Abstract
Purpose:
Underserved Black and Hispanic/Latinx women show low rates of follow-up care after an abnormal Pap test, despite the fact that cervical cancer is one of the few preventable cancers if detected early. However, extant literature falls short on efficacious interventions to increase follow-up for this population. A concurrent mixed methods study was completed to evaluate the acceptability of a text message-based intervention and identify perceived barriers and facilitators to follow-up after an abnormal Pap test among underserved predominantly Black and Hispanic/Latinx women.
Methods:
Patients who completed follow-up for an abnormal Pap test were recruited to complete a cross-sectional survey, qualitative interview assessing barriers and facilitators to follow-up, and text message content evaluation (N=28). Descriptive statistics were performed to describe background variables and to evaluate the acceptability of text messages. A directed content analysis was completed for the qualitative interviews.
Results:
Participants expressed interest in a text message-based intervention to increase abnormal Pap test follow-up. In the qualitative interviews, low knowledge about cervical risk and negative affect towards colposcopy/test results were identified as barriers to follow-up. Facilitators of follow-up included feeling relieved after the colposcopy and adequate social support. Participants rated the text messages as understandable, personally relevant, and culturally appropriate.
Conclusions:
The findings suggest that underserved Black and Hispanic/Latinx women experience cognitive and emotional barriers that undermine their ability to obtain follow-up care and a text message-based intervention may help women overcome these barriers. Future research should develop and evaluate text message-based interventions to enhance follow-up after an abnormal Pap test.
Keywords: cervical neoplasm, mHealth, health communication
Introduction
Despite significant decreases in cervical cancer incidence and mortality in the US, there is a persistent and disproportionate burden of cervical cancer among underserved Black and Hispanic/Latinx women [1, 2]. Hispanic/Latinx women experience the highest incidence rates among all racial/ethnic groups (9.6 per 100,000 women) followed by Black women (8.9 per 100,000 women) compared to an incidence rate of 7.3 per 100,000 White women. Additionally, Black and Hispanic/Latinx women experience greater mortality rates (3.3 per 100,000 and 2.4 per 100,000 women, respectively) compared to White women (2.1 per 100,000 women) [3]. Notably, Black and Hispanic/Latinx women are diagnosed with regional or distant metastases at significantly greater rates than non-Hispanic/Latinx White women [4], resulting in lower 5-year relative survival rates compared to localized diagnoses [4, 5]. Cervical cancer is one of the few preventable cancers due to Papanicolaou (Pap) testing, along with the Human Papillomavirus (HPV) vaccination [6, 7].
However, individuals who receive an abnormal Pap/HPV test must receive timely follow-up care to confirm and manage precancerous or cancerous lesions before cancer progresses to more advanced stages [8]. Nationally, while non-Hispanic/Latinx Black women in the U.S. report pap smear testing rates equivalent to non-Hispanic/Latinx White women, rates of follow-up after an abnormal test are significantly lower among non-Hispanic/Latinx Black women [9]. This is consistent across research studies that find high rates of non-attendance to follow-up appointments among low-income non-Hispanic/Latinx Black and Latinx women (66-82%) compared to rates of 0-34% among non-Hispanic/Latinx White women [10, 11].
Low-income Black and Hispanic/Latinx populations report greater barriers to access [1], including difficulty scheduling or keeping track of appointments [12, 13]; lack of transportation; or job-related difficulties (e.g., unpaid time off) [14]. Additionally, this population experiences psychosocial barriers such as anxiety and fear of pain from follow-up exams or cancer [12, 13], lack of knowledge and low risk perceptions about cervical cancer, and follow-up clinical procedures [13, 15] or poor coping skills [15]. Most interventions targeting follow-up attendance after an abnormal Pap test that use reminder letters and patient navigation have not resulted in a clinically significant increase in follow-up among underserved women [16–18]. In contrast, the Tailored Communication for Cervical Cancer Risk (TC3) intervention is an efficacious telephone-based intervention targeting urban, underserved women [19]. Theoretically-guided by the Cognitive-Social Health Information Processing (C-SHIP) model [20], TC3 targets five psychosocial barriers to abnormal Pap test follow-up: i.e., lower knowledge and risk perceptions, negative beliefs and expectancies (e.g., pain from colposcopy), interfering affect (e.g., high anxiety, fear), values and goals (e.g., low valuing of preventive health behaviors), and self-regulatory skills (e.g., lack of a repertoire for overcoming and coping with access-related barriers).
