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Women around the world share high prevalence of blindness
A network of outreach programs aimed at reducing preventable blindness in women abounds in developing countries, but few organizations are in place in developed countries.
Women in developed and developing countries might not share the same health care practices, but they do share a similar high prevalence of blindness compared to men.
A meta-analysis of more than 70 epidemiological studies on blindness from the past 20 years revealed that women make up the majority of the world’s blind population. Global statistics from the World Health Organization estimate that 150 million people are currently living with low vision and more than 44 million are blind worldwide. Two-thirds of the population suffering from visual impairment are women. In the United States, women constitute 2.3 million out of a total of 3.4 million visually impaired persons.
Clinicians were surprised that women develop blindness at the same rate — 1.5 times more than men — in both developed and developing countries.
“Of the 1 million blind people in the United States, over 700,000 of them are women,” Ilene K. Gipson, PhD, director of the Women’s Eye Health Task Force, a newly formed educational outreach organization for women’s eye health based at the Schepens Eye Research Institute, told Ocular Surgery News.
In the United States, 2.3 million women are visually impaired out of a total of 3.4 million Americans.
“It’s quite shocking. Up till now, no one knew the problem existed. People were unaware of the huge visual disparity between the sexes,” said Dr. Gipson, a Harvard Medical School professor of ophthalmology.
She said the higher risk for women is evident in both developed and developing countries. While the percentage of visual impairment varies in each population by age group with more blind older women in developed countries, the overall discrepancy between men and women remains the same around the world.
“You might suppose these statistics to be evident just in the developing world, where there are problems with poverty, sanitation and access to care. Though the reasons are different here, we still have the same prevalence in the United States,” Dr. Gipson said.
Study spurs assistance
Numerous outreach programs funded by federal governments, universal organizations and independent sponsors have provided eye care to developing countries. Despite the backlog of cataract cases in Africa, Asia and Latin America, which are hindering the WHO’s Vision 2020 goal of eliminating avoidable blindness by 2020, substantial efforts have been made.
With the recent data on the increased risk for women, programs specifically designed for and aggressively targeted at women are on the rise.
Paul Courtright, DrPH, lead investigator of the meta-analysis of population-based prevalence surveys and a co-director of the Kilimanjaro Centre for Community Ophthalmology at Tumaini University, is a key figure in the effort to reduce the incidence of blindness in women. Dr. Courtright leads a gender-oriented outreach program in Moshi, Tanzania, and is a worldwide advocate for the closing of the vision gap.
“Worldwide, two out of three blind people are women,” he said. His research, developed in part with his wife, ophthalmologist Susan Lewallen, MD, and colleagues, Ken L. Bassett, MD PhD, and Iman Abou-Gareeb, MD, from the British Columbia Centre for Epidemiologic and International Ophthalmology, appeared in Ophthalmic Epidemiology in February 2001.
The study found that women make up 64.5% of the world’s blind population. In developed countries, factors such as increasing life expectancy, hormone supplements and environmental factors may increase the risk. In developing countries, however, women are at an increased risk regardless of age, life expectancy or disease. They are at risk because of their poor utilization of health care services.
Patriarch prohibits care
“We have found that there is a lack of utilization that exists within every developing society,” Dr. Courtright said. The reasons for this vary among different tribal cultures, but Dr. Courtright believes the problem stems from inability to travel to a surgical facility, inadequate access to household financial resources, lack of access to educational and informational resources, and little cultural value placed on Western advances.
Most significant is the influence of the primary head of the household, he said.
“The decision making for health care is not made strictly by the individual that has the disease or condition,” Dr. Courtright said. “It is made by the man of the household.” Dr. Courtright has found social structures within families to be a barrier to accessing care and perhaps the biggest reason for women’s lack of treatment.
“At our hospital (KCMC), 75% to 80% of the men coming in for cataract surgery are married. Of the women, only about 40% of them are married. Sixty percent are widowed,” he said. According to Dr. Courtright, most men, as leaders of their families, decide that they should be the ones to receive proper medical attention.
Because the fee for traveling to a medical center may cost more than an entire month’s pay, families must be frugal and save money for more immediate costs. “There is never enough money, and if there is, the men are more inclined to use it,” Dr. Bassett said. “There is almost always a social circumstance with men still dominant in terms of money and opportunity.”
As a result, Drs. Courtright and Lewallen, co-directors of the Kilimanjaro Centre for Community Ophthalmology (KCCO), have restructured their outreach programs to target women early and aggressively.
Programs aimed at men
KCMC Hospital and the Ministry of Health jointly provide services for 1.5 million inhabitants of the Kilimanjaro region of Tanzania, performing 700 cataract surgeries per year.
