- Email: [email protected]
Women’s Select Health Issues in Underserved Populations
Wo men’s S elect H ealth Issues in Underserved Populations Luz M. Fernandez,
MD,
Jonathan A. Becker,
MD*
KEYWORDS Breast cancer Cervical cancer Contraception Health care disparities Underserved women KEY POINTS Health care disparities exist among populations with a lack of health care resources or poorer socioeconomic status. Barriers to health care include transportation, distrust of the health care system, lack of access to health care, and intimate partner issues. There is a lack of availability of cancer screening in poorer nations. Creating a needs assessment and using community resources are methods used to combat health care disparities in underserved women. Continuity of care and use of allied health professionals improve maternal-fetal outcomes.
INTRODUCTION
Care of the medically underserved presents unique challenges to health care providers. Underserved women lack or have limited access to health care. Combatting health care disparities requires a partnership between the community, its providers, and health care advocates for developing a needs assessment so that resources are used in an effective, efficient, and economically viable manner. Women are especially vulnerable to health care disparities in both industrialized and developing nations. The basis of this is multifactorial with poor socioeconomic status, lack of appropriate cancer screening, lack of reasonable transportation, and unequal gender roles all playing a part. The focus of this article is to outline the health care disparities in underserved women and present solutions to help bridge the health care gap.
The authors have nothing to disclose. Department of Family and Geriatric Medicine, University of Louisville, Louisville, KY, USA * Corresponding author. 201 Abraham Flexner Way, Suite 690, Louisville, KY 40202. E-mail address: [email protected] Prim Care Clin Office Pract - (2016) -–http://dx.doi.org/10.1016/j.pop.2016.09.008 0095-4543/16/ª 2016 Elsevier Inc. All rights reserved.
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CANCER SCREENING IN UNDERSERVED WOMEN
Cancer-related health disparities are defined by the National Cancer Institute as “adverse differences in cancer incidence cancer prevalence, cancer mortality, cancer survivorship, and burden of cancer or related health conditions that exist among specific population groups in the United States.”1 The disparity may exist due to age, disability, education, ethnicity, gender, geographic location, income, or race/ ethnicity. Women who are uninsured or underinsured have higher incidence of cervical and breast cancers and a more advanced disease than the general population. In the United States, the most vulnerable groups include African Americans/blacks, Asian Americans, Hispanic/Latinos, Native Americans, Alaska Natives, and underserved whites. CERVICAL CANCER SCREENING Barriers to Access to Care: Transportation
Women in underserved populations are more vulnerable to cervical cancer than their counterparts due to barriers to access to care.1,2 Few primary care clinics are situated to serve patients of lower socioeconomic status. Many of these women may not have personal vehicles for transportation, relying instead on friends and/or family or city/ local buses for transportation to their clinics.1 They may arrive late to their office visits due to late buses. Some patients may rely on transportation provided by their insurance companies, which requires calling a specific company with whom the insurance company has a contract at least 3 days in advance of an appointment to arrange transportation.3 Arriving late to an appointment may result in a lost appointment or the necessity of rescheduling. Repeated missed appointments may result in a patient being dismissed and discharged from the practice.1–4 In countries of lower socioeconomic status, reliable and timely transportation may not be available. Many villages in Africa are far from industrialized areas, without dependable transportation. Women may have to travel far distances on foot through treacherous terrain to seek medical care for themselves and their children.5 Distrust of the Medical Providers and System
Another barrier to care includes distrust of the medical providers and the medical system in general.6 Underserved women may have had bad experiences with the health care system and with medical providers who may not be sensitive to their individual needs. They may have experienced refusal to be seen by a medical provider due to either lack of insurance.6,7 Some may believe that they receive treatment that was less than optimal based on their race, gender, religion, or other factors.1,2 African American patients may recall the history of experimentation on patients of color. Modern surgical gynecology, founded by J. Marion Sims, has a gruesome foundation in its use of female slaves as his experimental subjects.8 Still others may recall the Tuskegee Experiment9 (US Public Health Service 1932–1972). Hispanic/Latino women residing in the United States may not seek health care services so as to not be vulnerable to inquiry about immigration status and face possible deportation.6 Fear of Cancer
The data show that precancerous or cancerous lesions of the cervix (and those of the breast as well) are found at more advanced stages in underserved women than in their counterparts.2,3 The fear of diagnosis of higher-grade lesions perpetuates the
Women’s Select Health Issues
avoidance of preventive health care. Many women in this population delay preventive health maintenance and seek care only when they experience symptoms. Because most cervical cancer is asymptomatic until later stages, and the symptoms may be nonspecific, there may be a remarkable delay in care. Underserved women may not understand the importance of routine health maintenance, prevention, and promotion.2,3 Confusion over Newer Cervical Cancer Screening Guidelines
Newer guidelines for cervical cancer screening are confusing to patients and providers (Table 1).10 The most recent guidelines issued by the US Preventive Services Task Force (USPSTF) in 2012 move away from yearly Papanicolaou (Pap) smears for women who have never had an abnormal Pap smear in favor of screening with liquid-based cytology and testing for human papillomavirus (HPV), the virus implicated in most cases of cervical dysplasia and cervical cancer (especially strains HPV 16 and HPV 18). Cytology and HPV status (positive for high-risk strains vs negative) guide the screening interval. Women with an abnormal Pap smear should be screened at more frequent intervals. Some underserved women have routine Pap smears only during pregnancy or postpartum period and may not understand the need for cervical cancer screening at other intervals.10 Table 1 lists cervical cancer screening guidelines based on age group. These guidelines assume an average-risk woman and do not apply to those with a history of higher-grade precancerous cervical lesions or cervical cancer or who are immunocompromised. Test Discomfort
Some women delay having a Pap smear because the test is uncomfortable. The discomfort and potential embarrassment of the examination outweigh any perceived benefit of the test.6,7 Lack of Availability of Papanicolaou Tests
Many developing countries do not have access to Pap smears for routine cervical cancer screening.5 Some of these developing nations use an acetic acid solution applied to the cervix of patients to try to indirectly detect the presence of HPV; areas that turn
Table 1 Summary of US Preventive Services Task Force cervical cancer screening guidelines Age
Screening Guideline
Screening Interval
Strength of Recommendation
<21
Not indicated
Not indicated
D
21–29
Cytology
Every 3 y
A
30–65
Cytology alone
Every 3 y
A
30–65
Cytology 1 HPV DNA testing
Every 5 y if HPV negative
A
>65
Not indicated
Not indicated
D
Women post-hysterectomy with removal of cervix for benign reasons
Not indicated
Not indicated
D
Adapted from Moyer V. Screening for Cervical Cancer: US Preventive Services task force recommendation statement. Ann Intern Med 2012;156:882.
