BACKGROUND

The likelihood that a woman will develop or die from cervical cancer in the US has steadily declined, but the National Cancer Institute SEER predicted that 11,270 women would still be diagnosed with and 4,070 would die from cervical cancer in 20091. According to SEER data, there is a marked disparity in incidence and mortality rates across racial and ethnic groups2. The incidence of cervical cancer in Latina women per 100,000 is 12.7 compared to 7.1 for non-Latina white women. More Latinas are dying from cervical cancer compared to non-Latina whites (3.1 vs. 2.1 per 100,000)2. Since effective screening is available to prevent cervical cancer, higher incidence and mortality may be attributed to lapses in screening, failure of the Pap test to detect an abnormality, or inadequate follow-up after an abnormal Pap test result3,4. Pap smear rates and adherence to follow-up after an abnormal test are also lower in Latina women5,6. Differences in screening and abnormal follow-up could be due to language barriers, foreign birth/acculturation, limited education, poverty and lack of insurance7–11. All these factors are more common in Latinas and could influence their compliance with recommended care.

There have been studies exploring patient barriers to cervical cancer screening11–15, attitudes and beliefs about human papilloma virus (HPV) and the HPV vaccine16–18; however, few have focused on barriers to follow-up of an abnormal Pap smear3,6,7,16. Del Carmen and colleagues explored sociodemographic and knowledge differences between Latina and non-Latina women referred to colposcopy7. Little is known about patients’ perspectives regarding experiences with or possible barriers to colposcopy19.

The objective of this study was to examine barriers to colposcopy reported by Latina patients receiving care in an urban community health center. We sought the perspective of new patients, patients who had already had a colposcopy and patients who were part of a cervical outreach (patient navigator) program. By better matching barriers to colposcopy with potential interventions, our goal is to increase adherence rates in low-income Latina women.

METHODS

Design

We conducted a qualitative, descriptive study of Latina patients with abnormal Pap smears referred for colposcopy to obtain in-depth information about potential barriers to receiving recommended follow-up care. The study was approved by our institutional review board.

Setting and Participants

Participants included women referred from the Massachusetts General Hospital Chelsea Health Care Center (MGH Chelsea). This urban, multi-specialty community health center in Chelsea, MA, serves a multiethnic, low-income, heavily immigrant and refugee community. Over 23% of Chelsea’s 35,080 residents live below the poverty level, and it has the second largest percentage of Latinos (48%) of any city in the state20. The cervical cancer incidence is two and a half times the state average (16.3 vs. 6.5 per 100,000)21, and mortality is 1.8 vs. 1.5 per 100,00022.

Interviews were conducted at the MGH colposcopy clinic located on the main hospital campus. The clinic sees around 1,800 patients per year (21% from MGH Chelsea). Women were eligible for the study if they received their primary care at MGH Chelsea, were referred to colposcopy because of an abnormal Pap smear and identified themselves as Latinas. A convenience sample of patients meeting these criteria was identified using the colposcopy clinic’s scheduling system. Patients were called by a bilingual research assistant to schedule an interview during their colposcopy visit, and were excluded if they did not speak English or Spanish, or had major physical or mental co-morbidities.

Interviews

An interview guide (Text Box 1) was developed based on previous studies of barriers to colposcopy in racial and ethnic minorities6,7,19, as well as informal interviews with MGH Chelsea navigators and health care providers. A research assistant was trained to conduct semi-structured one-on-one patient interviews of approximately 10-15 min using this guide. The interview collected demographic information, followed by questions on how participants were informed about needing a colposcopy and their knowledge of and beliefs about colposcopy. If this was the participant’s first visit to the colposcopy clinic, she was classified as a “new patient,” and further open-ended questions were asked to explore her experiences, problems and concerns to date. If this was a follow-up visit, the participant was classified as a “follow-up patient” and further questions explored both previous and current experiences, problems and concerns. Participants enrolled in the MGH Chelsea Cervical Outreach Program because of missed colposcopy appointments or identified by a clinician as ‘at-risk’ were classified as “navigated patients” and asked the same questions as follow-up patients. The study sought to recruit equal numbers of women from each of these three groups to ensure a broad range of experiences and insights, and for comparison purposes. The research assistant described the study to participants, provided a fact sheet about the study, answered questions and obtained verbal consent. Interviews were performed from September to December of 2008.