TC3 is designed for implementation in clinic-based settings and can be delivered by clinic or research staff [19]. Women scheduled for a follow-up appointment after an abnormal Pap test result completed a Cognitive-Affective Barriers Assessment with trained research staff using a computer-assisted telephone interviewing (CATI) system 2-4 weeks prior to the scheduled appointment. Based on the barriers assessment responses, the CATI system identifies the two greatest barriers for each C-SHIP construct and provides tailored messages addressing each barrier (total of 10 messages) that the staff member then orally provided to the patient over the telephone [19]. Intervention materials and an implementation manual are available through the National Cancer Institute’s Evidence-based Cancer Control Programs (https://ebccp.cancercontrol.cancer.gov/index.do).
While TC3 increased follow-up at the initial colposcopy appointment [19], telephone-based interventions place high demand on clinic resources and can be burdensome for participants. Text messaging has been widely adopted across socioeconomic and demographic groups, particularly among underserved Black and Hispanic/Latinx populations [21]. Text messaging interventions in other contexts (e.g., medication adherence) [22, 23] have demonstrated feasibility among urban, underserved populations [22–27] and offer flexibility [28, 29] and tailoring [30] that can increase reach and impact. Additionally, underserved women report interest in receiving text message reminders to attend their abnormal Pap test follow-up appointment [31, 32]. However, the acceptability [33] of tailored text messages targeting barriers to follow-up after an abnormal Pap test have not been evaluated.
Therefore, we conducted a concurrent mixed methods study to (a) assess the acceptability of adapting the TC3 telephone protocol to text messaging, among predominantly Black and Hispanic/Latinx women recommended for follow-up after an abnormal Pap test. Acceptability of the TC3 message content has already been tested in our previous work and implemented with the same clinic population [19]. Additionally, we conducted the study to (b) confirm our categorization of patients’ reported barriers and facilitators to attendance to follow-up appointments.
Methods
Participants
Participants were recruited at a colposcopy clinic at an urban, academic safety-net hospital in Pennsylvania in June and July 2015. Women were eligible if they (a) were aged 18 years or older, (b) had received follow-up care for an abnormal Pap test within the last 5 years, (c) were able to communicate in English, and (d) competent to consent. The hospital’s clinical protocol during the study period recommended initial colposcopy followed by repeat colposcopy at 6- and 12-months for women who receive an abnormal Pap test.
Eligible patients were identified by colposcopy clinic nurses and given a recruitment flyer upon check-in for their follow-up appointment. Patients interested in participating were invited to a private room to learn more about the study and an interview was scheduled for a later date either in-person or via phone, based on participant preference. The consent process and all data collection were completed by either a clinical psychologist or health educator, both of whom were trained in quantitative and qualitative methods. Each participant received a $20 gift card. The study was approved by the Fox Chase Cancer Center and Temple University Institutional Review Boards.
Quantitative survey measures
Demographic characteristics included race/ethnicity, age, marital status, employment, education, household income, and number of children. Medical characteristics included cancer history, comorbidities, frequency of previous Pap tests, and number of previous abnormal Pap tests. We also assessed health literacy using a 3-item health literacy scale [34, 35]. Health literacy is considered “low” if the individual answers 3 (“sometimes”/“somewhat”) or more (“often”/“a little bit” and “always”/“not at all” on a 5-point Likert scale) to each item (for a total score of 9 or more) [34, 35].