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acetowhite are treated as HPV lesions without cytology, HPV DNA testing, or colposcopy with biopsy of suspicious lesions.7,11,12 Many areas in developing countries do not have physicians to perform these tests. They rely on nurses, allied health care professionals, and/or lay individuals trained in cervical cancer screening and detection and perform the acetic acid crude testing both independently and, when available, under the guidance of a remote physician or other medical provider using telemedicine.5,11–13 Special Considerations
Certain cultural practices can make routine female health screenings more challenging. For example, female circumcision, which results in genital mutilation. may make pelvic examinations more difficult because there may be more difficulty inserting a speculum (or it may be impossible to insert a standard speculum) and the experience may be traumatic to the patient.14,15 The introduction of DNA testing for the detection of higher-risk strains of HPV may help increase cervical cancer screening programs in underserved areas by making DNA swabs more widely available and at a more reasonable cost. DNA swabs could be self-administered by the patients under direction of a trained health care advocate.16 Sexual Assault
Sexual violence against women occurs in all countries and spans all socioeconomic statuses. In many countries, sexual assault is used as a form of torture and warfare. Some women are also sold into sexual slavery.16–18 Women who are at very high risk for cervical dysplasia may not tolerate a pelvic examination. The use of a speculum may trigger flashbacks of sexual assault. Multiple visits with use of desensitization techniques may help patients tolerate the examination over time.18,19 SCREENING FOR BREAST CANCER
Breast cancer remains a leading cause of cancer-related death among women worldwide.20 The highest rates of breast cancer deaths are in areas of lower socioeconomic status with more limited resources.20–23 These countries may not have universal breast cancer screening programs. To combat this issue, the Breast Health Global Initiative has compiled evidence-based guidelines, which take into account the economic burden of breast cancer screening and treatment.20–22 Screening for breast cancer has similar barriers to access for care as cervical cancer screening. Developing countries may not have access to mammography; therefore, breast cancer is generally found at later stages than in countries with a robust breast cancer screening program.20–22 Poorer countries may use guidelines that lean more heavily on a provider’s clinical breast examination and defer mammogram or diagnostic ultrasound for those with abnormal clinical breast examinations. Diagnostic ultrasound may be more available in these countries and may be the test of choice when abnormalities are detected on clinical breast examination.20–22 DNA testing for mutations that may place women into higher-risk categories for developing breast cancer (such as BRCA mutations) may not be readily available.21,22 As a result, early breast cancer screening as well as procedures, such as prophylactic mastectomy, prophylactic oophorectomy, and colon cancer screening, may not be available to decrease their risk of developing breast cancer, ovarian cancer, or colon cancer.20–22 Some developing countries have not made breast cancer screening a public health priority. This is in part because these countries have a higher incidence of infectious
Women’s Select Health Issues
diseases, which take priority in terms of resource allocation. According to the World Health Organization, guidelines for breast cancer screening and treatment are not readily feasible in poor or developing countries.20,21 Table 2 describes methods of breast cancer screening based on resource allocation. Recent guidelines by the USPSTF rate teaching self-breast examinations as a category D (recommend against) recommendation and clinical breast examinations as a category I recommendation (insufficient to assess the additional benefits and harms of clinical breast examination beyond screening mammography in women 40 years or older). These guidelines are aimed at trying to detect breast cancer at earlier stages because later stages require more intensive treatments and resource allocation. Based on needs assessments, resources for breast cancer screening are allocated to areas in which overall rates are higher.20–22 CONTRACEPTIVE CARE IN UNDERSERVED WOMEN
Women of lower socioeconomic status may not have access to contraceptives for many reasons beyond the transportation issues and distrust of the medical system (discussed previously). Cost
Prior to the passing of the Affordable Care Act in the United States, long-term contraception was cost-prohibitive to many underserved women of lower socioeconomic status.24,25 Long-acting reversible contraceptive methods, such as intrauterine devices and implantable hormonal contraceptives, are expensive methods that were not affordable to those without contraceptive coverage on their insurance plans.26 In the United States, undocumented women immigrants do not have access to insurance, including state-sponsored plans, such as Medicaid.24,25 Clinics not requiring insurance coverage or payment may not offer long-acting reversible contraceptives or lack the necessary supply.24,25 Methods, such as oral contraceptive pills, hormonecontaining vaginal ring, hormone-containing patch, and hormone injections, may also not be readily accessible to these women.24,25 Differences in Contraceptive Preferences and Contraceptive Acceptance
Certain contraceptive methods are more popular in some areas than in others. For example, in Latin America and Europe, the intrauterine device is widely accepted and used.26–28 Select contraceptive methods that provide for a monthly period (such as oral contraceptive pills, hormone pills, and hormone vaginal rings) may be
Table 2 Methods for breast cancer screening based on resource allocation Method
Resource Poor
Resource Plentiful
Patient education
1
1
Self-breast examinations
1
1
Clinical breast examination (performed by a provider)
1/
1
Mammography
1/
1
Diagnostic ultrasound
1
1
Adapted from Anderson BO, Shyyan R, Eniu A, et al. Breast cancer in limited-resource countries: an overview of the Breast Health Global Initiative 2005 Guidelines. Breast J 2006;12:S9.