Analysis

All interviews were tape recorded, transcribed verbatim, and translated by a certified medical interpreter if needed. Transcripts were analyzed after 5, 12, 18, 30 and 40 interviews were completed. After analyzing 40 interviews, it was determined that saturation was achieved since no new themes emerged from the last ten transcripts.

Content analysis of the transcripts was performed to synthesize findings and identify key themes. The data were analyzed using the “framework method” described by Ritchie and Spencer23. To become familiar with the data, the interview transcripts were independently reviewed by the two research assistants, with senior researcher oversight. Preliminary themes began to emerge during the familiarization phase, leading to the development of an initial thematic framework. Theme counts were performed through indexing of transcripts, and data were subsequently charted and organized by overarching theme. In the mapping and interpretation phases, patterns and differences among the three categories of interviewed women were explored. The analysis team met bi-monthly to review data, discuss new insights, confirm existing and generate new themes. Interrater reliability about the themes and supporting data were always greater than 90%. Disagreements were resolved through discussion until the group achieved consensus.

RESULTS

Study Participants

Sociodemographic characteristics of the 40 participants are shown in Table 1. Three women approached declined to be interviewed (93% response rate). All self-identified as Latinas, with most speaking only Spanish. The average age was 31.5 (range 18–55). Less than a third (28%) reported being married, and close to two-thirds (63%) had children in their care. Twenty-five participants (63%) were employed at the time of the interview. For 12 participants (30%), it was their first colposcopy clinic visit (classified as “new patients”). Fifteen (38%) were there for a follow-up visit (“follow-up patients”), and 13 (33%) were enrolled in Chelsea’s Cervical Outreach Program (“navigated patients”). Most women (60%) had lived in the US for 5 or more years, eight were recent immigrants, and eight had lived in the US their whole lives.

Table 1 Patient Demographic Characteristics
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Findings Overview

A range of barriers were identified, and four main themes emerged: (1) anxiety/fear of the procedure and/or of diagnosis; (2) scheduling difficulties including appointments interfering with work and/or childcare, and transportation-related issues; (3) inadequate communication about appointments and lack of explanation about the diagnosis, procedure and/or results; and (4) pain associated with the procedure. These themes were categorized as personal barriers (anxiety/fear, and concerns about pain) or systems barriers (inadequate communication and scheduling difficulties) (Table 2). Follow-up and navigated patients more commonly reported concerns about pain, and new and navigated patients more commonly reported anxiety/fear, particularly of results (navigated patients). Systems issues were more common in new patients.

Table 2 Barriers to Follow-Up of Abnormal Pap Smear Results
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Personal Barriers

Anxiety/Fear

For all women, anxiety/fear regarding the colposcopy and/or its results was a common theme.

Diagnosis/Results

Anxiety/fear around diagnosis/results was the most frequently expressed type of anxiety/fear: about half of participants shared a fear that the procedure would result in a cancer diagnosis. As one woman stated, “there’s always a little bit of fear when they tell you they are going to do a colposcopy…I think maybe I could have cancer.” Many participants fear the unknown since they have no experience with and little knowledge of colposcopy or cervical cancer: “at the beginning I was scared, I was nervous, I did not know what was going on…I thought I had cancer.” Some participants also feared an HPV diagnosis. As stated by one, “Before all of this I was crying…I don’t know, maybe I just overreacted on what the nurse told me who called to explain the possible HPV. That’s what you hear a lot about now. Before, you never really heard too much about that. That made me nervous. It scared me, you know?”

Fear of Procedure

Several participants expressed fear of the procedure, although less commonly than fear of diagnosis: “I’m more afraid of the results than the procedure.” Fear of the procedure was often connected to fear of physical pain (see below). One participant’s comment demonstrated this link: “I was worried. I was afraid. I thought it would hurt and I was afraid of what they might find”.

Embarassment

Anxiety/fear was often coupled with feelings of surprise or embarrassment regarding possible diagnoses, and/or confusion due to lack of knowledge or understanding about why the procedure is done and what the results might mean. This connection is exemplified in the following quote: “I was embarrassed because of what I have. The girl who called said I have an abnormal Pap. I think maybe I have an infection or bacteria, and I don’t know why. She also mentioned cancer, and I was worried…I am very confused and worried. I thought I might have something serious.” Embarrassment was most commonly reported among new patients.

Childbearing Concerns

Another source of anxiety and fear for participants was uncertainty about whether the test results would influence their health in the future, particularly pregnancy. “I worry that they keep coming back abnormal. I am also trying to get pregnant, so I don’t know…well, I worry about these results and how they will affect my pregnancy.”

