&HUYLFDO&DQFHUDQG+39 .QRZOHGJH$WWLWXGHV%HOLHIV DQG%HKDYLRUVDPRQJ:RPHQ/LYLQJLQ*XDWHPDOD Amy Petrocy, Mira L. Katz
Journal of Health Care for the Poor and Underserved, Volume 25, Number 2, May 2014, pp. 624-636 (Article) 3XEOLVKHGE\7KH-RKQV+RSNLQV8QLYHUVLW\3UHVV DOI: 10.1353/hpu.2014.0084
For additional information about this article http://muse.jhu.edu/journals/hpu/summary/v025/25.2.petrocy.html
Access provided by University of California, San Diego (10 Feb 2016 00:47 GMT)
PART 1: ORIGINAL PAPER
Cervical Cancer and HPV: Knowledge, Attitudes, Beliefs, and Behaviors among Women Living in Guatemala Amy Petrocy, MPH Mira L. Katz, PhD, MPH Abstract: This study was conducted to explore knowledge, attitudes, and beliefs about cervical cancer, cervical cancer screening, human papillomavirus (HPV), and acceptance of the HPV vaccine. A purposive sample of 40 women was interviewed during August 2012. Fisher’s exact test was used to evaluate differences among rural and urban women, and open-ended questions were coded independently by two individuals (Cohen’s kappa coefficient of 0.816). Among the 22 rural and 18 urban women, there was limited knowledge about cervical cancer, screening, HPV, and the HPV vaccine. Cervical cancer was described in language related to gender, science, severity, or associated with having children, a uterus, or menstruation. All rural and most urban participants were interested in the HPV vaccine for themselves and their daughters. Limited awareness and knowledge about cervical cancer and HPV was common among Guatemalan women, highlighting the need for additional information prior to developing cancer prevention educational materials and programs. Key words: Cervical cancer, health disparities, human papillomavirus, HPV vaccine.
C
ervical cancer is the second most common cancer among women worldwide, with over 529,000 new cases and approximately 275,000 deaths in 2008 (the most recent year for which statistics are available from the International Agency for Research on Cancer (World Health Organization).1,2 The cervical cancer incidence rate (agestandardized) is 17.8 per 100,000 females in developing countries, compared with 9.0 per 100,000 females living in developed countries, and the cervical cancer mortality rate (age-standardized) is 9.8 deaths in developing countries compared with 3.2 deaths per 100,000 females in developed countries (2008).1 Of the worldwide annual cervical cancer deaths, approximately 80% are among women living in developing countries.3 In Guatemala in 2008, the cervical cancer incidence and mortality rates were 30.5 and 15.2 per 100,000 females, respectively.4 This is in contrast to cervical cancer incidence and mortality rates of 5.7 and 1.7 per 100,000 females, respectively, in the U.S.1 The The authors are affiliated with the Division of Health Behavior and Health Promotion, College of Public Health, The Ohio State University (OSU), in Columbus, Ohio [AP and MLK] and the Division of Cancer Prevention and Control, College of Medicine, OSU [MLK] and the Comprehensive Cancer Center, OSU [MLK]. Please address correspondence to Mira L. Katz, PhD, MPH; College of Public Health, The Ohio State University, Suite 525; 1590 North High Street, Columbus, Ohio 43201; (614) 293‑6603; mira [email protected]. © Meharry Medical College
Journal of Health Care for the Poor and Underserved 25 (2014): 624–636.
