diseases including keratitis or trauma resulting in corneal scarring are a major cause of bilateral or unilateral blindness and visual impairment in children and young adults.3 The Andhra Pradesh Eye Disease Study (APEDS) conducted in the State of Andhra Pradesh, southern India, reported the prevalence of corneal blindness at 0.13% (95% CI: 0.06-0.24), constituting 9% of all blindness.4 APEDS also suggested a significant burden of corneal blindness in the rural population of Andhra Pradesh, of which 95% was avoidable. The major causes of corneal blindness globally include trachoma, corneal ulceration following xerophthalmia due to vitamin-A deficiency, ophthalmia neonatorum, use of harmful traditional eye medicines, onchocerciasis, leprosy and ocular trauma.5 Although strategies to prevent corneal blindness are likely to be more cost-effective, visual rehabilitation by corneal transplantation remains the major treatment for restoring sight in those who already have corneal blindness.
According to the Eye Bank Association of India, the current cornea procurement rate in India is 22,000 per year. It is estimated that a significant proportion of donor corneas are unsuitable for corneal transplantation.6 Based upon our current ratio of available safe donor eyes, we would need 277,000 donor eyes to perform 100,000 corneal transplants in a year in India.7 This is approximately a 20-fold increase from the donor eyes available now. Shortage of transplantable corneas is common and has been the subject of much attention. To increase procurement of corneas, raising the level of public education on eye donation is an important first step. Soliciting for actual eye donation at the time of family death is a necessary and accepted practice.7 Though the factors affecting procurement of corneas and the public attitude towards eye donation have recently received attention in the developed world,8 not much has been published from the developing world.7
We report the awareness of eye donation and willingness to pledge eyes in a rural population in southern India.
Materials and Methods
The detailed methodology of APEDS as well as awareness of eye donation in the urban population of the Indian state of Andhra Pradesh has been described elsewhere.6,9 Briefly, a systematic, cluster, stratified random sampling procedure was used to select 70 clusters from three rural areas from the Indian state of Andhra Pradesh, to obtain a study sample representative of the socioeconomic distribution of the population of the state. These areas were located in (1) West Godavari (prosperous rural), (2) Adilabad, and (3) Mahabubnagar districts (poor rural). APEDS was conducted between 1996 and 2000. For the rural segments of APEDS, a total of 8,832 subjects were sampled of which a total of 7,775 eligible participants were interviewed by trained investigators. Before going through the clinical examination, subjects above 15 years of age responded to a structured questionnaire on eye donation. All the subjects above the age of 15 were asked the question Have you heard about eye donation? Subjects who responded that they heard about eye donation were further asked about the purpose of the donated eye. Awareness was defined as having heard of eye donation. Knowledge was defined as “if the subject had some understanding about the use of the donated eye like replacing a part of another eye or for replacing the cornea of another eye”. All the subjects who had heard about eye donation were asked about their willingness to pledge eyes for donation.
Statistical analysis was done with SPSS (SPSS for Windows, Rel 11.0; 2002. SPSS Inc, Chicago, IL, USA) software. The relationships between awareness of eye donation and willingness to donate eyes and demographic factors such as age, gender, socioeconomic status, education and religion were assessed using the univariate Chi-square test, followed by multivariate analysis using multiple logistic regression. Using the first or last category as the reference assessed the effect of each category of a multicategory variable. A two-tailed ’P’ value of less than 0.05 was considered statistically significant. The prevalence rates were adjusted for the estimated age and gender distribution of the population in India for the year 2000 (http://www.census.gov). The design effect (DE) of the sampling strategy was calculated using the prevalence estimates in each cluster and the 95% confidence intervals (CI) of the estimates were calculated by assuming normal approximation of binomial distribution for prevalence of 1% or more and Poisson distribution10 for prevalence less than 1%.
A total of 7,775 subjects were interviewed in three rural areas of Andhra Pradesh, representing a participation rate of 88% of the eligible population. Data were analysed for 5,572 (71.7%) subjects who were above 15 years. Of these, 3,011 (54%) were females; 5,318 (95.4%) were Hindus. Responses to the awareness questionnaire are presented in Table 1. A total of 1,561 (28.0%) subjects were aware of eye donation. Age-gender-adjusted prevalence of awareness of eye donation was 30.7% (95% CI: 29.5 - 31.9; DE 14.2). One hundred and eighty (11.5%) subjects had knowledge about eye donation. The source of information for awareness of eye donation was the mass media in 1,237 (79.2%) subjects and a family member, relative or friend in 297 (19.0%) subjects (Table 1). On multiple logistic regression analysis (Table 2), awareness of eye donation was significantly higher in subjects 30-69 years old and significantly lower among those aged 70 years or more (OR 0.7; 95% CI: 0.6-0.8), illiterate subjects (OR 0.2; 95% CI: 0.1-0.2), females (OR 0.8; 95% CI: 0.7-0.9), subjects of lower socioeconomic status (OR 0.4; 95% CI: 0.3-0.4) and Christians (OR 0.2; 95% CI: 0.1-0.6).
