Eliminating Health Disparities in Women’s Health in Puerto Rico Delia M. Camacho-Feliciano, Edna Pacheco-Acosta, Beatríz Morales, Josefina Romaguera
Journal of Health Care for the Poor and Underserved, Volume 24, Number 4, November 2013, Supplement, pp. 159-167 (Article) Published by Johns Hopkins University Press DOI: https://doi.org/10.1353/hpu.2014.0011
For additional information about this article https://muse.jhu.edu/article/525302
Access provided by Goldsmith's College, University Of London (18 Feb 2019 10:35 GMT)
REPORT FROM THE FIELD
Eliminating Health Disparities in Women’s Health in Puerto Rico Delia M. Camacho-Feliciano, PhD Edna Pacheco-Acosta, DrPHc Beatríz Morales, MS Josefina Romaguera, MD Abstract: Introduction. Hispanic women in Puerto Rico share health concerns that affect women generally, and suffer disproportionately from some health concerns relative to nonHispanic women. The University of Puerto Rico Women’s Health Center contributes to the promotion of women’s health by developing sustainable preventive services, designing programs according to women’s needs, and creating awareness of sex/gender differences in health and disease. Initiatives. A longitudinal breast cancer early detection clinic was developed and a community screening campaign was coordinated. Focus groups were conducted. A course on sex/gender considerations in research was developed and offered. Outcomes. Access to early detection of breast cancer was provided through an annual on-campus clinic and a community screening campaign. A breast cancer support group resulted from focus group recommendations. Health professionals from diverse disciplines participated in a course on sex/gender considerations in research. Conclusions. Synergistic efforts towards eliminating disparities in women’s health from an academic perspective provide a valuable tool for the promotion of health among Hispanic women living in Puerto Rico. Key words: Health disparities, women’s health, Hispanics, breast cancer support group, sex/ gender differences.
T
he University of Puerto Rico Medical Sciences Campus (UPR-MSC) created the Women’s Health Center in 1996 (U.S. Department of Health and Human Services National Center of Excellence in Women’s Health and Ambassador for Change 1998–2006) in an effort to coordinate ongoing campus efforts in the area of women’s health and to maximize improvements in the health and quality of life of women living in Puerto Rico. The interdisciplinary Center’s mission is to contribute to the well-being of women in Puerto Rico by incorporating issues relevant to women and their health in the academic endeavors of the UPR-MSC through research, education, information dissemination, and clinical and community services, as well as creating awareness of sex/gender differences in health throughout the academic community.
DELIA CAMACHOFELICIANO is a Professor in the School of Health Professions at the University of Puerto Rico (UPR), Medical Sciences Campus, and Director of the Women’s Health Center there. She can be reached at [email protected]; (787) 753-0090; EDNA PACHECOACOSTA is Associate Director and BEATRÍZ MORALES is an Evaluator at the Women’s Health Center at UPR. JOSEFINA ROMAGUERA is a Professor, School of Medicine, Department of Ob-Gyn, at UPR.
© Meharry Medical College
Journal of Health Care for the Poor and Underserved 24 (2013): 159–167.
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Women’s health in Puerto Rico
The Center strives to eliminate health disparities in women’s health, particularly within the female Hispanic/Latino population living in Puerto Rico, an island that is home to 3.7 million people, 52% of whom are women. According to the United States Census Bureau,1 Hispanic/Latino is an ethnicity rather than a race (as noted by Caballero2). Hispanics/Latinos constitute a heterogeneous group that shares a common bond of language, culture, inheritance, and contemporary life experiences. The Hispanic/Latino population in the U.S. is characterized by internal language variations, Spanish as a language of preference, education, health beliefs, customs, cultural values, and access to health care. There are major differences in terms of inclusion in society and access to resources. Hispanic women/Latinas living in Puerto Rico, like U.S. minority women population in general, suffer disparities in health relative to non-Hispanic White women. In Healthy People 2020,3 health disparity is defined as a particular type of health difference closely linked with social, economic and/or environmental disadvantage. The Minority Health and Health Disparities Research and Education Act of 2000 defines the term as differences in the overall rate of disease incidence, prevalence, morbidity, mortality or survival rates.4 The National Cancer Institute5 states that populations negatively affected by health disparities include racial and ethnic minorities, residents of rural areas, women, children, the elderly and people with disabilities. Williams6 stated that co-morbid chronic illnesses disproportionately affect minority women and the sequelae of multiple illnesses are worse for at least some minority populations than for Whites. According to the World Health Organization7 (WHO) life expectancy is higher for women than men in most countries, while a number of health and social factors combine to create a lower quality of life for women. Unequal access to information, care, and basic health practices increase health risks for women.7 Breast Cancer is the second leading cause of cancer death among women in the United States.8 Hispanic/Latina women have lower rates of breast cancer and breast cancer mortality than African American and White non-Hispanic women living in the United States. However, breast cancer is the most common cancer among Hispanic/Latina women.8 Additionally, Hispanic ethnicity is a risk factor for lack of adherence to screening mammography; other demographic, socioeconomic and health system variables account for some of the disparities related to Hispanic ethnicity.9 Breast cancer is the most commonly diagnosed cancer among females in Puerto Rico. According to the Puerto Rico Cancer Registry,11 it accounted for 30.3% of all female cancers between 2005–2009 and 18.8% of all female cancer deaths between 2004–2008. Approximately a total of 1,725 females were diagnosed with invasive breast cancer within the 2005–2009 five-year period. Between 2005 and 2009, the age- adjusted incidence rate was 73.4 per 100,000 females per year. Between 2004–2008, the age-adjusted death rate was 16.9 per 100,000 females per year.11 In an effort to contribute to eliminating health disparities in women’s health, the Puerto Rico Center of Excellence in Women’s Health focuses on strategies that enhance women’s health and well-being through community and health professional education, promotion of research, and facilitating access to preventive health services through collaboration and partnerships. The initiatives presented in this paper respond to the
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following objectives: (1) develop sustainable comprehensive breast cancer screening programs for a heterogeneous cohort of women; (2) assess the need for comprehensive health education for women; and (3) develop strategies to create awareness of sex/ gender health disparities among women in general and health professionals in training.