Petrocy and Katz
625
significant difference in cervical cancer rates is due to widespread adoption of cancer screening among females living in the U.S. Although the Pap test has significantly decreased cervical cancer rates in developed countries, most developing countries lack the infrastructure required to maintain successful cancer screening programs because of the lack of high quality laboratories, well-trained providers, access to supplies, a reliable means of transporting specimens, and a patient tracking system.5,6 Additionally, cervical cancer screening may result in multiple follow-up appointments, requiring women to travel and spend time away from their family, which is often difficult in developing countries. Visual inspection of the cervix after applying acetic acid (VIA) and immediate cryotherapy is an attractive option for developing countries because it is inexpensive, can be performed by mid-level providers, eliminates the need for extensive follow-up appointments, requires few resources, and can be performed on mobile units reaching remote populations.5,6 The “screen and treat” approach has been suggested as an alternative screening approach in developing countries including Guatemala.7–9 However, only 36–41% of Guatemalan women (urban: 48% and rural: 28%) ages 15–49 have ever been screened for cervical cancer (2002).4,10 This is significantly different from the U.S., where 83% of women with no hysterectomy reported having a Pap test within the past three years in the 2010 National Health Interview Survey.11 Another factor in the increased cervical cancer rates is that human papillomavirus (HPV), a common sexually transmitted infection, causes most cases of cervical cancer.12,13 In Guatemala, HPV prevalence is approximately 38% among women with normal cytology from the general population.14 Although the HPV vaccines were licensed for use in Guatemala in 2009, the vaccines are not available in Guatemala, and there is not a planned HPV vaccine introduction in national immunization program.4 Reasons that the distribution of the HPV vaccine in Guatemala is not possible at this time include prohibitive costs associated with the HPV vaccine, the lack of a tracking infrastructure to monitor individuals for the three-dose series, limited access to health care, transportation issues, and other competing health and social issues.15–17 The country of Guatemala has a history of societal violence with significant income disparities among the population. The Guatemalan population is largely rural and poor, lacks access to health care services, has low education levels which result in approximately 25% of the adult population being illiterate, and has poor health outcomes. In light of these issues, we thought it would be important to obtain a better understanding of the knowledge, attitudes, beliefs, and behaviors about cervical cancer, cervical cancer screening, HPV, and the HPV vaccine among Guatemalan women. Beginning to identify commonalities and/or differences among women living in rural and urban Guatemalan regions is important for planning future research prior to the development of educational materials and programs to address the cervical cancer burden among Guatemalan women.
Methods Study design. This was a qualitative study using a semi-structured interview guide to conduct interviews among 40 women living in rural and urban regions of Guatemala.
626
Cervical cancer beliefs among Guatemalan women
The study was conducted during August 2012. The Institutional Review Board of The Ohio State University approved the study protocol. Setting. Guatemala, a developing country in Central America, is divided into 22 departments, and has estimated population of 14.8 million. Approximately half of the population lives below the national poverty level and the per capita Gross National Income is $2,870.18 The primary ethnic groups in Guatemala are Ladino (SpanishIndian) and Indigenous Maya, with Indigenous Mayans accounting for nearly 40% of the population. Spanish is the primary language, however there are 24 indigenous languages also spoken throughout the country. Participants and procedures. A purposive sample of women were approached and asked to participate in a study about women’s health. Women were recruited in waiting rooms of two medical missions (medical/surgical clinics operated by a 501(c)(3) organization) where women were seeking health care for their children, at local churches, and local vendors (e.g., laundry facilities). Eligibility criteria included being: a) female, b) 21–65 years old, c) able to speak and understand English or Spanish, d) living in Guatemala, and e) able to provide verbal consent. After potential participants were identified and eligibility determined, a brief consent-script was read to the participants that included all requirements and potential risks of participating in the study. Participants were provided with the opportunity to ask any questions and have their questions answered prior to giving spoken consent. Interviews were conducted in a private location by a member of the research team. Interviews were conducted using a semi-structured guide and were completed, on average, in 15 to 20 minutes. The interviewer, fluent in Spanish and familiar with Guatamala, conducted interviews in Spanish. After completing the interview, participants were given the opportunity to ask any questions they had about cervical cancer and about local cervical cancer screening services. No incentive or compensation was provided to the study participants. Interview guide. An interview guide was developed by the investigators and included open and close-ended questions. No personal identifying information was recorded. The guide was based on the Health Belief Model (HBM),19 and included the following constructs related to cervical cancer, cervical cancer screening, HPV, and the HPV vaccine: “perceived susceptibility,” “perceived severity,” “perceived barriers,” “perceived benefits,” and “self-efficacy” (Box 1). Although the interview guide was not validated, the HBM has been used as a framework for previous cervical cancer screening studies among women in developing countries.20,21 Additionally, demographic characteristics (age, ethnicity, marital status, number of people living in the house, education level, religion, and income), self-rated health, and information about additional health behaviors (e.g., smoking) were collected. Analysis. Descriptive statistics provide overall sample characteristics. Fisher’s exact test was used to compare differences among rural and urban participants. Responses to demographic questions were recorded by the interviewer and transferred to an Excel spreadsheet. Responses to open-ended questions were reviewed and codes developed. Using the codes, the research team independently coded the responses, reviewed differences, and reached a consensus. There was good agreement between reviewers with a Cohen’s kappa coefficient of 0.816.22
Petrocy and Katz
627
Box 1. HEALTH BELIEF MODEL: CONSTRUCTS AND EXAMPLES OF SURVEY QUESTIONS Construct
Examples of Questions
Perceived Susceptibility Do you know how women get cervical cancer? Have you ever heard of Human Papillomavirus or HPV? If yes, can you tell what it is and how a woman gets HPV? Perceived Severity
Do you think cervical cancer is a serious disease?