Of the 5,572 subjects, only 8 (0.5%) had pledged eyes, an age-gender-adjusted prevalence of 0.1% (95% CI: 0.05 - 0.25; DE 1.4). Responses to the willingness questionnaire for 1,561 subjects are presented in Table 3. 516 (32.9%) subjects were willing to pledge to donate their eyes, an age-gender-adjusted prevalence of 10.9% (95% CI: 10.1 - 11.7; DE 8.9). Among the subjects willing to pledge their eyes for donation 91.2% were literates. Among those who were aware of eye donation, 789 (50.6%) subjects needed more information about eye donation to decide whether or not to pledge their eyes and 70% of them were literates. On applying multiple logistic regression analysis (Table 4), willingness to pledge eyes for donation was significantly lower in illiterates (OR 0.2; 95% CI: 0.2-0.3) and the willingness to pledge eyes was significantly higher among those between the ages of 60 - 69 years (OR 1.68; 95% CI: 1.07-2.62).
Although the large proportion of corneal blindness adds to the social and economic burden every year, eye banking in India is at a nascent stage. According to 2001 population estimates (http://www.censusindia.net/results/summaryindia.html), India has a rural population of 148 million, and of whom approximately 91,000 people are blind due to corneal problems.4 It is estimated that approximately 190,000 persons in India are blind from bilateral corneal disease.11 Every year another 20,000 new cases join the existing backlog.12 Despite the fact that corneal transplantation is probably the most successful of all organ transplant procedures, offering the potential for sight restoration to those who are blind from corneal diseases and the current corneal procurement rates are inadequate to meet the transplantation needs in India.6
Data from our study show that there is a definite under utilisation of the potential to obtain corneas as 30.7% of the Indian population were aware of eye donation but only 0.1% of them had pledged their eyes. Knowledge of the usage of donated eyes was very poor despite reasonable awareness of eye donation. This indicates that, there is a gross inadequacy of media publicity on the entire cycle of eye donation in this population. In order to transform this awareness into the pledging and procurement of more corneas, knowledge of all steps of eye donation must be increased. Our data also suggests that though literates were more aware of eye donation, only a few had actually taken the step of pledging their eyes. A similar result was found in a preliminary survey conducted by the Aravind Eye Care System on the level of awareness of eye donations in an adult population of the state of Tamil Nadu in southern India.13 Females were less willing to pledge eyes even though they were more aware of eye donation. Awareness of eye donation and willingness to pledge eyes was significantly higher among those 60-69 years old compared to the age group less than 60 years old. We did not find any significant association between gender, socioeconomic status and willingness to donate eyes.
Despite a sizeable proportion of the population being aware about eye donation in rural India, failure to pledge eyes could be due to lack of knowledge and purpose of eye donation. It may be construed that lack of awareness becomes a major obstacle to convince and obtain consent for eye donation. The need of the hour is to target literates and those who say they require more information to decide. They should be provided with additional detailed information through various formal and informal means. The information should do well on (i) when to donate eyes, (ii) how to become a pledged eye donor, (iii) how this pledge can be translated into actual eye donation, (iv) the importance of discussing the issue with family members and (v) importance of discussion after pledging and signing a donor card for eye donation. The public should also be informed that, this is a simple procedure done only after death, within 6 to 8 hours, and causes no disfigurement.
On the other hand, it is morally binding on all of us to motivate rural illiterates as well since they constitute a higher proportion of the rural population. It might be a good idea, if managers of movie theatres are motivated to present a video show on the importance and reasonable details of eye donation at the time of screening the movie. This could have a greater impact should this presentation be made by a prominent film star or prominent sports person.
There is also a great need to educate students in all fields, particularly those in the medical profession about eye donation, so as to enable the younger generation to act as future motivators for enhancing eye donation rates.14 Grief counseling of relatives by hospital medical staff following death in the hospitals has been successful in procuring organs.1516 Even if the deceased is a pledged donor, the consent of family members is important at the time of death. Thus, ultimately it is the family of the potential donor who must be positively influenced to enhance eye donation rates. Studies have shown that training of staff is significantly associated with higher rates of donation.17 In order to accomplish this, it is very important for the involvement of the governmental and non-governmental organizations in training the hospital medical staff, nurses and counselors in approaching and motivating positively the next of the kin of the deceased for eye donation whenever there is a death.
Strategies that have worked well in other parts of the world may be useful here too. For example, in USA the Presumed Consent Law was introduced in 1975. This concept has legal sanction, where, if the dead person has not registered any objection to donate while alive, consent is presumed and eyes can be removed as required. This legislation has led to a manifold increase in the availability of corneal tissue.18 In India we do not yet have such legislation; the government should introduce the concept of “ presumed consent” to boost eye donations. Such legislation would emphasize the government’s commitment to the cause of eye donation. Another area of legislation is the “ required request law” wherein it becomes mandatory for all health care staff institutions coming into contact with bereaved families to make a request for eye donation. This requires legal sanction.
In conclusion, the data from our study suggest that to translate awareness into action appropriate strategies have to be developed to increase the knowledge about eye donation. It is encouraging that the age group most likely to pledge eyes is 60-69 years, and this is the group that is actually more willing to provide their eyes. While planning appropriate strategies to enhance eye donation, the focus should be on rural literates, those who indicate that they want more information and persons older than 60 years.
Source of Support:
Conflict of Interest:
Hyderabad Eye Research Foundation, Hyderabad and Christoffel Blindmission, Benshein, Germany.
The authors gratefully acknowledge the APEDS team.
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