Women’s Health Center Initiatives Development of a longitudinal breast cancer early detection clinic for campus women employees. An annual Breast Cancer Early Detection Clinic was developed in 1996 in collaboration with the Department of Obstetrics and Gynecology of the School of Medicine and the Puerto Rico Oncology Hospital. The Women’s Health Center (WHC), through collaboration with the Ob-Gyn Department, provided referrals for mammograms and corresponding appointments at the Puerto Rico Oncology Hospital were arranged by the WHC. Radiologic and associated services were provided by the Oncology Hospital. The WHC retrieved and distributed mammogram results to participants. Upon receiving results, participants were required to declare in writing that they would take the results to their physician. Guidance was provided for next steps, depending on results. Educational materials were provided by the WHC and one-on-one orientation and support was offered as needed. Participant profile, total mammogram referrals, history of previous mammograms, and requests for assistance for identifying a physician were assessed (UPR-MSC IRB approval # 2210113) for the duration of the clinic: 1996–2012. Offering of a community breast cancer screening collaborative campaign. The Women’s Health Center and the Susan G. Komen Foundation-Puerto Rico united to offer a community breast cancer prevention campaign to facilitate access to screening mammograms free of charge for women without health insurance and without copayment for women with health insurance. The demonstration program, “Juntas somos más Fuertes; Camino a la Cura: Campaña para la Detección Temprana de Cáncer de Mama,”12 took place over three months (January-April 2011). Geographic distribution of the campaign across the island was determined taking into consideration factors including time schedule, insurance coverage of population, municipality and number of radiologic facilities available. Participants filled out a questionnaire to survey age, age of menarche, parity, employment, education, mean monthly income, family history of cancer, whether they had previous mammograms, and if not, reason for not having a mammogram. Additionally participants were asked about their knowledge of breast cancer: what breast cancer is, its risk factors and what is the most common cancer in Puerto Rican women; what a mammogram is, at what age they should begin screening by using a mammogram, and the meaning of possible results. The research was approved by the institutional review board (UPR-MSC IRB approval #2210111). Participants received education and access to quality services in early detection of breast cancer. Use of focus groups to assess the need for comprehensive health education in women’s health. The methodology of focus groups in health disparities research13 was identified as a means for obtaining feedback from women about their health education and support needs, particularly as it relates to breast cancer, the most commonly diag-
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nosed cancer among women in Puerto Rico. Consideration was given to the importance of interaction among group participants.14,15 A group of eight campus women employees who are breast cancer survivors, or who have a breast cancer survivor family member, were convened to a focus group in September 2009 to assess their need for health education in women’s health. A total of two sessions of 90 minutes duration were conducted. Sessions were conducted in an informal setting by a facilitator from the Women’s Health Center. The facilitator’s interventions were limited in order to promote group members’ participation. Participants introduced themselves, shared their experiences with cancer, either personal or that of a family member; and exchanged ideas about their needs for comprehensive health education in women’s health and what they would recommend as a helpful tool for dealing with early detection of cancer, diagnosis, treatment and survival. Interaction among participants was encouraged. Offering a course on sex/gender differences in health and disease to create awareness among health professionals of sex/gender health disparities. A clinical and translational research course in sex/gender considerations in clinical research was developed and offered as part of the Postdoctoral Master’s degree in Clinical and Translational Research offered jointly by the School of Health Professions and the School of Medicine for professionals from diverse disciplines. Scholars taking the course have a doctoral degree in any health-related discipline and are formally pursuing the postdoctoral master’s degree. This initiative aims to create transdisciplinary awareness of sex/gender differences that will contribute to the elimination of health disparities across the multiple disciplines of the doctoral scholars. Course objectives include: discuss differences in health based on sex and gender; describe a global perspective on women's and men’s health research and assess the status of research on sex/gender differences; analyze the importance of clinical evidence on sex/gender-specific issues related to manifestation of illness, treatment and outcomes; exemplify gender-related analysis; and explain NIH guidelines on including women and minorities in clinical trials. Strategies for teaching the course include on-site and on-line sessions using the Blackboard platform for conferences, analysis and discussion of research publications from a sex/gender perspective; and scholar presentations of original concept papers on a topic of the scholars’ discipline, evidenced by a minimum of five peer-reviewed publications analyzed from a sex/gender perspective.