Perceived Barriers
Have you ever been checked for cervical cancer? If no, why not?
Perceived Benefits
Do you know if there is a way to prevent a woman from getting cervical cancer? If yes, please explain.
Self-Efficacy
Would it be easy for you to go to the doctor if you wanted to check for cervical cancer?
Results Forty-one women were approached to participate in the study. One rural woman refused participation because she was upset about the health of her grandson who was undergoing an operation. The response rate was 97.6% (40/41), including 22 rural and 18 urban women. Participant characteristics and health behaviors. Participants’ demographic characteristics are listed in Table 1. The mean age of the women was 35.3 years. Participants were categorized as rural if they self-identified as living in or near an aldea (village) or as urban if they self-identified as living in or near a ciudad (city). Participants were residents of the following Guatemalan departments: Alta Verapaz, Baja Verapaz, Chimaltenango, Guatemala, El Quiche, and Sacatepequez. Participants from rural compared with urban regions were more frequently Indigenous Mayan (81.8% vs. 33.3%, p
Journal of Health Care for the Poor and Underserved, Volume 25, Number 2, May 2014, pp. 624-636 (Article) 3XEOLVKHGE\7KH-RKQV+RSNLQV8QLYHUVLW\3UHVV DOI: 10.1353/hpu.2014.0084
For additional information about this article http://muse.jhu.edu/journals/hpu/summary/v025/25.2.petrocy.html
Access provided by University of California, San Diego (10 Feb 2016 00:47 GMT)
PART 1: ORIGINAL PAPER
Cervical Cancer and HPV: Knowledge, Attitudes, Beliefs, and Behaviors among Women Living in Guatemala Amy Petrocy, MPH Mira L. Katz, PhD, MPH Abstract: This study was conducted to explore knowledge, attitudes, and beliefs about cervical cancer, cervical cancer screening, human papillomavirus (HPV), and acceptance of the HPV vaccine. A purposive sample of 40 women was interviewed during August 2012. Fisher’s exact test was used to evaluate differences among rural and urban women, and open-ended questions were coded independently by two individuals (Cohen’s kappa coefficient of 0.816). Among the 22 rural and 18 urban women, there was limited knowledge about cervical cancer, screening, HPV, and the HPV vaccine. Cervical cancer was described in language related to gender, science, severity, or associated with having children, a uterus, or menstruation. All rural and most urban participants were interested in the HPV vaccine for themselves and their daughters. Limited awareness and knowledge about cervical cancer and HPV was common among Guatemalan women, highlighting the need for additional information prior to developing cancer prevention educational materials and programs. Key words: Cervical cancer, health disparities, human papillomavirus, HPV vaccine.