Message evaluation
We focused on women who attended their colposcopy visit, to determine the barriers they faced and the strategies they used to overcome these barriers. This is a key component of informing the text messaging platform development. Our approach uses the basic principles of the Simulation Theory [36]: participants were asked to imagine themselves in the targets’ situation (i.e., not attending follow-up after an abnormal Pap smear result) and to picture what barriers may have been operative. This strategy, “retrodictive simulation,” is commonly used to hypothesize an explanation for the targets’ behavior (e.g., missing the follow-up appointment) by mentally simulating missing the appointment [36]. We also employed this method to develop the original telephone-based intervention [19], drawn from the same clinic population of underserved Black and Hispanic/Latinx women. Focus group questions asked participants what would have prevented them from attending the follow-up appointment and to identify the barriers that women with the same background might experience. We also asked women to empathize with someone who did not attend their appointment and to imagine what barriers this person might have faced.
Acceptability, appeal, and appropriateness of the C-SHIP-based barriers messages were completed during the development of TC3 [19] through expert review (i.e., expert panel with two behavioral scientists, one gynecologic oncologist, and one health communication specialist) and focus groups testing the messages with members of the target population (n = 40) (e.g., “What are some reasons you might have for not going to the clinic for follow-up testing as a result of your abnormal pap smear result?”, “Specifically, what would stop you from coming in for your follow-up colposcopy if this exam is recommended?”, “What do you think would help make it easier for more African Americans or Latina women to get screened?”) [19].
To ensure that the C-SHIP-based barriers messages used in TC3 were still relevant to the current target population, participants rated the understandability, personal relevance and cultural appropriateness of the 25 messages (Table 1), using a 5-point Likert-type scale (1=very dissatisfied to 5=very satisfied). Participants were provided with a printed criteria checklist during the evaluation to guide their ratings: (1) Do these messages make sense? Are they confusing or unclear? (2) With your cultural background, are these messages appropriate in content and wording for women? If not, how would you write them differently? (3) Do you think these messages would have helped you in dealing with your problems with coming into the clinic for colposcopy and follow-up recommendations? (4) Other comments or feedback? Messages that received negative feedback (e.g., hard to understand) and/or low-rated items (mean score less than 3) were flagged for possible removal. Since the Hispanic/Latinx population of the clinic is predominantly English speaking and prefer intervention materials in English, the intervention was only delivered in English.
Table 1.
C-SHIP Barriers Messages
| I. Knowledge and Perceptions |
| 1. An abnormal Pap smear means that some cells on your cervix look different from regular cells. This does not mean you have cancer of the cervix. But it does mean that you have some cells that could grow and become unhealthy. Most changes in the cervix happen very slowly. These changes can almost always be treated so that you don’t get cancer of the cervix. |
| 2. A colposcopy is a 15-minute exam that lets your doctor look closely at the cells on your cervix. The doctor does this exam with a colposcope. A colposcope uses a bright light and a special lens to make cells easier to see. The doctor will examine your cervix to see what type of cell changes are taking place and how best to treat those changes. The doctor may take a biopsy. A biopsy is when the doctor takes a sample of the cells on the cervix; you may feel some pinching. The sample is then sent to a lab to be looked at more closely under a microscope. |
| 3. Almost all cancer of the cervix is caused by HPV. HPV is a common virus that is passed through intercourse or between a mother and her baby during pregnancy or delivery. In some women, the HPV virus causes changes in the cells of their cervix. These changes are not always cancer, but they can become cancer if not treated. If doctors see the type of cell changes that can grow into cancer, they need to remove those cells so they don’t grow into cancer. |
| II. Expectancies and Beliefs |
| 4. What you believe about your cervical health and what you expect from your medical care is important. It can make a difference to your health. Feeling confident that your doctor can take care of the changing cells on your cervix and knowing that there are things you can do to prevent yourself from getting cancer will make it easier for you to come in for your scheduled colposcopy appointments and follow-up exams. |
| 5. An abnormal Pap smear does not mean you have cancer. In fact, most women with an abnormal Pap smear do not have cancer. Most likely, you have changes in your cervical cells that can be treated so that they will never turn into cancer. |
| 6. In a colposcopy, the doctor looks directly at your cervix to see if there are any abnormal cells. To be sure, your doctor might take a small sample of cells to view under a microscope. This is called a biopsy. Both tests will help your doctor decide what treatment is best for you. |