Outcomes Longitudinal breast cancer early detection clinic for campus women employees (1993–2012). As seen in Table 1, the mean number of participants per clinic was 59, ranging from 28 to 141 per year. Participation per woman was an average of five times, ranging from a minimum of 5 to a maximum of 15 times during the sixteen-year annual clinic. An average of 23 women per municipality of residence participated each year. Most of the participants reside in the San Juan Metropolitan area, where the majority of the mammography sites are located. Nonetheless, they prefer to have the mammogram at their employment site. Mean age of participants was 47. Follow-up referrals for verification of mammogram results were provided by the
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Table 1. LONGITUDINAL BREAST CANCER EARLY DETECTION CLINIC FOR CAMPUS WOMEN EMPLOYEES N=411 Participation in Campaign Visits per participants Participants per Campaign Participants per municipality of residence
Mean 5 59 23
History of Previous Mammograms and Requested Assistance for Referrals Previous Mammograms Yes No No Response Requested Assistance for Referrals Yes No No Response
Min
Max
5 28 1
15 141 288
Participants
Percent
1,946 75 255
86% 3% 11%
1,594 508 174
70% 22% 8%
Figure 1. Longitudinal breast cancer early detection clinic for campus women employees: Total mammogram referrals (1996–2012).
Women’s Health Center. The total number of follow-up referrals ranged from 40 in 1997 to 263 in 2012 (Figure 1). Eighty six per cent (86%) of participants had a previous mammogram (Table 1). Seventy per cent (70%) of participants requested assistance in identifying a physician to verify their mammogram results and provide the corresponding follow-up. Twenty two per cent (22%) did not request assistance and 8% did not answer the corresponding question (Table 1). Mammogram referral orders for women requesting assistance in identifying a physician for follow-up were provided by the Women’s Health Center.
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Table 2. COMMUNITY BREAST CANCER PREVENTION COLLABORATIVE CAMPAIGN “CAMINO A LA CURA”: REPRODUCTIVE PROFILE AND DEMOGRAPHICS N=411 Reproductive Profile
Min
Max
Mean
Age of menarche Age of first pregnancy Number of pregnancy Number of live births
7 14 1 0
18 42 8 7
12 22 3 2
Demographics
Participants
Percent
7 31 115 109 93 33 23
2% 8% 28% 27% 23% 8% 6%
77 111 87 44 73 19
19% 27% 21% 11% 18% 5%
Educational Level Elementary School High School without diploma High School with diploma Associate or Technical degree Bachelor’s degree Master’s of Doctoral degree No Response Salary Less $500 Between $500 a $999 Between $1,000 a $1,499 Between $1,500 a $1,999 More de $2,000 No Response
Community breast cancer screening collaborative campaign. A Community Breast Cancer Prevention Collaborative Campaign (“Camino a la Cura”) was offered as a demonstration program between the Women’s Health Center and the Susan G. Komen Foundation-Puerto Rico from January to April 2011. A total of 569 women participated, of which 411 participated in a survey questionnaire. Participants received education and access to quality services in early detection of breast cancer. The geographical location of the project included seven Municipalities throughout the island: Cayey, Hatillo, Humacao, Loíza, Mayagüez, San Juan, and Ponce. Table 2 reports survey-participant reproductive, educational level, and income profiles. The mean age of participants was 49, with a mean age of menarche of 12. The majority had multiple births and had post secondary education. Of those that were employed, 67% had a salary less than or equal to $1,499 per month. More than 50% had one or more relatives with cancer. 80% reported they had a mammogram within the last two years, and those that did not, expressed that the reason for not having a mammogram was lack of health insurance and lack of time.
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Table 3. DISCIPLINES REPRESENTED BY UPRMSC SCHOLARS TAKING THE SEX/GENDER COURSE 20032012 Discipline Medicine Dental Medicine Allied Health Public Health Pharmacy PhD’s Total
Total No. Scholars
Women
Men
29 12 4 3 1 11 60
13 4 3 1 1 9 31
16 8 1 2 0 2 29
Assessment of the need for comprehensive health education in women’s health through focus groups. After participants shared their personal experiences with cancer, and interchanged ideas about their needs for comprehensive health education in women’s health and what they would recommend as a helpful tool for dealing with early detection of cancer, diagnosis, treatment and survival, the most significant outcome was the development of a breast cancer support group: “Grupo Victoria: Un abrazo de esperanza”. The focus group members became the members of the support group and currently meet on a regular basis. Group agenda has revolved around interdisciplinary educational activities in cancer, nutrition, self-esteem, well-being, and meditation, with the collaboration of faculty members from the different schools of the UPR Medical Sciences Campus. Group participants have had the benefit of individual interviews and psychological support offered by the Center’s collaborating psychologist. This outcome also resulted in the sponsorship of an art exhibition promoting art as an expression of traumatic experiences. Awareness among health professionals of sex/gender health disparities by offering a course on sex/gender differences in health and disease. The development of an elective course in sex/gender considerations in clinical research for the Postdoctoral Master’s Degree Program in Clinical and Translational Research of the University of Puerto Rico Medical Sciences Campus has provided awareness of the topic to doctoral professionals of a diversity of disciplines. Table 3 reports that a total of 60 scholars took the course from 2003 to 2012, representing the health-related disciplines of medicine (29), dental medicine (12), allied health professions (4), public health (3), pharmacy (1) and basic sciences (11 PhD’s). Of these, 52% (31) were women and 48% (29) were males. Furthermore, among the participating physicians, a vast number of specialties were represented: general practice, pediatrics, gastroenterology, internal medicine, urology, surgery, gerontology, psychiatry, emergency medicine, obstetrics and gynecology, orthopedic surgery, pediatric surgery, neonatology, immunology, family medicine, and neurosurgery.