C
ervical cancer is the second most common cancer among women worldwide, with over 529,000 new cases and approximately 275,000 deaths in 2008 (the most recent year for which statistics are available from the International Agency for Research on Cancer (World Health Organization).1,2 The cervical cancer incidence rate (agestandardized) is 17.8 per 100,000 females in developing countries, compared with 9.0 per 100,000 females living in developed countries, and the cervical cancer mortality rate (age-standardized) is 9.8 deaths in developing countries compared with 3.2 deaths per 100,000 females in developed countries (2008).1 Of the worldwide annual cervical cancer deaths, approximately 80% are among women living in developing countries.3 In Guatemala in 2008, the cervical cancer incidence and mortality rates were 30.5 and 15.2 per 100,000 females, respectively.4 This is in contrast to cervical cancer incidence and mortality rates of 5.7 and 1.7 per 100,000 females, respectively, in the U.S.1 The The authors are affiliated with the Division of Health Behavior and Health Promotion, College of Public Health, The Ohio State University (OSU), in Columbus, Ohio [AP and MLK] and the Division of Cancer Prevention and Control, College of Medicine, OSU [MLK] and the Comprehensive Cancer Center, OSU [MLK]. Please address correspondence to Mira L. Katz, PhD, MPH; College of Public Health, The Ohio State University, Suite 525; 1590 North High Street, Columbus, Ohio 43201; (614) 293‑6603; mira [email protected]. © Meharry Medical College
Journal of Health Care for the Poor and Underserved 25 (2014): 624–636.
Petrocy and Katz
625
significant difference in cervical cancer rates is due to widespread adoption of cancer screening among females living in the U.S. Although the Pap test has significantly decreased cervical cancer rates in developed countries, most developing countries lack the infrastructure required to maintain successful cancer screening programs because of the lack of high quality laboratories, well-trained providers, access to supplies, a reliable means of transporting specimens, and a patient tracking system.5,6 Additionally, cervical cancer screening may result in multiple follow-up appointments, requiring women to travel and spend time away from their family, which is often difficult in developing countries. Visual inspection of the cervix after applying acetic acid (VIA) and immediate cryotherapy is an attractive option for developing countries because it is inexpensive, can be performed by mid-level providers, eliminates the need for extensive follow-up appointments, requires few resources, and can be performed on mobile units reaching remote populations.5,6 The “screen and treat” approach has been suggested as an alternative screening approach in developing countries including Guatemala.7–9 However, only 36–41% of Guatemalan women (urban: 48% and rural: 28%) ages 15–49 have ever been screened for cervical cancer (2002).4,10 This is significantly different from the U.S., where 83% of women with no hysterectomy reported having a Pap test within the past three years in the 2010 National Health Interview Survey.11 Another factor in the increased cervical cancer rates is that human papillomavirus (HPV), a common sexually transmitted infection, causes most cases of cervical cancer.12,13 In Guatemala, HPV prevalence is approximately 38% among women with normal cytology from the general population.14 Although the HPV vaccines were licensed for use in Guatemala in 2009, the vaccines are not available in Guatemala, and there is not a planned HPV vaccine introduction in national immunization program.4 Reasons that the distribution of the HPV vaccine in Guatemala is not possible at this time include prohibitive costs associated with the HPV vaccine, the lack of a tracking infrastructure to monitor individuals for the three-dose series, limited access to health care, transportation issues, and other competing health and social issues.15–17 The country of Guatemala has a history of societal violence with significant income disparities among the population. The Guatemalan population is largely rural and poor, lacks access to health care services, has low education levels which result in approximately 25% of the adult population being illiterate, and has poor health outcomes. In light of these issues, we thought it would be important to obtain a better understanding of the knowledge, attitudes, beliefs, and behaviors about cervical cancer, cervical cancer screening, HPV, and the HPV vaccine among Guatemalan women. Beginning to identify commonalities and/or differences among women living in rural and urban Guatemalan regions is important for planning future research prior to the development of educational materials and programs to address the cervical cancer burden among Guatemalan women.
Methods Study design. This was a qualitative study using a semi-structured interview guide to conduct interviews among 40 women living in rural and urban regions of Guatemala.