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“This is a gross underestimate of the need. But our numbers are growing and we expect to do 1,500 in 2003,” Dr. Courtright said. A goal of performing 3,000 cataract surgeries per year — with at least 60% in female patients — would lighten the backlog of cataract surgery in the region, he said.
New approaches to dealing with communities have evolved in light of the recent data, Dr. Bassett said. “We are studying the population, looking at their needs, looking at their progress and trying to develop gender equitable programs. The innovation is not to develop one program, but to develop two: one for women and one for men,” said Dr. Bassett, senior medical consultant at the University of British Columbia Centre for Health Services and Policy Research and director of the British Columbia Centre for Epidemiologic and International Ophthalmology.
At the KCCO, programs specifically aimed at women begin with men. “We have to work through the husband and the male leaders of a community to get them to realize the value of cataract surgery,” Dr. Courtright said. In most African households and communities, he said, women do the bulk of the housework and labor-intensive activities.
“We repackaged how we promote cataract surgery so that men see the advantages as it pertains to them. We discuss it in terms of sight-restoring surgery for their wives and mothers, who will be able to participate more fully in the household,” Dr. Courtright.
“It’s sad, but we have to package it this way,” Dr. Bassett said. “It has worked very well, and we have more and more married women coming in for surgery because of it.”
Community strengthens care
Another component of the Kilimanjaro strategy has been the creation of screening sites.
“We create a bridge between the communities and the hospitals, whereby we send a team out to selected areas every few months to screen people for cataract and other diseases,” Dr. Courtright said. These special teams of doctors, counselors and paramedical workers will transport patients back to the center for surgery as a group.
“Women come with their friends and family, so it makes it easier for them. Most women would find it quite frightening to get on a bus, go to a hospital and have surgery all on their own,” Dr. Courtright said. “They just won’t do it.”
Researchers have learned that working within the community and targeting groups will encourage public conversation and camaraderie. “People will talk. We find that friends will tell other friends and word spreads quickly,” Dr. Courtright said. Women who have had the surgery are more likely to know another woman who has had the surgery, he said, and this reduces the fear factor.
Gaining trust
Another tactic of gender-based programs is using family counselors. At the KCCO, directors enlist the help of a female domestic counselor to speak intimately with potential patients. “This has been extremely helpful in terms of convincing male members of the household the value of surgery,” Dr. Courtright said.
A counselor will sit individually with a patient and relatives and provide information about the procedure in a sensitive, reassuring manner, he said. “She is not talking to them as a clinician, she is talking to them as a friend. This is more effective than a doctor ever will be because a doctor is perceived as a frightening person,” Dr. Courtright said.
The strategies practiced at KCCO are also being applied in other parts of Africa and Asia. A similar program is starting in Egypt. With the help of WHO’s Vision 2020 campaign, the Seva Foundation, Helen Keller International and other organizations, he is trying to create a web to link together providers, researchers and training institutions.
“We are trying to develop interventions that are not just going to be useful for eye diseases but for all areas of health care, in terms of helping communities to recognize gender differences,” Dr. Courtright said.
Help for developed countries
The efforts of Drs. Courtright, Lewallen and Bassett would not be possible without adequate funding. Funding for the KCCO program is a direct result of the Canadian government’s Global Health Research Initiative.
While funds are entrusted yearly to continue educational and surgical outreach programs such as these, Dr. Bassett said that there is little funding for research in his own country.
“The problem that we face as epidemiologists is that there is almost no money to study this problem which exists for women in industrialized countries,” Dr. Bassett said. “We can get a lot of funding from the Canadian government to go and study elsewhere because there is now recognition for the need to support international research. But we can get no funding to study here.”
Dr. Gipson agreed, attributing the problem to a perceived Western arrogance. “We develop other countries, thinking that we are so much better off,” she said.
These factors mean the problem of increased blindness and low vision in North American women has yet to be tackled.
Perceiving a problem
“What really needs to do be done is to take good epidemiological data from these regions and break it down by sex and age,” Dr. Courtright said. “By doing that, I think we will have a better sense as to what patterns exist within the industrialized countries and what might be some of the reasons for that.”
How to help
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It was 2 years ago when Dr. Courtright analyzed such data for his study, finding answers to questions concerning the reasons for increased rates of visual impairment in women of developing nations.
Dr. Gipson said the data “shocked” Western clinicians who heard about it.
“Unfortunately, this data was not broadly disseminated. Even today, not many ophthalmologists know that this increased prevalence exists for women in the United States,” Dr. Gipson said. In 2001, Dr. Gipson and colleagues had been studying the reasons behind an increased risk of dry eye and autoimmune disease in women at the Schepens Eye Research Institute in Boston, where she is a senior scientist.