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Discussion The Puerto Rico Center of Excellence in Women’s Health contributes to enhance the health and wellbeing of Hispanic women living in Puerto Rico by providing community and health professional education, promoting research, and providing access to preventive health services through collaboration and partnerships. The initiatives presented in this paper are synergistic efforts towards eliminating health disparities in women’s health from an academic perspective. The elimination of disparities in women’s health requires facilitation of access to preventive and early detection health services for women through partnerships to multiply resources that contribute to assuring sustainability; assessment of needs for health education and support from women’s perspectives; and education for the community and for health professionals in training in order to create awareness of sex/gender differences in health and disease. The project presented encompasses sustained efforts of the University of Puerto Rico Women’s Health Center towards this end. A yearly Breast Cancer Early Detection Campaign (1996–2012) provided the means for sustained, longitudinal participation and early detection of breast cancer among UPR-MSC women in work scenarios. The sharing of existing resources among the Center, the Department of Obstetrics and Gynecology of the School of Medicine and the Puerto Rico Oncology Hospital contributed to the achievement of common objectives for the improvement of health services for campus women employees, a majority among university personnel. The breast cancer prevention clinic offered to campus women employees provided the opportunity for these women to give priority to their health without affecting their employment and family responsibilities. Although the majority of participants live in the San Juan metropolitan area, where most of the facilities for obtaining a mammogram are located, women prefer to have the mammogram at their employment site. Our recommendation is that longitudinal early detection programs for cancer prevention should be developed within employment scenarios in order to facilitate access to early detection of diverse types of cancers. On the other hand, community outreach through collaboration with the Susan G. Komen Foundation-Puerto Rico multiplied the Women’s Health Center’s breast cancer prevention resources for special programs to serve women in the community who do not have medical insurance. In Puerto Rico there is a significant number of women who cannot afford a private medical insurance and do not qualify for the one provided by the government. Community health education and cancer screening programs should be developed collaboratively among different disciplines and entities to create a multiplying effect in benefit of women who do not have access to the necessary services. Screening programs paired with educational activities prepare women for major health decisions for themselves and for their families. Assessment of women’s health educational needs through a focus group provided a means for the development of a Breast Cancer Support Group where attention is given to mental, social and educational needs of breast cancer survivors within an educational setting. The development of support groups in the workplace should be considered as a strategy for disease prevention and health promotion among women. In addition to the above, preventive and health services for women cannot be optimal if health providers and clinical and translational researchers from various disciplines
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are not aware of the existence of sex/gender differences in health and disease. Sustained collaboration of the Women’s Health Center with the Campus School of Health Professions and School of Medicine for the development and offering of a postdoctoral course contributes to the inclusion of sex/gender considerations in health service delivery and in the development of clinical and translational research in diverse health science disciplines. Sex and gender differences in healthcare and clinical and translational research should be considered among all medical and health related disciplines.
Acknowledgments Grant Support: This project was partially supported by DHHS-OWH Grants # 213-98-0018; # AFCWH 060012; # HHSP233200400882P; # ADAIDO21502011 and # 02T02014403D; NIH-RCMI Grant #G12RR03051; NIH Grant # P20MD00537-02; Susan G. Komen Foundation. We recognize the excellent contribution of Ms. Ivette Marrero, Administrative Assistant of the Women's Health Center, in the coordination and effective implementation of the diverse Center projects and in particular, of the Breast Cancer Early Detection Clinic since 1996.
Notes 1.
2. 3. 4. 5. 6. 7. 8.
9. 10.