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preferable to some women who believe having regular menses provides reassurance that they are not pregnant.27 Women may also prefer contraceptive methods they can use without the knowledge of their sexual partners due to social, cultural, and/or religious reasons. In some regions, women may have fear that a contraceptive device would be placed by a health care provider without their explicit informed consent. Moreover, in developing countries, there may be a precedent of experimentation on members of their population.29–31 For example, the first clinical trials of oral contraceptive pills were performed in Puerto Rico without the explicit informed consent of women participating in the study. Likewise, several developing countries have been sites of forced sterilization. Certain groups in the United States, such as women with mental health disorders or cognitive and other impairments who were institutionalized in the past, were victims of forced sterilization.29–31 Perceived side effects of the various contraceptive methods are also a barrier to its use. For example, those who use the contraceptive hormone injections may experience a delay of up to 18 months after their last injection in regaining fertility and becoming pregnant.26,27 Table 3 describes potential side effects of contraceptives that may contribute to women’s refusal of certain contraceptive methods. INTIMATE PARTNER VIOLENCE
In the United States, intimate partner violence is prevalent in all socioeconomic groups.17 Women experiencing physical, verbal, and/or sexual violence may experience fear and shame, which keep them from reporting the abuse to their medical providers.17,18 Women in the United States who are of limited English proficiency may be unable to report abuses to their medical providers because interpretation of their office visits may be performed through their significant other and not a third party.17–19 In many situations, even if a third party is present to provide medical interpretation,
Table 3 Potential side effects of contraceptive methods Intrauterine device, hormonal
Irregular bleeding/spotting Amenorrhea Weight gain Mood changes
Intrauterine device, copper
Increased menstrual cramping Increased menstrual flow
Hormone implant
Irregular bleeding/spotting Amenorrhea Weight gain Arm pain Mood changes
Hormone injection
Irregular bleeding/spotting Amenorrhea Weight gain Increased risk of osteopenia Delayed fertility on discontinuation Mood changes
Oral contraceptive pills
Weight gain Bloating Mood changes
Women’s Select Health Issues
the significant other may still be present for the entire medical encounter, and the patient may not feel able to recount a history of abuse. In some countries, it is socially acceptable for the male partner to use physical methods of discipline on his female partner.17–19 SPECIAL CONSIDERATIONS FOR MATERNAL-FETAL HEALTH
Many developing countries experience a higher rate of death during childbirth than industrialized nations, with the highest incidences in areas of Africa and Asia32; 90% of all maternal deaths and 80% of stillbirths are in countries that lack trained health care workers. Contributing factors to these deaths include poverty, poor overall health status, poor health literacy, lack of autonomy for medical decision making, lack of an adequately trained birth attendant, lack of an adequate referral system, inadequate transportation, and poor communication between health centers and communities.32–34 The programs that seem most successful in decreasing morbidity and mortality associated with pregnancy, childbirth, and the postpartum period are those that are community based.32–34 Allied health care workers, such as midwives and volunteers, can educate women on proper care, nutrition, and vaccination (where available) during or after childbirth. Use of local, trained professionals helps increase adherence by eliminating patients’ need to travel away from home for health care services.34–36 It also helps lessen distrust in the medical providers and health care system to receive health information and care from one of their perceived peers. These workers are trained in a variety of skills that range from keeping the baby warm postdelivery and neonatal resuscitation to care of the umbilical cord stump and breastfeeding.34–36 Studies have shown that the use of local health care advocates (described previously) helps increase breastfeeding rates for the mother and increase immunization rates in both mother and the infant.32–34 Home visitation has also been shown to decrease antenatal hospital admissions and the rates of cesarean section births.35–38 In the United States, methods that have been studied to help in teenage pregnancy have included support via telephone calls, home visits, social support from friends and family, and continuity of care, such as same obstetric provider throughout the whole pregnancy, family doctor to handle prenatal care, postpartum care, and care of the infant; however, these methods have not been shown to have a statistically significant effect on infant mortality in that population.39 Methods, such as mass media campaigns, community education, and outreach services, still lack data showing effectiveness.39 In industrialized, higher-income countries, the leading causes of deaths in infants are congenital anomalies, conditions related to premature birth, and sudden infant death syndrome/sudden or unexpected death in infancy.37,38 Group antenatal visits are one intervention that may help decrease infant mortality. This is true of in both industrialized and developing countries.38 SUMMARY
Underserved women experience health care disparities in the United States and abroad, especially in the areas of cervical or breast cancer screening, and contraception. Additional factors relate to intimate partner violence and prenatal and postpartum care. Understanding these disparities and working with local resources within these communities are among the most promising interventions that will help health care providers and patients partner to reduce these gaps.