Pain

Although the least commonly reported barrier was concern about, fear of and prior experiences with pain/discomfort, for one participant it was a main reason for missing a prior appointment: “I didn’t want to come, because it’s uncomfortable and I just put it off.” A few participants felt misinformed about how painful the procedure would be: “They said it would be like a pinch, but it’s a bit more than that.” Pain during previous colposcopies was a more often reported barrier in follow-up compared to navigated patients.

System Barriers

Scheduling Difficulties

Many participants identified scheduling and transportation difficulties as barriers to care, including lack of timely colposcopy appointments and clinic hours that conflicted with work schedules or childcare responsibilities. These barriers were most common in new patients.

Work Conflicts

Work-related issues were cited by a third of participants. In order to attend appointments scheduled during work hours, participants often had to request uncompensated time off work: “I am a single mom, and if I lose two hours of work then I can’t make it up…I need to feed my children.” Work-related issues were most common among new patients. Three participants who had missed past appointments cited work-related reasons.

Childcare Conflicts

Scheduling difficulties associated with childcare were cited by almost a quarter of participants. As stated by one participant, “I leave them with my husband, so he needs to take time [from work] to stay with them while I come to the appointment.” Some participants bring their children to appointments: “I kept her [daughter] from school…I had to bring her with me. I had no one to pick her up from school. She was in the room when I had the appointment.”

Lack of Appointment Availability

Several participants, particularly new patients, identified lack of availability of timely appointments as a barrier: “I just tried to get an earlier appointment. I didn’t want to wait…they had none.” Waiting to get an appointment after being told of an abnormal test result was a source of stress: “I was crying…I was a bit nervous…I wanted to be seen tomorrow. I wanted to hurry up and get seen you know? I thought I had cancer.”

Transportation Issues

Transportation represented a barrier for a quarter of all participants. Although Chelsea is only 5 miles from the colposcopy clinic, for some: “The commute is too long…It’s about an hour to get here. I wish there were something easier.” The clinic is also outside of the participants’ community: “I was late because I’m not familiar with the area.” Even patients familiar with the hospital still felt overwhelmed: “They said if I knew how to get to the hospital then I would know where to go. Well, I know the hospital…but I did not know where to go.” New patients were particularly prone to experiencing transportation issues, with half getting lost or arriving late for an appointment. Navigated patients rarely experienced these issues: “Last time the navigator took me, so no problems.”

Inadequate Communication

The other system-related theme was inadequate communication. Communication breakdowns were related to three main areas: (1) lack of explanation about the procedure, diagnosis or results, (2) inadequate appointment or results notification and (3) language barriers.

Lack of Adequate Explanation

Lack of adequate explanation about the procedure, diagnosis or results was the main form of inadequate communication reported. Close to half of new patients felt the colposcopy was inadequately explained. Conversely, only one navigated patient did not receive adequate explanation of the procedure/diagnosis. One patient’s experience highlights this issue: “They did not tell me anything. They just said I had an appointment and that I had to come here.” When asked if anyone explained why she needed a colposcopy, another said: “They didn’t say. I just got the appointment by letter. They didn’t tell me anything…I did receive a pamphlet explaining the appointment and it said that I probably had an abnormal Pap.” Some participants received an explanation but did not clearly understand it.

Inadequate Appointment/Results Notification

Some participants, especially new patients, reported inadequate notification from the clinic regarding their appointments or colposcopy results, which often contributed to anxiety: “well, if there were something wrong, I’m sure they would have told me by now…but I worry.” One participant expressed frustration about both her appointment and results notification: “I was very upset at how I found out I needed to come here. I got the appointment for the colpo before the doctor even told me something was up. I got the letter in the mail, no call, no results…no nothing…When you get bad results, you just don’t get it in the mail, and that’s how I got it. I wanted a call…Three days later I got a letter from the nurse telling me what the results were.”

Language Barriers

Language barriers, such as receiving materials in English when needed in Spanish, were mentioned by only two participants. Most women had Spanish-speaking staff and interpreters available at the colposcopy clinic when needed.

DISCUSSION

Lowering the incidence of cervical cancer requires understanding why women do not get screened for cervical cancer and why women with abnormal screening tests do not complete follow-up evaluations, including colposcopy. This is the first qualitative study exploring patient-perceived barriers to colposcopy in low-income Latina women, some of whom received navigation services to help reduce barriers to care. We focus specifically on Latina women because this group is known to have the highest cervical cancer incidence and mortality rates2,24.

