There have been studies exploring patient barriers to cervical cancer screening^11–15, attitudes and beliefs about human papilloma virus (HPV) and the HPV vaccine^16–18; however, few have focused on barriers to follow-up of an abnormal Pap smear^3,6,7,16. 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.

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 colposcopy^25,26. 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 appointment^27–29. 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 women^25,30,31. 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 populations^16–18. Childbearing issues post-colposcopy are also described in the literature^31,32.

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 appointments^32,33. 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 programs^34–39. 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.