Cervical Cancer In Uganda – Stats and more – a glimpse into our project
Reported, December 15, 2011
Screening programs have successfully reduced cervical cancer mortality rates and the incidence of advanced disease in industrialized nations around the world. In the United States, incidence and mortality from cervical cancer was reduced by 74% between 1955 and 1992 with the introduction of PAP smear screening programs (cite). However, in Uganda as well as all over Sub-Saharan Africa, throughout Latin America and Southeast Asia, women continue to die from this preventable disease. In fact, cervical cancer is the most preventable cancer worldwide, and the number one cause of cancer death among women around the world (3), including Uganda(1). Over 500,000 new cases are diagnosed each year worldwide (1), with 80% occurring in developing countries. (2) East, Central, and South Africa carry the highest age standardized death rates from cervical cancer, with Zimbabwe and Uganda leading the region with the highest mortality. In 1997, 67/100,000 women died from cervical cancer in Zimbabwe and 40.8/100,000 women died in Uganda, compared to US To put this number in perspective; consider tuberculosis, a disease which has received much international attention. Tuberculosis carries an age-standardized death rate among men and women of 63/100,000 in Uganda(10). Despite the similar mortality rates and preventability of the two diseases, TB receives worldwide attention and United Nation funding, while cervical cancer is largely ignored. Our study hopes to identify some of the barriers that exist to decreasing rates of cervical cancer in Uganda, a country known throughout the world for its success at controlling the HIV epidemic.
If cervical cancer is preventable, why are so many women dying from this disease? The World Health Organization estimates that less than 5% of women in developing countries are screened appropriately for cervical cancer versus 45-50% of women in industrialized countries. A study done in 1997 looking at cervical cancer diagnosis and treatment in various levels of hospital care in Kenya, Listhoto, Uganda, Tanzania, and Zimbabwe, showed that most clinics did have the necessary equipment to perform PAP smears, but none had policies in place to encourage screening.
In the primary health centers throughout the five East, Central and Southern African countries, 70% had resources to perform speculum exams and 80% of the workers knew what a PAP smear was. Despite this awareness, only 17% of the clinics had performed at least one PAP smear in the preceding 6 months, and 31% admitted to diagnosing at least 2 cases of invasive cervical cancer in the preceding year. Reasons given for lack of screening were lack of policy guidelines, frequent shortage of supplies and difficulty and cost of getting the cytology to a qualified pathologist.
At the district hospital levels throughout Sub-Saharan Africa, 99% of the hospitals had all the necessary materials for screening but overall, only 52% were carrying out cervical cancer screening programs. Uganda lagged behind with only 15% of Ugandas district hospitals performing screening. On average, the hospitals performed only 24 smears / month with an average wait time of 4 weeks for results.
At the tertiary hospital level, more promising results were encountered. All facilities had screening and treatment options available. The largest barrier was lack of technicians to read results. More than 50% of patients were diagnosed with cancer beyond stage 3, leaving radiation as the only treatment option. However, in Kenya and Tanzania, each with a population of over 30 million people, there is one radiation technologist. The study concludes that cervical cancer screening could be implemented down to the most basic clinic level if screening policies are implemented and more pathologists trained.
The study also notes that the women who were found to have had PAP smears may not have been the ideal candidates in whom to detect precancerous lesions. Of the women screened in the tertiary hospitals, most were screened by chance at prenatal or post-natal visits, often in women too young to catch any pre-cancerous disease or in older women already symptomatic harboring invasive disease; most likely out of the range of treatable disease. The lack of cervical cancer screening policy guidelines throughout East, Central and South Africa led to insufficient or inappropriate screening. (2)
At Mulago Hospital, the major teaching hospital in Uganda, a survey of knowledge, attitudes and practices on cervical cancer screening was administered among the medical workers, including doctors, medical students, nurses and social workers. Most participants routinely managed female patients and had performed vaginal examinations.
The majority of participants knew about cervical cancer and its gravity. 93% of medical personnel considered cervical cancer to be a public health problem. The majority (83%) knew what a PAP smear was, and 81% knew cervical cancer was curable if detected at an early stage and that PAP screening could detect early lesions. However, despite this knowledge, 78% of health care personnel had never asked patients if they had been screened for cervical cancer and had never referred patients for screening. Only 19% of female medical workers had ever had any kind of cervical cancer screening test done. Only 29% knew of the correct risk factors for cervical cancer and 65% of female medical workers did not think they were susceptible to cervical cancer themselves. (1)
Despite speculums being readily available at Mulago teaching hospital, only 12% of participants who examined women regularly had used a speculum. Among final year Ugandan medical students, 87% had never performed a PAP smear, 56% had never performed a speculum exam, and 22% felt that speculum exams should be performed by senior doctors only. Only 14% of graduating Ugandan medical students felt skilled enough to use a speculum. Reasons commonly given for why screening was not performed was lack of a speculum, medical students felt they were not allowed or staff did not know how to use them.
From these studies, we can see that there is a serious lack in education of what cervical cancer is, its risk factors and how to accurately diagnose and treat cervical cancer in its early stages, when treatment is curative. The studies mentioned evaluated medical personnel, people expected to be more knowledgeable than the average citizen. We expect even lower rates of awareness in rural areas, where health care is less accessible.
From our short time in Kisoro, Uganda, all issues of female empowerment, such as domestic violence, family size, and sexually transmitted diseases including HIV seem to disproportionately affect women. Since cervical cancer is caused by a sexually transmitted disease and involves open discussion about the female reproductive organs, it is not surprising that people, even when adequately informed about risks of cervical cancer, do not come for screening. The local language, Rufumbira, lacks any word for cervix, and the word vagina is a shameful / embarrassing word, and instead female private part is replaced during translation.