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REFERENCES
1. Freeman HP, Wingrove BK. Excess cervical cancer mortality: a marker for low access to healthcare in poor communities. Rockville (MD): National Cancer Institute; Center to Reduce Cancer Health Disparities; 2005. NIH Pub. No. 05–5282. 2. Wharam JF, Zhang F, Xu X, et al. National trends and disparities in cervical cancer screening among commercially insured women, 2001–2010. Cancer Epidemiol Biomarkers Prev 2014;23:2366–73. 3. Health care financing administration. National Association of Medicaid Directors’ Non-Emergency Transportation Technical Advisory Group. (1998, August). Designing and operating cost effective medicaid non-emergency transportation programs: a guidebook for state medicaid agencies. Available at: http://ntl.bts. gov/lib/12000/12200/12290/medicaid.pdf. Accesed July 17, 2015. 4. Hicks ML, Yap OW, Matthews R, et al. Disparities in cervical cancer screening, treatment and outcomes. Ethn Dis 2006;16:S3. 5. Haar EK, Vonder KK, Schust DJ. Adapting cervical dysplasia screening, treatment and prevention approaches to low resource settings. Int STD Res Rev 2013;1:38–48. 6. Johnson CE, Mues KE, Mayne SL, et al. Cervical cancer screening among immigrants and ethnic minorities:a systematic review using the health belief model. J Low Genit Tract Dis 2008;12:232–41. 7. Goldie SJ, Gaffikin L, Goldhaber-Fiebert J, et al. Cost-effectiveness of cervicalcancer screening in five developing countries. N Engl J Med 2005;353:2158–68. 8. Axelsen DE. Women as victims of medical experimentation: J. Marion Sims’ surgery on slave women, 1845-1850. Sage 1985;2:10–3. 9. Green BL, Maisiak R, Wang MQ, et al. Participation in health education, health promotion, and health research by African Americans: effects of the Tuskegee Syphilis Experiment. J Health Educ 1997;28:196–201. 10. Moyer V. Screening for cervical cancer: US preventive services task force recommendation statement. Ann Intern Med 2012;156:880–91. 11. Murillo R, Almonte M, Pereira A, et al. Cervical cancer screening programs in Latin America and the Caribbean. Vaccine 2008;26(Suppl 11):L37–48. 12. Ditzian LR, David-West G, Maza M, et al. Cervical cancer screening in low-and middle-income countries. Mt Sinai J Med 2011;78:319–26. 13. Roger E, Nwosu O. Diagnosing cervical dysplasia using visual inspection of the cervix with acetic acid in a woman in rural Haiti. Int J Environ Res Public Health 2014;11:12304–11. 14. De Silva S. Obstetric sequelae of female circumcision. Eur J Obstet Gynecol Reprod Biol 1989;32:233–40. 15. Toubia N. Female circumcision as a public health issue. N Engl J Med 1994;331: 712–6. 16. Dzuba IG, Dı´az EY, Allen B, et al. The acceptability of self-collected samples for HPV testing vs. the pap test as alternatives in cervical cancer screening. J Womens Health Gend Based Med 2002;11:265–75. 17. Gandhi S, Rovi S, Vega M, et al. Intimate partner violence and cancer screening among urban minority women. J Am Board Fam Pract 2010;23:343–53. 18. Elliott L, Nerney M, Jones T, et al. Barriers to screening for domestic violence. J Gen Intern Med 2002;17:112–6. 19. McFarlane J, Malecha A, Watson K, et al. Intimate partner sexual assault against women: Frequency, health consequences, and treatment outcomes. Obstet Gynecol 2005;105:99–108.
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20. Anderson BO, Shyyan R, Eniu A, et al. Breast cancer in limited-resource countries: an overview of the Breast Health Global Initiative 2005 Guidelines. Breast J 2006;12(Suppl 1):S3–15. 21. Anderson BO, Jakesz R. Breast cancer issues in developing countries: an overview of the Breast Health Global Initiative. World J Surg 2008;32:2578–85. 22. Coughlin SS, Ekwueme DU. Breast cancer as a global health concern. Cancer Epidemiol 2009;33:315–8. 23. Bray F, McCarron P, Parkin DM. The changing global patterns of female breast cancer incidence and mortality. Breast Cancer Res 2004;6:229–39. 24. Peipert JF, Madden T, Allsworth JE, et al. Preventing unintended pregnancies by providing no-cost contraception. Obstet Gynecol 2012;120:1291–7. 25. Burlone S, Edelman AB, Caughey AB, et al. Extending contraceptive coverage under the Affordable Care Act saves public funds. Contraception 2013;87:143–8. 26. Feyisetan B, Casterline JB. Fertility preferences and contraceptive change in developing countries. Int Fam Plan Perspect 2000;26:100–9. 27. Garcia SG, Snow R, Aitken I. Preferences for contraceptive attributes: voices of women in Ciudad Jua´rez, Me´xico. Int Fam Plan Perspect 1997;23:52–8. 28. Narzary PK, Sharma SM. Daughter preference and contraceptive-use in matrilineal tribal societies in Meghalaya, India. J Health Popul Nutr 2013;31:278–89. 29. Bruinius H. Better for all the world: the secret history of forced sterilization and America’s quest for racial purity. New York: Vintage Books; 2007. 30. Briggs L. Discourses of forced sterilization in Puerto Rico: the problem with the speaking subaltern. Differences 1998;10:30–3. 31. Hyatt S. A shared history of shame: Sweden’s four-decade policy of forced sterilization and the eugenics movement in the United States. Indiana Int Comp Law Rev 1998;8:475–503. 32. Hollowell J, Oakley L, Kurinczuk JJ, et al. The effectiveness of antenatal care programmes to reduce infant mortality and preterm birth in socially disadvantaged and vulnerable women in high-income countries: a systematic review. BMC Pregnancy Childbirth 2011;11:13. 33. Lassi ZS, Das JK, Salam RA, et al. Evidence from community level inputs to improve quality of care for maternal and newborn health: interventions and findings. Reprod Health 2014;11:S2. 34. Osrin D, Prost A. Perinatal interventions and survival in resource-poor settings: which work, which don’t, which have the jury out? Arch Dis Child 2010;95:1039–46. 35. Kurinczuk JJ, Hollowell J, Brocklehurst P, et al. Inequalities in infant mortality project briefing paper 1. Infant Mortality: overview and context. Oxford (United Kingdom): National Perinatal Epidemiology Unit; 2009. 36. Callaghan WM, MacDorman MF, Rasmussen SA, et al. The contribution of preterm birth to infant mortality rates in the United States. Pediatrics 2006;118: 1566–73. 37. Rosano A, Botto LD, Botting B, et al. Infant mortality and congenital anomalies from 1950 to 1994: an international perspective. J Epidemiol Community Health 2000;54:660–6. 38. Ickovics JR, Kershaw TS, Westdahl C, et al. Group prenatal care and preterm birth weight: results from a matched cohort study at public clinics. Obstet Gynecol 2003;102:1051–7. 39. Little M, Gorman A, Dzendoletas D, et al. Caring for the most vulnerable: a collaborative approach to supporting pregnant homeless youth. Nurs Womens Health 2007;11:458–66.