Humes KR, Jones NA, Ramirez RR. Overview of race and Hispanic origin: 2010. Washington, DC: U. S. Census Bureau, 2011. Available at http://www.census.gov/prod /cen2010/briefs/c2010br-02.pdf. Caballero AE. Understanding the Hispanic/Latino patient. Am J Med. 2011 Oct; 124(10 Suppl):S10–5. U.S. Department of Health and Human Services. Healthy People 2020 draft. Washington, DC: U. S. Government Printing Office, 2009. Public Law 106-525— Nov. 22, 2010. Available at: http://www.gpo.gov/fdsys/pkg/PLAW -106publ525/pdf/PLAW-106publ525.pdf. National Cancer Institute. Health disparities defined. Bethesda, MD: National Cancer Institute, 2010. Available at: http://crchd.cancer.gov/disparities/defined.html. Williams DR. Racial/ethnic variations in women's health: the social embeddedness of health. Am J Public Health. 2002 Apr;92(4):588–97. World Health Organization (WHO). 10 facts on women’s health. Geneva, Switzerland: WHO, 2011. Available at: http://www.who.int/features/factfiles/women/en/index.html. American Cancer Society. Breast cancer facts and figures 2011–2012. Atlanta, GA: American Cancer Society, 2013. Available at: http://www.cancer.org/research/cancer factsfigures/breastcancerfactsfigures/breast-cancer-facts-and-figures-2011-2012. Wells KJ, Roetzheim RG. Health disparities in receipt of screening mammography in Latinas: a critical review of recent literature. Cancer Control. 2007 Oct;14(4):369–79. Centers for Disease Control and Prevention (CDC). United States Cancer Statistics (USCS): 1999–2009 cancer incidence and mortality data. Atlanta, GA: Centers for Disease Control and Prevention, 2012. Available at: http://www.cdc.gov/uscs.
Journal of Health Care for the Poor and Underserved, Volume 24, Number 4, November 2013, Supplement, pp. 159-167 (Article) Published by Johns Hopkins University Press DOI: https://doi.org/10.1353/hpu.2014.0011
For additional information about this article https://muse.jhu.edu/article/525302
Access provided by Goldsmith's College, University Of London (18 Feb 2019 10:35 GMT)
REPORT FROM THE FIELD
Eliminating Health Disparities in Women’s Health in Puerto Rico Delia M. Camacho-Feliciano, PhD Edna Pacheco-Acosta, DrPHc Beatríz Morales, MS Josefina Romaguera, MD Abstract: Introduction. Hispanic women in Puerto Rico share health concerns that affect women generally, and suffer disproportionately from some health concerns relative to nonHispanic women. The University of Puerto Rico Women’s Health Center contributes to the promotion of women’s health by developing sustainable preventive services, designing programs according to women’s needs, and creating awareness of sex/gender differences in health and disease. Initiatives. A longitudinal breast cancer early detection clinic was developed and a community screening campaign was coordinated. Focus groups were conducted. A course on sex/gender considerations in research was developed and offered. Outcomes. Access to early detection of breast cancer was provided through an annual on-campus clinic and a community screening campaign. A breast cancer support group resulted from focus group recommendations. Health professionals from diverse disciplines participated in a course on sex/gender considerations in research. Conclusions. Synergistic efforts towards eliminating disparities in women’s health from an academic perspective provide a valuable tool for the promotion of health among Hispanic women living in Puerto Rico. Key words: Health disparities, women’s health, Hispanics, breast cancer support group, sex/ gender differences.
T
he University of Puerto Rico Medical Sciences Campus (UPR-MSC) created the Women’s Health Center in 1996 (U.S. Department of Health and Human Services National Center of Excellence in Women’s Health and Ambassador for Change 1998–2006) in an effort to coordinate ongoing campus efforts in the area of women’s health and to maximize improvements in the health and quality of life of women living in Puerto Rico. The interdisciplinary Center’s mission is to contribute to the well-being of women in Puerto Rico by incorporating issues relevant to women and their health in the academic endeavors of the UPR-MSC through research, education, information dissemination, and clinical and community services, as well as creating awareness of sex/gender differences in health throughout the academic community.
DELIA CAMACHOFELICIANO is a Professor in the School of Health Professions at the University of Puerto Rico (UPR), Medical Sciences Campus, and Director of the Women’s Health Center there. She can be reached at [email protected]; (787) 753-0090; EDNA PACHECOACOSTA is Associate Director and BEATRÍZ MORALES is an Evaluator at the Women’s Health Center at UPR. JOSEFINA ROMAGUERA is a Professor, School of Medicine, Department of Ob-Gyn, at UPR.
© Meharry Medical College
Journal of Health Care for the Poor and Underserved 24 (2013): 159–167.