Many of the barriers perceived by the Latina women in our sample have been previously described in the literature as possible reasons for non-adherence to colposcopy in other women. Anxiety/fear is often due to insufficient knowledge and understanding about the purpose of colposcopy25,26. Studies show that anxiety in women referred to colposcopy can be significantly decreased by sending a one-page handout or culturally tailored educational brochure prior to the appointment27–29. Anxiety/fear about the diagnosis as well as potential for cancer in particular is one of the most commonly cited possible barriers to colposcopy, especially in low-income minority women25,30,31. As described by Reynolds, Latina women may be torn between wanting to know and being afraid to find out if they have cancer9. In our study, anxiety/fear about cancer was more common in older participants, while younger women were more concerned about HPV. Misinformation or misunderstanding of available information about HPV and cervical cancer is common and variable in multiethnic low income populations16–18. Childbearing issues post-colposcopy are also described in the literature31,32.

The most common systems barrier identified by our participants, particularly new patients, was scheduling difficulties and lack of timely appointments. Work and child-care responsibilities also contribute to missed appointments32,33. Inadequate communication, our second most prominent systems barrier, was recognized and targeted in Project SAFe, which was designed to improve abnormal cervical screen follow-up among low-income Latinas33.

Low English proficiency in Latinas is described in the literature as a barrier to receiving physician recommendations to have a Pap smear31, but further studies among immigrant populations are needed to determine its influence on adherence to colposcopy. The majority of our participants did not speak English but did not mention language as a barrier.

Comparing barriers perceived by new, follow-up and navigated patients enabled us to recognize the needs of each group and design appropriate interventions. Navigated women enrolled in MGH Chelsea’s Cervical Outreach Program reported similar levels of anxiety/fear and concerns about pain compared to new and follow-up patients, but reported fewer systems barriers. By including navigated women who were targeted because of their increased risk of missing follow-up appointments, barriers reported might be overrepresented due to their higher risk status or underrepresented as a result of receiving navigation services that strive to change attitudes and reduce barriers. It is also possible that women’s attitudes/barriers to colposcopy may be influenced by the education they receive from the navigator. Women may experience either more or less anxiety/fear because of the increased knowledge received through the program about cervical health and about the importance of appointment adherence to detect abnormalities.

Only by understanding the common barriers to follow-up can strategies be implemented to increase successful colposcopy evaluations. Matching participants’ personal and system barriers with interventions to improve abnormal Pap smear follow-up is a goal of outreach programs34–39. Based upon our findings, we propose changes that could improve our cervical outreach (navigator) program and adherence to colposcopy (Text Box 2).

Our study has several limitations. We focused on Latina women because they represent 75% of all patients referred from our health center to the colposcopy clinic. Though Latina women have the highest cervical cancer incidence and mortality rates, other low-income minority groups are also at risk, and our results may not apply to them. Latina women in this small study represented a range of countries of origin, years in the US and ages, but these results may not generalize to all Latina populations. The study setting, an urban community health center that already has a program to assist Latina patients, may result in underestimating the challenges faced by women in settings without such efforts. We also did not interview patients who failed to follow-up on an abnormal Pap test, and their issues may have differed from those of the patients who were interviewed. However, a third of the women (navigated patients) had missed at least one colposcopy appointment in the past, and their concerns were similar to the other groups. Nevertheless, future studies that focus on the women who have not yet completed a follow-up visit might provide additional insights into barriers associated with not evaluating an abnormal Pap result. To compare the groups interviewed, we heavily relied on counts of themes. For personal barriers that emerged spontaneously, it is difficult to know whether some themes were not mentioned by women because they were not important, they just did not come to mind or were so obvious to the participant that she did not think she should mention them. Thus, these barriers might be underreported in our study. On the other hand, systems barrier items were explicitly suggested in questions 3a and 3b (Text Box 1). Because of differences in ascertaining personal and systems barriers, it may not be appropriate to compare frequencies between them. Finally, though we developed an interview guide and used a highly trained interviewer, the use of two or more interviewers may have decreased bias associated with individual style or emphasis.

Understanding why some Latina women are not receiving colposcopy after an abnormal Pap smear is important to reduce racial and ethnic disparities in cervical cancer mortality and morbidity. Our findings add to those previously reported and support directed interventions to address these barriers in low-income Latina patients in urban settings to improve adherence to follow-up after abnormal Pap smear results.