9
MD,
Jonathan A. Becker,
MD*
KEYWORDS Breast cancer Cervical cancer Contraception Health care disparities Underserved women KEY POINTS Health care disparities exist among populations with a lack of health care resources or poorer socioeconomic status. Barriers to health care include transportation, distrust of the health care system, lack of access to health care, and intimate partner issues. There is a lack of availability of cancer screening in poorer nations. Creating a needs assessment and using community resources are methods used to combat health care disparities in underserved women. Continuity of care and use of allied health professionals improve maternal-fetal outcomes.
INTRODUCTION
Care of the medically underserved presents unique challenges to health care providers. Underserved women lack or have limited access to health care. Combatting health care disparities requires a partnership between the community, its providers, and health care advocates for developing a needs assessment so that resources are used in an effective, efficient, and economically viable manner. Women are especially vulnerable to health care disparities in both industrialized and developing nations. The basis of this is multifactorial with poor socioeconomic status, lack of appropriate cancer screening, lack of reasonable transportation, and unequal gender roles all playing a part. The focus of this article is to outline the health care disparities in underserved women and present solutions to help bridge the health care gap.
The authors have nothing to disclose. Department of Family and Geriatric Medicine, University of Louisville, Louisville, KY, USA * Corresponding author. 201 Abraham Flexner Way, Suite 690, Louisville, KY 40202. E-mail address: [email protected] Prim Care Clin Office Pract - (2016) -–http://dx.doi.org/10.1016/j.pop.2016.09.008 0095-4543/16/ª 2016 Elsevier Inc. All rights reserved.
primarycare.theclinics.com
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Fernandez & Becker
CANCER SCREENING IN UNDERSERVED WOMEN
Cancer-related health disparities are defined by the National Cancer Institute as “adverse differences in cancer incidence cancer prevalence, cancer mortality, cancer survivorship, and burden of cancer or related health conditions that exist among specific population groups in the United States.”1 The disparity may exist due to age, disability, education, ethnicity, gender, geographic location, income, or race/ ethnicity. Women who are uninsured or underinsured have higher incidence of cervical and breast cancers and a more advanced disease than the general population. In the United States, the most vulnerable groups include African Americans/blacks, Asian Americans, Hispanic/Latinos, Native Americans, Alaska Natives, and underserved whites. CERVICAL CANCER SCREENING Barriers to Access to Care: Transportation
Women in underserved populations are more vulnerable to cervical cancer than their counterparts due to barriers to access to care.1,2 Few primary care clinics are situated to serve patients of lower socioeconomic status. Many of these women may not have personal vehicles for transportation, relying instead on friends and/or family or city/ local buses for transportation to their clinics.1 They may arrive late to their office visits due to late buses. Some patients may rely on transportation provided by their insurance companies, which requires calling a specific company with whom the insurance company has a contract at least 3 days in advance of an appointment to arrange transportation.3 Arriving late to an appointment may result in a lost appointment or the necessity of rescheduling. Repeated missed appointments may result in a patient being dismissed and discharged from the practice.1–4 In countries of lower socioeconomic status, reliable and timely transportation may not be available. Many villages in Africa are far from industrialized areas, without dependable transportation. Women may have to travel far distances on foot through treacherous terrain to seek medical care for themselves and their children.5 Distrust of the Medical Providers and System
Another barrier to care includes distrust of the medical providers and the medical system in general.6 Underserved women may have had bad experiences with the health care system and with medical providers who may not be sensitive to their individual needs. They may have experienced refusal to be seen by a medical provider due to either lack of insurance.6,7 Some may believe that they receive treatment that was less than optimal based on their race, gender, religion, or other factors.1,2 African American patients may recall the history of experimentation on patients of color. Modern surgical gynecology, founded by J. Marion Sims, has a gruesome foundation in its use of female slaves as his experimental subjects.8 Still others may recall the Tuskegee Experiment9 (US Public Health Service 1932–1972). Hispanic/Latino women residing in the United States may not seek health care services so as to not be vulnerable to inquiry about immigration status and face possible deportation.6 Fear of Cancer
The data show that precancerous or cancerous lesions of the cervix (and those of the breast as well) are found at more advanced stages in underserved women than in their counterparts.2,3 The fear of diagnosis of higher-grade lesions perpetuates the
Women’s Select Health Issues
avoidance of preventive health care. Many women in this population delay preventive health maintenance and seek care only when they experience symptoms. Because most cervical cancer is asymptomatic until later stages, and the symptoms may be nonspecific, there may be a remarkable delay in care. Underserved women may not understand the importance of routine health maintenance, prevention, and promotion.2,3 Confusion over Newer Cervical Cancer Screening Guidelines
Newer guidelines for cervical cancer screening are confusing to patients and providers (Table 1).10 The most recent guidelines issued by the US Preventive Services Task Force (USPSTF) in 2012 move away from yearly Papanicolaou (Pap) smears for women who have never had an abnormal Pap smear in favor of screening with liquid-based cytology and testing for human papillomavirus (HPV), the virus implicated in most cases of cervical dysplasia and cervical cancer (especially strains HPV 16 and HPV 18). Cytology and HPV status (positive for high-risk strains vs negative) guide the screening interval. Women with an abnormal Pap smear should be screened at more frequent intervals. Some underserved women have routine Pap smears only during pregnancy or postpartum period and may not understand the need for cervical cancer screening at other intervals.10 Table 1 lists cervical cancer screening guidelines based on age group. These guidelines assume an average-risk woman and do not apply to those with a history of higher-grade precancerous cervical lesions or cervical cancer or who are immunocompromised. Test Discomfort
Some women delay having a Pap smear because the test is uncomfortable. The discomfort and potential embarrassment of the examination outweigh any perceived benefit of the test.6,7 Lack of Availability of Papanicolaou Tests
Many developing countries do not have access to Pap smears for routine cervical cancer screening.5 Some of these developing nations use an acetic acid solution applied to the cervix of patients to try to indirectly detect the presence of HPV; areas that turn
Table 1 Summary of US Preventive Services Task Force cervical cancer screening guidelines Age
Screening Guideline
Screening Interval
Strength of Recommendation
<21
Not indicated
Not indicated
D
21–29
Cytology
Every 3 y
A
30–65
Cytology alone
Every 3 y
A
30–65
Cytology 1 HPV DNA testing
Every 5 y if HPV negative
A
>65
Not indicated
Not indicated
D
Women post-hysterectomy with removal of cervix for benign reasons
Not indicated
Not indicated
D
Adapted from Moyer V. Screening for Cervical Cancer: US Preventive Services task force recommendation statement. Ann Intern Med 2012;156:882.