160
Women’s health in Puerto Rico
The Center strives to eliminate health disparities in women’s health, particularly within the female Hispanic/Latino population living in Puerto Rico, an island that is home to 3.7 million people, 52% of whom are women. According to the United States Census Bureau,1 Hispanic/Latino is an ethnicity rather than a race (as noted by Caballero2). Hispanics/Latinos constitute a heterogeneous group that shares a common bond of language, culture, inheritance, and contemporary life experiences. The Hispanic/Latino population in the U.S. is characterized by internal language variations, Spanish as a language of preference, education, health beliefs, customs, cultural values, and access to health care. There are major differences in terms of inclusion in society and access to resources. Hispanic women/Latinas living in Puerto Rico, like U.S. minority women population in general, suffer disparities in health relative to non-Hispanic White women. In Healthy People 2020,3 health disparity is defined as a particular type of health difference closely linked with social, economic and/or environmental disadvantage. The Minority Health and Health Disparities Research and Education Act of 2000 defines the term as differences in the overall rate of disease incidence, prevalence, morbidity, mortality or survival rates.4 The National Cancer Institute5 states that populations negatively affected by health disparities include racial and ethnic minorities, residents of rural areas, women, children, the elderly and people with disabilities. Williams6 stated that co-morbid chronic illnesses disproportionately affect minority women and the sequelae of multiple illnesses are worse for at least some minority populations than for Whites. According to the World Health Organization7 (WHO) life expectancy is higher for women than men in most countries, while a number of health and social factors combine to create a lower quality of life for women. Unequal access to information, care, and basic health practices increase health risks for women.7 Breast Cancer is the second leading cause of cancer death among women in the United States.8 Hispanic/Latina women have lower rates of breast cancer and breast cancer mortality than African American and White non-Hispanic women living in the United States. However, breast cancer is the most common cancer among Hispanic/Latina women.8 Additionally, Hispanic ethnicity is a risk factor for lack of adherence to screening mammography; other demographic, socioeconomic and health system variables account for some of the disparities related to Hispanic ethnicity.9 Breast cancer is the most commonly diagnosed cancer among females in Puerto Rico. According to the Puerto Rico Cancer Registry,11 it accounted for 30.3% of all female cancers between 2005–2009 and 18.8% of all female cancer deaths between 2004–2008. Approximately a total of 1,725 females were diagnosed with invasive breast cancer within the 2005–2009 five-year period. Between 2005 and 2009, the age- adjusted incidence rate was 73.4 per 100,000 females per year. Between 2004–2008, the age-adjusted death rate was 16.9 per 100,000 females per year.11 In an effort to contribute to eliminating health disparities in women’s health, the Puerto Rico Center of Excellence in Women’s Health focuses on strategies that enhance women’s health and well-being through community and health professional education, promotion of research, and facilitating access to preventive health services through collaboration and partnerships. The initiatives presented in this paper respond to the
Camacho-Feliciano, Pacheco-Acosta, Morales, and Romaguera
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following objectives: (1) develop sustainable comprehensive breast cancer screening programs for a heterogeneous cohort of women; (2) assess the need for comprehensive health education for women; and (3) develop strategies to create awareness of sex/ gender health disparities among women in general and health professionals in training.
Women’s Health Center Initiatives Development of a longitudinal breast cancer early detection clinic for campus women employees. An annual Breast Cancer Early Detection Clinic was developed in 1996 in collaboration with the Department of Obstetrics and Gynecology of the School of Medicine and the Puerto Rico Oncology Hospital. The Women’s Health Center (WHC), through collaboration with the Ob-Gyn Department, provided referrals for mammograms and corresponding appointments at the Puerto Rico Oncology Hospital were arranged by the WHC. Radiologic and associated services were provided by the Oncology Hospital. The WHC retrieved and distributed mammogram results to participants. Upon receiving results, participants were required to declare in writing that they would take the results to their physician. Guidance was provided for next steps, depending on results. Educational materials were provided by the WHC and one-on-one orientation and support was offered as needed. Participant profile, total mammogram referrals, history of previous mammograms, and requests for assistance for identifying a physician were assessed (UPR-MSC IRB approval # 2210113) for the duration of the clinic: 1996–2012. Offering of a community breast cancer screening collaborative campaign. The Women’s Health Center and the Susan G. Komen Foundation-Puerto Rico united to offer a community breast cancer prevention campaign to facilitate access to screening mammograms free of charge for women without health insurance and without copayment for women with health insurance. The demonstration program, “Juntas somos más Fuertes; Camino a la Cura: Campaña para la Detección Temprana de Cáncer de Mama,”12 took place over three months (January-April 2011). Geographic distribution of the campaign across the island was determined taking into consideration factors including time schedule, insurance coverage of population, municipality and number of radiologic facilities available. Participants filled out a questionnaire to survey age, age of menarche, parity, employment, education, mean monthly income, family history of cancer, whether they had previous mammograms, and if not, reason for not having a mammogram. Additionally participants were asked about their knowledge of breast cancer: what breast cancer is, its risk factors and what is the most common cancer in Puerto Rican women; what a mammogram is, at what age they should begin screening by using a mammogram, and the meaning of possible results. The research was approved by the institutional review board (UPR-MSC IRB approval #2210111). Participants received education and access to quality services in early detection of breast cancer. Use of focus groups to assess the need for comprehensive health education in women’s health. The methodology of focus groups in health disparities research13 was identified as a means for obtaining feedback from women about their health education and support needs, particularly as it relates to breast cancer, the most commonly diag-
162
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nosed cancer among women in Puerto Rico. Consideration was given to the importance of interaction among group participants.14,15 A group of eight campus women employees who are breast cancer survivors, or who have a breast cancer survivor family member, were convened to a focus group in September 2009 to assess their need for health education in women’s health. A total of two sessions of 90 minutes duration were conducted. Sessions were conducted in an informal setting by a facilitator from the Women’s Health Center. The facilitator’s interventions were limited in order to promote group members’ participation. Participants introduced themselves, shared their experiences with cancer, either personal or that of a family member; and exchanged ideas about their needs for comprehensive health education in women’s health and what they would recommend as a helpful tool for dealing with early detection of cancer, diagnosis, treatment and survival. Interaction among participants was encouraged. Offering a course on sex/gender differences in health and disease to create awareness among health professionals of sex/gender health disparities. A clinical and translational research course in sex/gender considerations in clinical research was developed and offered as part of the Postdoctoral Master’s degree in Clinical and Translational Research offered jointly by the School of Health Professions and the School of Medicine for professionals from diverse disciplines. Scholars taking the course have a doctoral degree in any health-related discipline and are formally pursuing the postdoctoral master’s degree. This initiative aims to create transdisciplinary awareness of sex/gender differences that will contribute to the elimination of health disparities across the multiple disciplines of the doctoral scholars. Course objectives include: discuss differences in health based on sex and gender; describe a global perspective on women's and men’s health research and assess the status of research on sex/gender differences; analyze the importance of clinical evidence on sex/gender-specific issues related to manifestation of illness, treatment and outcomes; exemplify gender-related analysis; and explain NIH guidelines on including women and minorities in clinical trials. Strategies for teaching the course include on-site and on-line sessions using the Blackboard platform for conferences, analysis and discussion of research publications from a sex/gender perspective; and scholar presentations of original concept papers on a topic of the scholars’ discipline, evidenced by a minimum of five peer-reviewed publications analyzed from a sex/gender perspective.