Ugandas HIV experience highlights the gender health disparities in the country. Uganda surpassed all expectations when the countrys HIV rates decreased from 30% to less than 6% between 1992 to 2002. Since that time the rate has slightly increased, disproportionately affecting young women. 57% of all HIV affected individuals in Uganda are women, 76% of those are young women. The biggest risk factor for young women contracting HIV is not promiscuity or prostitution, but marriage. Four out of five new infections of women result from sex with their husband or a primary partner. 25% of South African men believe sex with a virgin will cure AIDS. (citation!!!)
Well studied and proven facts as to why Africa is so burdened with HIV is attributed to poverty, high rate of sexually transmitted diseases, low status of women, sexual violence and ineffective leadership (Cite!). Due to these factors, Africa holds 70% of the worlds burden of HIV, while having only 10% of the worlds population. We hypothesize that these same factors may be implicated in the higher rates of cervical cancer in this region. (4)
The low status of women and poverty appear to be the most imposing challenges to adequate health care and attention to womens issues. Uganda has enacted female affirmative action in many ways to address such problems. However these policies often do not extend to the most marginalized women, those who live and work in the most rural areas.
The marginalization of women manifests itself in a variety of ways. In a recent survey, 41% of women attending an antenatal clinic in Mulago hospital had been physically assaulted in the year before conception, and the Ugandan Human Rights Commissioner, was quoted as saying, forced sex in marriage is rampant because it is not recognized by Ugandan Law. (6) According to the most recent census data from Uganda 59.1% of rural women are illiterate compared to 29.5% of rural men (8). Maternal mortality is astonishingly high at 1100/100000 births. (10) This stands in sharp contrast to the US Maternal Mortality Rate of 8 maternal deaths per 100000 births. (9) Among 15-19 year old women in Uganda, 21% are pregnant before their 20th birthday. (10) Although the fertility rate is high throughout Uganda at approximately 7.1 live births per every mother (10), the Kisoro District harbors even higher rates of fertility and far lower rates of contraception. (Chriss blue book) In 1995, 86,6% of sexually active women were not using contraception. (9)
The barriers to empowering women to take control of their health care are overwhelmingly high in a country so burdened by socioeconomic distress. However it is precisely such a place where a small amount of education could have a huge impact.
Since the recent integration of Albert Einstein College of Medicine students into the Village Health Worker Project, awareness of the lack of cervical cancer screening programs has come to the attention of several students, and Prevention International No Cervical Cancer (PINCC), was contacted. PINCC is a non-profit organization started in 2004, by Dr. Kay Taylor, to screen and treat cervical cancer in developing countries. PINCC takes teams of volunteer doctors, nurses and counselors, with all needed equipment, including LEEP machine and cryotherapy gun, to areas where women cannot get care. In one visit, they diagnose and treat the early signs of developing cancer. They work with local public health workers, training them to do the same, then placing the equipment needed to sustain the work, returning every 6 months until local clinics are self-sufficient. There is no charge to clinics or patients for their services.
PINCC now plans to come to Kisoro District Hospital in October 2007 to implement cervical cancer screening and to train health care workers in the area to continue screening and treating after their departure.
Our hypothesis is that a major barrier to screening is the lack of knowledge of cervical cancer in the general population coupled with the low socioeconomic status of women and their lack of empowerment. We hope to generate some data on what is known about pelvic exams, cervical cancer, and fears that might deter women from being screened when PINCC comes. In addition, we plan to do some basic education about female anatomy and pelvic exams while one-on-one with the women.
Working in the Communities
We have now finished our time on the wards. The remaining five weeks will be devoted to various community projects. The project I will be working on, surprise-surprise, is cervical cancer. The cervical cancer statistics in Africa make Nicaragua appear well-controlled! Some of the Einstein students here last fall noted the lack of cervical cancer screening services in Uganda and began working with Einstein GYN department to see what could be done. Through myself, PINCC was contacted and now PINCC will be adding Kisoro, Uganda to their itinerary next fall while in Africa. So, in the meantime, Katrina and I will be taking a survey of cervical cancer awareness, knowledge of pelvic exams and myths / fears surrounding womens health issues. In addition, we hope to raise awareness of the need for women to be screened for cervical cancer, in hopes that when PINCC comes, they will have an easier time recruiting women.
This project has been quite challenging. In Rufumbira, the local language here in Kisoro, there is no word for cervix, and the word vagina is a shameful, dirty word, rarely uttered. Even doctors, MDs, refer to the vagina as down there and giggle as we discuss the female anatomy. We have compromised and now refer to the cervix as the mouth of the uterus. So trying to communicate about cervical cancer has had its extra difficulties
. women empowerment has not yet reached Uganda, so we have our work cut out for us.
(for more information on cervical cancer statistics in Uganda, see post entitled cervical cancer in Uganda.)
Beginning Monday we will trek out into the surrounding villages and go house to house interviewing women. In our survey, we plan to include lots of extra time for education, hoping that by educating a few women, the word will get out about the importance of cervical cancer screening.
My time on the wards had its highs and lows. I learned an unbelievable amount; in my physical exam skills, diagnostic capability and managing 15 patients at once. Internship should be a breeze after this. However we also suffered through terrible tragedies . A 22-year old girl who died from cerebral malaria because the parents were awaiting transport for three days. But we also had great success stories and I think, overall, we made a small difference.
Credits: Erin Cox, MD
More information at: http://www.pincc.org/campaigns/cervical-cancer-uganda-stats-and-more-glimpse-our-project