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acetowhite are treated as HPV lesions without cytology, HPV DNA testing, or colposcopy with biopsy of suspicious lesions.7,11,12 Many areas in developing countries do not have physicians to perform these tests. They rely on nurses, allied health care professionals, and/or lay individuals trained in cervical cancer screening and detection and perform the acetic acid crude testing both independently and, when available, under the guidance of a remote physician or other medical provider using telemedicine.5,11–13 Special Considerations
Certain cultural practices can make routine female health screenings more challenging. For example, female circumcision, which results in genital mutilation. may make pelvic examinations more difficult because there may be more difficulty inserting a speculum (or it may be impossible to insert a standard speculum) and the experience may be traumatic to the patient.14,15 The introduction of DNA testing for the detection of higher-risk strains of HPV may help increase cervical cancer screening programs in underserved areas by making DNA swabs more widely available and at a more reasonable cost. DNA swabs could be self-administered by the patients under direction of a trained health care advocate.16 Sexual Assault
Sexual violence against women occurs in all countries and spans all socioeconomic statuses. In many countries, sexual assault is used as a form of torture and warfare. Some women are also sold into sexual slavery.16–18 Women who are at very high risk for cervical dysplasia may not tolerate a pelvic examination. The use of a speculum may trigger flashbacks of sexual assault. Multiple visits with use of desensitization techniques may help patients tolerate the examination over time.18,19 SCREENING FOR BREAST CANCER
Breast cancer remains a leading cause of cancer-related death among women worldwide.20 The highest rates of breast cancer deaths are in areas of lower socioeconomic status with more limited resources.20–23 These countries may not have universal breast cancer screening programs. To combat this issue, the Breast Health Global Initiative has compiled evidence-based guidelines, which take into account the economic burden of breast cancer screening and treatment.20–22 Screening for breast cancer has similar barriers to access for care as cervical cancer screening. Developing countries may not have access to mammography; therefore, breast cancer is generally found at later stages than in countries with a robust breast cancer screening program.20–22 Poorer countries may use guidelines that lean more heavily on a provider’s clinical breast examination and defer mammogram or diagnostic ultrasound for those with abnormal clinical breast examinations. Diagnostic ultrasound may be more available in these countries and may be the test of choice when abnormalities are detected on clinical breast examination.20–22 DNA testing for mutations that may place women into higher-risk categories for developing breast cancer (such as BRCA mutations) may not be readily available.21,22 As a result, early breast cancer screening as well as procedures, such as prophylactic mastectomy, prophylactic oophorectomy, and colon cancer screening, may not be available to decrease their risk of developing breast cancer, ovarian cancer, or colon cancer.20–22 Some developing countries have not made breast cancer screening a public health priority. This is in part because these countries have a higher incidence of infectious
Women’s Select Health Issues
diseases, which take priority in terms of resource allocation. According to the World Health Organization, guidelines for breast cancer screening and treatment are not readily feasible in poor or developing countries.20,21 Table 2 describes methods of breast cancer screening based on resource allocation. Recent guidelines by the USPSTF rate teaching self-breast examinations as a category D (recommend against) recommendation and clinical breast examinations as a category I recommendation (insufficient to assess the additional benefits and harms of clinical breast examination beyond screening mammography in women 40 years or older). These guidelines are aimed at trying to detect breast cancer at earlier stages because later stages require more intensive treatments and resource allocation. Based on needs assessments, resources for breast cancer screening are allocated to areas in which overall rates are higher.20–22 CONTRACEPTIVE CARE IN UNDERSERVED WOMEN
Women of lower socioeconomic status may not have access to contraceptives for many reasons beyond the transportation issues and distrust of the medical system (discussed previously). Cost
Prior to the passing of the Affordable Care Act in the United States, long-term contraception was cost-prohibitive to many underserved women of lower socioeconomic status.24,25 Long-acting reversible contraceptive methods, such as intrauterine devices and implantable hormonal contraceptives, are expensive methods that were not affordable to those without contraceptive coverage on their insurance plans.26 In the United States, undocumented women immigrants do not have access to insurance, including state-sponsored plans, such as Medicaid.24,25 Clinics not requiring insurance coverage or payment may not offer long-acting reversible contraceptives or lack the necessary supply.24,25 Methods, such as oral contraceptive pills, hormonecontaining vaginal ring, hormone-containing patch, and hormone injections, may also not be readily accessible to these women.24,25 Differences in Contraceptive Preferences and Contraceptive Acceptance
Certain contraceptive methods are more popular in some areas than in others. For example, in Latin America and Europe, the intrauterine device is widely accepted and used.26–28 Select contraceptive methods that provide for a monthly period (such as oral contraceptive pills, hormone pills, and hormone vaginal rings) may be
Table 2 Methods for breast cancer screening based on resource allocation Method
Resource Poor
Resource Plentiful
Patient education
1
1
Self-breast examinations
1
1
Clinical breast examination (performed by a provider)
1/
1
Mammography
1/
1
Diagnostic ultrasound
1
1
Adapted from Anderson BO, Shyyan R, Eniu A, et al. Breast cancer in limited-resource countries: an overview of the Breast Health Global Initiative 2005 Guidelines. Breast J 2006;12:S9.