Outcomes Longitudinal breast cancer early detection clinic for campus women employees (1993–2012). As seen in Table 1, the mean number of participants per clinic was 59, ranging from 28 to 141 per year. Participation per woman was an average of five times, ranging from a minimum of 5 to a maximum of 15 times during the sixteen-year annual clinic. An average of 23 women per municipality of residence participated each year. Most of the participants reside in the San Juan Metropolitan area, where the majority of the mammography sites are located. Nonetheless, they prefer to have the mammogram at their employment site. Mean age of participants was 47. Follow-up referrals for verification of mammogram results were provided by the
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Table 1. LONGITUDINAL BREAST CANCER EARLY DETECTION CLINIC FOR CAMPUS WOMEN EMPLOYEES N=411 Participation in Campaign Visits per participants Participants per Campaign Participants per municipality of residence
Mean 5 59 23
History of Previous Mammograms and Requested Assistance for Referrals Previous Mammograms Yes No No Response Requested Assistance for Referrals Yes No No Response
Min
Max
5 28 1
15 141 288
Participants
Percent
1,946 75 255
86% 3% 11%
1,594 508 174
70% 22% 8%
Figure 1. Longitudinal breast cancer early detection clinic for campus women employees: Total mammogram referrals (1996–2012).
Women’s Health Center. The total number of follow-up referrals ranged from 40 in 1997 to 263 in 2012 (Figure 1). Eighty six per cent (86%) of participants had a previous mammogram (Table 1). Seventy per cent (70%) of participants requested assistance in identifying a physician to verify their mammogram results and provide the corresponding follow-up. Twenty two per cent (22%) did not request assistance and 8% did not answer the corresponding question (Table 1). Mammogram referral orders for women requesting assistance in identifying a physician for follow-up were provided by the Women’s Health Center.
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Table 2. COMMUNITY BREAST CANCER PREVENTION COLLABORATIVE CAMPAIGN “CAMINO A LA CURA”: REPRODUCTIVE PROFILE AND DEMOGRAPHICS N=411 Reproductive Profile
Min
Max
Mean
Age of menarche Age of first pregnancy Number of pregnancy Number of live births
7 14 1 0
18 42 8 7
12 22 3 2
Demographics
Participants
Percent
7 31 115 109 93 33 23
2% 8% 28% 27% 23% 8% 6%
77 111 87 44 73 19
19% 27% 21% 11% 18% 5%
Educational Level Elementary School High School without diploma High School with diploma Associate or Technical degree Bachelor’s degree Master’s of Doctoral degree No Response Salary Less $500 Between $500 a $999 Between $1,000 a $1,499 Between $1,500 a $1,999 More de $2,000 No Response
Community breast cancer screening collaborative campaign. A Community Breast Cancer Prevention Collaborative Campaign (“Camino a la Cura”) was offered as a demonstration program between the Women’s Health Center and the Susan G. Komen Foundation-Puerto Rico from January to April 2011. A total of 569 women participated, of which 411 participated in a survey questionnaire. Participants received education and access to quality services in early detection of breast cancer. The geographical location of the project included seven Municipalities throughout the island: Cayey, Hatillo, Humacao, Loíza, Mayagüez, San Juan, and Ponce. Table 2 reports survey-participant reproductive, educational level, and income profiles. The mean age of participants was 49, with a mean age of menarche of 12. The majority had multiple births and had post secondary education. Of those that were employed, 67% had a salary less than or equal to $1,499 per month. More than 50% had one or more relatives with cancer. 80% reported they had a mammogram within the last two years, and those that did not, expressed that the reason for not having a mammogram was lack of health insurance and lack of time.
