Survey aims to improve cancer screening and care for LGBT population
Questionnaire distributed during LGBT Pride Month
Afraid that she would be misunderstood or treated poorly, Margie Wells put off seeing a gynecologist until she had no choice because of a growth that required treatment. She was 24 years old.
As it turned out, Wells had reason to worry. Despite her insistence that she could not be pregnant because she is a lesbian, the doctor insisted on a pregnancy test and use of a monitoring device to detect a fetal heartbeat. Wells was later diagnosed with an ovarian endometrioma requiring an open surgery and a subsequent biopsy to rule out cancer. Her experience spurred her to actively seek a physician sensitive to her sexual orientation.
Wells, of Sacramento, said her experience is not unusual among many lesbians, gay men, bisexual and transgender individuals, who may be reluctant to get regular prevention screenings or to seek medical help when they suspect a problem. The results are disparities in health care and disease outcomes, including cancer.
Lesbians have a higher incidence of breast cancer and gay men have a higher incidence of anal, rectal and prostate cancer than their heterosexual counterparts. Complicating higher rates of disease is the fact that many LGBT people also deal with other health conditions such as HIV/AIDS, IV drug addiction and mental health issues, with few relevant services or resources. Wells notes that lesbians, in particular, also are at higher risk for obesity, tobacco and alcohol use -- all of which can increase cancer risk.
The UC Davis Comprehensive Cancer Center and Sacramento State Partnership, working with the Lesbian, Gay, Bisexual and Transgender (LGBT) Cancer Health Task Force, wants to address those disparities, starting with a broad survey of Sacramento-area LGBT individuals about their experiences with health-care generally and with cancer, cancer screening and treatment more specifically.
The anonymous survey, now available online, asks individuals general demographic questions and questions about their health status, insurance coverage, frequency of medical care as well as more detailed questions about gender identity, sexual orientation and whether that information is shared with health-care providers. The survey goes on to tackle specific questions about whether individuals get screenings for cervical, breast, colon, testicular, prostate and skin cancers.
Marlene von Friederichs-Fitzwater, founder and chair of the task force and director of the UC Davis Comprehensive Caner Center's Outreach Research and Education Program, said that beyond disparities in rates of disease, the LGBT community must overcome other unique hurdles.
"They have to decide whether to come out to their oncologist and treatment team, and find out if their LGBT family members will be welcome in the doctor's office or hospital," she said. "They also have to cope with the effects of treatment on their sexuality and sexual functioning."
Von Friederichs-Fitzwater explained that results of the survey will be used to identify community needs that can be addressed with additional research and outreach to health-care providers and members of the LGBT community.
Wells, who was later diagnosed and treated for breast cancer in 2005, said the information collected from the survey could pave the way toward development of more tolerant, sensitive and informed health-care provider community, and a healthier community of LGBT individuals no longer afraid to get the preventive screenings or health-care they need.
To participate in the survey, visit http://www.surveymonkey.com/s/NV77JBS
UC Davis Comprehensive Cancer Center is the only National Cancer Institute-designated center serving the Central Valley and inland Northern California, a region of more than 6 million people. Its specialists provide compassionate, comprehensive care for more than 9,000 adults and children every year, and access to more than 150 clinical trials at any given time. Its innovative research program engages more than 280 scientists at UC Davis, Lawrence Livermore National Laboratory and Jackson Laboratory (JAX West), whose scientific partnerships advance discovery of new tools to diagnose and treat cancer. Through the Cancer Care Network, UC Davis collaborates with a number of hospitals and clinical centers throughout the Central Valley and Northern California regions to offer the latest cancer care. Its community-based outreach and education programs address disparities in cancer outcomes across diverse populations. For more information, visit cancer.ucdavis.edu.