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preferable to some women who believe having regular menses provides reassurance that they are not pregnant.27 Women may also prefer contraceptive methods they can use without the knowledge of their sexual partners due to social, cultural, and/or religious reasons. In some regions, women may have fear that a contraceptive device would be placed by a health care provider without their explicit informed consent. Moreover, in developing countries, there may be a precedent of experimentation on members of their population.29–31 For example, the first clinical trials of oral contraceptive pills were performed in Puerto Rico without the explicit informed consent of women participating in the study. Likewise, several developing countries have been sites of forced sterilization. Certain groups in the United States, such as women with mental health disorders or cognitive and other impairments who were institutionalized in the past, were victims of forced sterilization.29–31 Perceived side effects of the various contraceptive methods are also a barrier to its use. For example, those who use the contraceptive hormone injections may experience a delay of up to 18 months after their last injection in regaining fertility and becoming pregnant.26,27 Table 3 describes potential side effects of contraceptives that may contribute to women’s refusal of certain contraceptive methods. INTIMATE PARTNER VIOLENCE
In the United States, intimate partner violence is prevalent in all socioeconomic groups.17 Women experiencing physical, verbal, and/or sexual violence may experience fear and shame, which keep them from reporting the abuse to their medical providers.17,18 Women in the United States who are of limited English proficiency may be unable to report abuses to their medical providers because interpretation of their office visits may be performed through their significant other and not a third party.17–19 In many situations, even if a third party is present to provide medical interpretation,
Table 3 Potential side effects of contraceptive methods Intrauterine device, hormonal
Irregular bleeding/spotting Amenorrhea Weight gain Mood changes
Intrauterine device, copper
Increased menstrual cramping Increased menstrual flow
Hormone implant
Irregular bleeding/spotting Amenorrhea Weight gain Arm pain Mood changes
Hormone injection
Irregular bleeding/spotting Amenorrhea Weight gain Increased risk of osteopenia Delayed fertility on discontinuation Mood changes
Oral contraceptive pills
Weight gain Bloating Mood changes
Women’s Select Health Issues
the significant other may still be present for the entire medical encounter, and the patient may not feel able to recount a history of abuse. In some countries, it is socially acceptable for the male partner to use physical methods of discipline on his female partner.17–19 SPECIAL CONSIDERATIONS FOR MATERNAL-FETAL HEALTH
Many developing countries experience a higher rate of death during childbirth than industrialized nations, with the highest incidences in areas of Africa and Asia32; 90% of all maternal deaths and 80% of stillbirths are in countries that lack trained health care workers. Contributing factors to these deaths include poverty, poor overall health status, poor health literacy, lack of autonomy for medical decision making, lack of an adequately trained birth attendant, lack of an adequate referral system, inadequate transportation, and poor communication between health centers and communities.32–34 The programs that seem most successful in decreasing morbidity and mortality associated with pregnancy, childbirth, and the postpartum period are those that are community based.32–34 Allied health care workers, such as midwives and volunteers, can educate women on proper care, nutrition, and vaccination (where available) during or after childbirth. Use of local, trained professionals helps increase adherence by eliminating patients’ need to travel away from home for health care services.34–36 It also helps lessen distrust in the medical providers and health care system to receive health information and care from one of their perceived peers. These workers are trained in a variety of skills that range from keeping the baby warm postdelivery and neonatal resuscitation to care of the umbilical cord stump and breastfeeding.34–36 Studies have shown that the use of local health care advocates (described previously) helps increase breastfeeding rates for the mother and increase immunization rates in both mother and the infant.32–34 Home visitation has also been shown to decrease antenatal hospital admissions and the rates of cesarean section births.35–38 In the United States, methods that have been studied to help in teenage pregnancy have included support via telephone calls, home visits, social support from friends and family, and continuity of care, such as same obstetric provider throughout the whole pregnancy, family doctor to handle prenatal care, postpartum care, and care of the infant; however, these methods have not been shown to have a statistically significant effect on infant mortality in that population.39 Methods, such as mass media campaigns, community education, and outreach services, still lack data showing effectiveness.39 In industrialized, higher-income countries, the leading causes of deaths in infants are congenital anomalies, conditions related to premature birth, and sudden infant death syndrome/sudden or unexpected death in infancy.37,38 Group antenatal visits are one intervention that may help decrease infant mortality. This is true of in both industrialized and developing countries.38 SUMMARY
Underserved women experience health care disparities in the United States and abroad, especially in the areas of cervical or breast cancer screening, and contraception. Additional factors relate to intimate partner violence and prenatal and postpartum care. Understanding these disparities and working with local resources within these communities are among the most promising interventions that will help health care providers and patients partner to reduce these gaps.