626
Cervical cancer beliefs among Guatemalan women
The study was conducted during August 2012. The Institutional Review Board of The Ohio State University approved the study protocol. Setting. Guatemala, a developing country in Central America, is divided into 22 departments, and has estimated population of 14.8 million. Approximately half of the population lives below the national poverty level and the per capita Gross National Income is $2,870.18 The primary ethnic groups in Guatemala are Ladino (SpanishIndian) and Indigenous Maya, with Indigenous Mayans accounting for nearly 40% of the population. Spanish is the primary language, however there are 24 indigenous languages also spoken throughout the country. Participants and procedures. A purposive sample of women were approached and asked to participate in a study about women’s health. Women were recruited in waiting rooms of two medical missions (medical/surgical clinics operated by a 501(c)(3) organization) where women were seeking health care for their children, at local churches, and local vendors (e.g., laundry facilities). Eligibility criteria included being: a) female, b) 21–65 years old, c) able to speak and understand English or Spanish, d) living in Guatemala, and e) able to provide verbal consent. After potential participants were identified and eligibility determined, a brief consent-script was read to the participants that included all requirements and potential risks of participating in the study. Participants were provided with the opportunity to ask any questions and have their questions answered prior to giving spoken consent. Interviews were conducted in a private location by a member of the research team. Interviews were conducted using a semi-structured guide and were completed, on average, in 15 to 20 minutes. The interviewer, fluent in Spanish and familiar with Guatamala, conducted interviews in Spanish. After completing the interview, participants were given the opportunity to ask any questions they had about cervical cancer and about local cervical cancer screening services. No incentive or compensation was provided to the study participants. Interview guide. An interview guide was developed by the investigators and included open and close-ended questions. No personal identifying information was recorded. The guide was based on the Health Belief Model (HBM),19 and included the following constructs related to cervical cancer, cervical cancer screening, HPV, and the HPV vaccine: “perceived susceptibility,” “perceived severity,” “perceived barriers,” “perceived benefits,” and “self-efficacy” (Box 1). Although the interview guide was not validated, the HBM has been used as a framework for previous cervical cancer screening studies among women in developing countries.20,21 Additionally, demographic characteristics (age, ethnicity, marital status, number of people living in the house, education level, religion, and income), self-rated health, and information about additional health behaviors (e.g., smoking) were collected. Analysis. Descriptive statistics provide overall sample characteristics. Fisher’s exact test was used to compare differences among rural and urban participants. Responses to demographic questions were recorded by the interviewer and transferred to an Excel spreadsheet. Responses to open-ended questions were reviewed and codes developed. Using the codes, the research team independently coded the responses, reviewed differences, and reached a consensus. There was good agreement between reviewers with a Cohen’s kappa coefficient of 0.816.22
Petrocy and Katz
627
Box 1. HEALTH BELIEF MODEL: CONSTRUCTS AND EXAMPLES OF SURVEY QUESTIONS Construct
Examples of Questions
Perceived Susceptibility Do you know how women get cervical cancer? Have you ever heard of Human Papillomavirus or HPV? If yes, can you tell what it is and how a woman gets HPV? Perceived Severity
Do you think cervical cancer is a serious disease?
Perceived Barriers
Have you ever been checked for cervical cancer? If no, why not?
Perceived Benefits
Do you know if there is a way to prevent a woman from getting cervical cancer? If yes, please explain.
Self-Efficacy
Would it be easy for you to go to the doctor if you wanted to check for cervical cancer?
Results Forty-one women were approached to participate in the study. One rural woman refused participation because she was upset about the health of her grandson who was undergoing an operation. The response rate was 97.6% (40/41), including 22 rural and 18 urban women. Participant characteristics and health behaviors. Participants’ demographic characteristics are listed in Table 1. The mean age of the women was 35.3 years. Participants were categorized as rural if they self-identified as living in or near an aldea (village) or as urban if they self-identified as living in or near a ciudad (city). Participants were residents of the following Guatemalan departments: Alta Verapaz, Baja Verapaz, Chimaltenango, Guatemala, El Quiche, and Sacatepequez. Participants from rural compared with urban regions were more frequently Indigenous Mayan (81.8% vs. 33.3%, p