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Table 3. DISCIPLINES REPRESENTED BY UPRMSC SCHOLARS TAKING THE SEX/GENDER COURSE 20032012 Discipline Medicine Dental Medicine Allied Health Public Health Pharmacy PhD’s Total
Total No. Scholars
Women
Men
29 12 4 3 1 11 60
13 4 3 1 1 9 31
16 8 1 2 0 2 29
Assessment of the need for comprehensive health education in women’s health through focus groups. After participants shared their personal experiences with cancer, and interchanged ideas about their needs for comprehensive health education in women’s health and what they would recommend as a helpful tool for dealing with early detection of cancer, diagnosis, treatment and survival, the most significant outcome was the development of a breast cancer support group: “Grupo Victoria: Un abrazo de esperanza”. The focus group members became the members of the support group and currently meet on a regular basis. Group agenda has revolved around interdisciplinary educational activities in cancer, nutrition, self-esteem, well-being, and meditation, with the collaboration of faculty members from the different schools of the UPR Medical Sciences Campus. Group participants have had the benefit of individual interviews and psychological support offered by the Center’s collaborating psychologist. This outcome also resulted in the sponsorship of an art exhibition promoting art as an expression of traumatic experiences. Awareness among health professionals of sex/gender health disparities by offering a course on sex/gender differences in health and disease. The development of an elective course in sex/gender considerations in clinical research for the Postdoctoral Master’s Degree Program in Clinical and Translational Research of the University of Puerto Rico Medical Sciences Campus has provided awareness of the topic to doctoral professionals of a diversity of disciplines. Table 3 reports that a total of 60 scholars took the course from 2003 to 2012, representing the health-related disciplines of medicine (29), dental medicine (12), allied health professions (4), public health (3), pharmacy (1) and basic sciences (11 PhD’s). Of these, 52% (31) were women and 48% (29) were males. Furthermore, among the participating physicians, a vast number of specialties were represented: general practice, pediatrics, gastroenterology, internal medicine, urology, surgery, gerontology, psychiatry, emergency medicine, obstetrics and gynecology, orthopedic surgery, pediatric surgery, neonatology, immunology, family medicine, and neurosurgery.
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Discussion The Puerto Rico Center of Excellence in Women’s Health contributes to enhance the health and wellbeing of Hispanic women living in Puerto Rico by providing community and health professional education, promoting research, and providing access to preventive health services through collaboration and partnerships. The initiatives presented in this paper are synergistic efforts towards eliminating health disparities in women’s health from an academic perspective. The elimination of disparities in women’s health requires facilitation of access to preventive and early detection health services for women through partnerships to multiply resources that contribute to assuring sustainability; assessment of needs for health education and support from women’s perspectives; and education for the community and for health professionals in training in order to create awareness of sex/gender differences in health and disease. The project presented encompasses sustained efforts of the University of Puerto Rico Women’s Health Center towards this end. A yearly Breast Cancer Early Detection Campaign (1996–2012) provided the means for sustained, longitudinal participation and early detection of breast cancer among UPR-MSC women in work scenarios. The sharing of existing resources among the Center, the Department of Obstetrics and Gynecology of the School of Medicine and the Puerto Rico Oncology Hospital contributed to the achievement of common objectives for the improvement of health services for campus women employees, a majority among university personnel. The breast cancer prevention clinic offered to campus women employees provided the opportunity for these women to give priority to their health without affecting their employment and family responsibilities. Although the majority of participants live in the San Juan metropolitan area, where most of the facilities for obtaining a mammogram are located, women prefer to have the mammogram at their employment site. Our recommendation is that longitudinal early detection programs for cancer prevention should be developed within employment scenarios in order to facilitate access to early detection of diverse types of cancers. On the other hand, community outreach through collaboration with the Susan G. Komen Foundation-Puerto Rico multiplied the Women’s Health Center’s breast cancer prevention resources for special programs to serve women in the community who do not have medical insurance. In Puerto Rico there is a significant number of women who cannot afford a private medical insurance and do not qualify for the one provided by the government. Community health education and cancer screening programs should be developed collaboratively among different disciplines and entities to create a multiplying effect in benefit of women who do not have access to the necessary services. Screening programs paired with educational activities prepare women for major health decisions for themselves and for their families. Assessment of women’s health educational needs through a focus group provided a means for the development of a Breast Cancer Support Group where attention is given to mental, social and educational needs of breast cancer survivors within an educational setting. The development of support groups in the workplace should be considered as a strategy for disease prevention and health promotion among women. In addition to the above, preventive and health services for women cannot be optimal if health providers and clinical and translational researchers from various disciplines
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are not aware of the existence of sex/gender differences in health and disease. Sustained collaboration of the Women’s Health Center with the Campus School of Health Professions and School of Medicine for the development and offering of a postdoctoral course contributes to the inclusion of sex/gender considerations in health service delivery and in the development of clinical and translational research in diverse health science disciplines. Sex and gender differences in healthcare and clinical and translational research should be considered among all medical and health related disciplines.
Acknowledgments Grant Support: This project was partially supported by DHHS-OWH Grants # 213-98-0018; # AFCWH 060012; # HHSP233200400882P; # ADAIDO21502011 and # 02T02014403D; NIH-RCMI Grant #G12RR03051; NIH Grant # P20MD00537-02; Susan G. Komen Foundation. We recognize the excellent contribution of Ms. Ivette Marrero, Administrative Assistant of the Women's Health Center, in the coordination and effective implementation of the diverse Center projects and in particular, of the Breast Cancer Early Detection Clinic since 1996.
Notes 1.
2. 3. 4. 5. 6. 7. 8.
9. 10.
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