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REFERENCES
1. Freeman HP, Wingrove BK. Excess cervical cancer mortality: a marker for low access to healthcare in poor communities. Rockville (MD): National Cancer Institute; Center to Reduce Cancer Health Disparities; 2005. NIH Pub. No. 05–5282. 2. Wharam JF, Zhang F, Xu X, et al. National trends and disparities in cervical cancer screening among commercially insured women, 2001–2010. Cancer Epidemiol Biomarkers Prev 2014;23:2366–73. 3. Health care financing administration. National Association of Medicaid Directors’ Non-Emergency Transportation Technical Advisory Group. (1998, August). Designing and operating cost effective medicaid non-emergency transportation programs: a guidebook for state medicaid agencies. Available at: http://ntl.bts. gov/lib/12000/12200/12290/medicaid.pdf. Accesed July 17, 2015. 4. Hicks ML, Yap OW, Matthews R, et al. Disparities in cervical cancer screening, treatment and outcomes. Ethn Dis 2006;16:S3. 5. Haar EK, Vonder KK, Schust DJ. Adapting cervical dysplasia screening, treatment and prevention approaches to low resource settings. Int STD Res Rev 2013;1:38–48. 6. Johnson CE, Mues KE, Mayne SL, et al. Cervical cancer screening among immigrants and ethnic minorities:a systematic review using the health belief model. J Low Genit Tract Dis 2008;12:232–41. 7. Goldie SJ, Gaffikin L, Goldhaber-Fiebert J, et al. Cost-effectiveness of cervicalcancer screening in five developing countries. N Engl J Med 2005;353:2158–68. 8. Axelsen DE. Women as victims of medical experimentation: J. Marion Sims’ surgery on slave women, 1845-1850. Sage 1985;2:10–3. 9. Green BL, Maisiak R, Wang MQ, et al. Participation in health education, health promotion, and health research by African Americans: effects of the Tuskegee Syphilis Experiment. J Health Educ 1997;28:196–201. 10. Moyer V. Screening for cervical cancer: US preventive services task force recommendation statement. Ann Intern Med 2012;156:880–91. 11. Murillo R, Almonte M, Pereira A, et al. Cervical cancer screening programs in Latin America and the Caribbean. Vaccine 2008;26(Suppl 11):L37–48. 12. Ditzian LR, David-West G, Maza M, et al. Cervical cancer screening in low-and middle-income countries. Mt Sinai J Med 2011;78:319–26. 13. Roger E, Nwosu O. Diagnosing cervical dysplasia using visual inspection of the cervix with acetic acid in a woman in rural Haiti. Int J Environ Res Public Health 2014;11:12304–11. 14. De Silva S. Obstetric sequelae of female circumcision. Eur J Obstet Gynecol Reprod Biol 1989;32:233–40. 15. Toubia N. Female circumcision as a public health issue. N Engl J Med 1994;331: 712–6. 16. Dzuba IG, Dı´az EY, Allen B, et al. The acceptability of self-collected samples for HPV testing vs. the pap test as alternatives in cervical cancer screening. J Womens Health Gend Based Med 2002;11:265–75. 17. Gandhi S, Rovi S, Vega M, et al. Intimate partner violence and cancer screening among urban minority women. J Am Board Fam Pract 2010;23:343–53. 18. Elliott L, Nerney M, Jones T, et al. Barriers to screening for domestic violence. J Gen Intern Med 2002;17:112–6. 19. McFarlane J, Malecha A, Watson K, et al. Intimate partner sexual assault against women: Frequency, health consequences, and treatment outcomes. Obstet Gynecol 2005;105:99–108.
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20. Anderson BO, Shyyan R, Eniu A, et al. Breast cancer in limited-resource countries: an overview of the Breast Health Global Initiative 2005 Guidelines. Breast J 2006;12(Suppl 1):S3–15. 21. Anderson BO, Jakesz R. Breast cancer issues in developing countries: an overview of the Breast Health Global Initiative. World J Surg 2008;32:2578–85. 22. Coughlin SS, Ekwueme DU. Breast cancer as a global health concern. Cancer Epidemiol 2009;33:315–8. 23. Bray F, McCarron P, Parkin DM. The changing global patterns of female breast cancer incidence and mortality. Breast Cancer Res 2004;6:229–39. 24. Peipert JF, Madden T, Allsworth JE, et al. Preventing unintended pregnancies by providing no-cost contraception. Obstet Gynecol 2012;120:1291–7. 25. Burlone S, Edelman AB, Caughey AB, et al. Extending contraceptive coverage under the Affordable Care Act saves public funds. Contraception 2013;87:143–8. 26. Feyisetan B, Casterline JB. Fertility preferences and contraceptive change in developing countries. Int Fam Plan Perspect 2000;26:100–9. 27. Garcia SG, Snow R, Aitken I. Preferences for contraceptive attributes: voices of women in Ciudad Jua´rez, Me´xico. Int Fam Plan Perspect 1997;23:52–8. 28. Narzary PK, Sharma SM. Daughter preference and contraceptive-use in matrilineal tribal societies in Meghalaya, India. J Health Popul Nutr 2013;31:278–89. 29. Bruinius H. Better for all the world: the secret history of forced sterilization and America’s quest for racial purity. New York: Vintage Books; 2007. 30. Briggs L. Discourses of forced sterilization in Puerto Rico: the problem with the speaking subaltern. Differences 1998;10:30–3. 31. Hyatt S. A shared history of shame: Sweden’s four-decade policy of forced sterilization and the eugenics movement in the United States. Indiana Int Comp Law Rev 1998;8:475–503. 32. Hollowell J, Oakley L, Kurinczuk JJ, et al. The effectiveness of antenatal care programmes to reduce infant mortality and preterm birth in socially disadvantaged and vulnerable women in high-income countries: a systematic review. BMC Pregnancy Childbirth 2011;11:13. 33. Lassi ZS, Das JK, Salam RA, et al. Evidence from community level inputs to improve quality of care for maternal and newborn health: interventions and findings. Reprod Health 2014;11:S2. 34. Osrin D, Prost A. Perinatal interventions and survival in resource-poor settings: which work, which don’t, which have the jury out? Arch Dis Child 2010;95:1039–46. 35. Kurinczuk JJ, Hollowell J, Brocklehurst P, et al. Inequalities in infant mortality project briefing paper 1. Infant Mortality: overview and context. Oxford (United Kingdom): National Perinatal Epidemiology Unit; 2009. 36. Callaghan WM, MacDorman MF, Rasmussen SA, et al. The contribution of preterm birth to infant mortality rates in the United States. Pediatrics 2006;118: 1566–73. 37. Rosano A, Botto LD, Botting B, et al. Infant mortality and congenital anomalies from 1950 to 1994: an international perspective. J Epidemiol Community Health 2000;54:660–6. 38. Ickovics JR, Kershaw TS, Westdahl C, et al. Group prenatal care and preterm birth weight: results from a matched cohort study at public clinics. Obstet Gynecol 2003;102:1051–7. 39. Little M, Gorman A, Dzendoletas D, et al. Caring for the most vulnerable: a collaborative approach to supporting pregnant homeless youth. Nurs Womens Health 2007;11:458–66.
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