“At first, I wasn’t sure if this was a topic worth pursuing. I didn’t think the issue was significant until we read Dr. Courtright’s study,” Dr. Gipson said. However, once she learned that women make up two-thirds of the blind population in North America, Dr. Gipson named an executive committee (Debra A. Schaumberg, ScD, MPH, and Alice Adler, PhD, both affiliated with Harvard Medical School, and Janine A. Smith, MD, of the National Eye Institute), and her colleagues set a program into motion.
“Up until then, there had not been a public-education activity towards this issue. We wanted to form a task force as an educational outreach organization for women. That’s just what we did,” she said. In 2001, the Women’s Eye Health Task Force (WEHTF) was founded.
Tackling Western prevalence
With help from the Lions Clubs International and Schepens Eye Research Institute, the WEHTF provides women with information on their risk of eye diseases and tips on eye care for themselves and their children.
“Since women are the primary caretakers and caregivers of their family, including their elderly parents, we have developed some checklists for them to make sure that they, their children and elderly parents are receiving the proper care,” Dr. Gipson said. She said that her organization not only alerts women to their increased incidence, but it also educates them on how they can reduce that risk by not smoking, maintaining a healthy diet, scheduling regular family doctor’s visits and knowing their family history of eye disease.
The WEHTF national advisory committee, a team of ophthalmologists, optometrists and health care professionals, actively participates in programs aimed at educating women regarding their increased risks of dry eye syndrome, autoimmune diseases such as Sjögren’s syndrome, age-related macular degeneration and some forms of cataract.
While much has been done to combat the incidence on an educational level, research into the biological and social factors has yet to produce concrete answers.
“No one really knows why women have a higher prevalence than men. At this point, it’s hard to pinpoint social reasons and biological reasons that are still being investigated,” Dr. Gipson said. She said that women’s longevity may explain much of the burden, but hormonal differences may also be contributing.
Social strategies work
In 2001, WEHTF member Dr. Schaumberg found a link between hormone replacement therapy (HRT) and dry eye syndrome. Her 3-year study, published in the Journal of the American Medical Association, suggested that postmenopausal women who take the popular HRT, particularly estrogen, are at an increased risk for dry eye. However, Dr. Gipson said that the prevalence is also high in women who do not take HRT.
“Certainly, more studies need to be done on various levels to determine the reasons for this incidence,” Dr. Gipson said.
However, according to Dr. Bassett, the focus needs to be placed on research that will garner immediate results in the field. At present, he has taken the KCCO model to Canada (with his own money) and is providing free low-vision services to women who are at risk.
“Our research shows that what matters in helping women are the social circumstances in the context. It’s not a biological issue,” Dr. Bassett said. “It needs to be stressed that we can do a lot more good in the next 10 years by developing programs that facilitate women and men separately. The biological aspect, though important, may not be solved for another 100 years.”
In order to make an immediate impact on the problem, he said, researchers must develop community-based and social programs with the hope that the network of eye care in developed countries exclusively for women may equal that of the pursuits already occurring in developing countries.
For Your Information:
- Ilene K. Gipson, PhD, professor of ophthalmology at Harvard Medical School, can be reached at the Schepens Eye Research Institute, 20 Staniford St., Boston, MA 02114; +(1) 617-912-0210; fax: +(1) 617-912-0126; e-mail: gipson@vision.eri.harvard.edu.
- Paul Courtright, DrPH, epidemiologist and co-director of the Kilimanjaro Centre for Community Ophthalmology, can be reached at KCCO, P.O. Box 2254, Moshi, Tanzania; +(255) 27-2753547; fax: +(255) 27-2753598; e-mail: kcco@kcmc.ac.tz.
- Ken L. Bassett, MD, PhD, director of the British Columbia Centre for Epidemologic and International Ophthalmology and senior medical consultant at the University of British Columbia Centre for Health Services and Policy Research, can be reached at 429-2194 Health Sciences Mall, Vancouver, British Columbia, V6T 1Z3 Canada; +(1) 604-822-1949; fax: +(1) 604-822-5690; e-mail: bassett@chspr.ubc.ca.
References:
- Abou-Gareeb I, Lewallen S, Bassett K, Courtright P. Gender and blindness: a meta-analysis of population-based prevalence surveys. Ophthalmic Epidemiol. February 2001;8(1):39-56.
- Schaumberg DA, Buring JE, Sullivan DA, Dana MR. Hormone replacement therapy and dry eye syndrome. JAMA. November 7, 2001;286(17):2114-2119.