| 7. You can prevent cancer of the cervix by coming for your colposcopy and follow-up appointments. When your doctor says you need a colposcopy and follow-up appointments, you can take action to keep yourself healthy by coming in to the clinic. |
| 8. These appointments are the best way to prevent cervical cancer and protect your health. Think about ways you were able to keep doctor appointments or other dates that were important to you in the past. Ask others for help. |
| 9. You will be asked to come back for at least two more appointments over the next year to get treatment and more screening. These appointments are very important for your health. |
| III. Affect |
| 10. Most women who have an abnormal Pap smear do not have cancer. If you do what your doctor tells you to do, you can stay healthy by treating the cells that are changing. Many women feel better when they learn their condition may be easily managed. |
| 11. Most women feel little or no discomfort during the colposcopy. Sometimes you can feel pricking or pinching. If you are worried about pain, tell the doctor so the doctor can tell you more about what you might feel. |
| 12. The treatments after colposcopy are not painful. They take about 15 minutes, and are often done in the clinic. There is more than one way to remove the changing cells on your cervix. The doctor will decide which treatment is best for you. |
| 13. These tests should not affect your ability to have and enjoy sex. Once in a while, a woman may say that she feels less interested in intercourse, or doesn’t enjoy it as much. Usually this passes quickly. If this happens to you, please ask for help from your doctor. |
| 14. If your sexual partner does not have HPV and you do, you could pass the virus to that person. Use a condom to protect your partners. However, almost everyone who has sex (and even some people who haven’t) carries the HPV virus. |
| IV. Values and Goals |
| 15. It is important to go to all of your recommended clinical appointments and check-ups since many cervical problems often have no obvious symptoms. The only way for your doctor to make sure that you are healthy is for you to attend your clinical appointments. |
| 16. Women can feel like their body has let them down, as if something has gone wrong. In fact, your body is telling your doctor that there are some changes that need treatment. Coming in for treatment will help you feel good about taking care of your body. |
| 17. If getting pregnant and having a child is important to you, you need to protect your health. By keeping your appointments and listening to your doctor, you are making sure that nothing physical will get in the way of your plans for having a child. |
| 18. The colposcopy and any follow-up treatment should not change your sex life. In fact, coming to your clinic appointments is the best way to protect it. You should still enjoy intercourse, but your doctor may ask you not to have sex for a couple of days after the procedure. |
| 19. Some women can feel embarrassed about private parts of their body. But don’t let this stand in your way of keeping yourself healthy and cancer-free. Your doctor and nurse are trained to be sensitive to you. Your privacy is very important to them. |
| V. Self-Regulatory |
| 20. Women have many ways to cope with hearing that they have abnormal Pap results. You may be used to coping with worries about your health, and know how to cope with any concerns you have about your abnormal Pap results and your scheduled appointment. Making plans in advance is the best way to make sure that you come in for your scheduled colposcopy appointment and for all your follow-up appointments. |
| 21. Some women feel upset by an abnormal Pap smear. You are not alone. Many women have been in this situation. If you are feeling upset, it might help to talk to your friends or family. You could also try to keep busy doing things you like to keep your mind off of your worries. |
| 22. If money is tight, medical assistance will pay for the exam. Other insurance plans have low-cost co-pays. If you have no insurance, please ask the clinic manager about payment plans. If you need a referral letter please bring it with you, since the exam cannot be done without it. |
| 23. If you might forget the appointment, put a note in your calendar or on your fridge. You could ask a friend you trust to call you on the day of your appointment. Bring your calendar with you to the clinic, so you can make appointments that fit your schedule. |
| 24. If you need a babysitter, try to make plans with people you can trust to watch your child. If your appointment interferes with your work schedule, try to take a personal day or speak with co-workers about ways to get coverage. |
| 25. If you have trouble getting to the clinic, you can call SEPTA at 215-574-7800 or visit their website www.septa.org for bus and train routes to the hospital. Or you can try to get a ride with a friend. Pick a friend that you can trust, because it is very important that you get to the appointment. |
Interview procedures
Individual structured interviews were completed to ask participants about their perceived barriers and facilitators to attending follow-up appointments after an abnormal Pap test. Participants were also asked about their cell phone usage (e.g., total minutes used per day, frequently used features on cell phone) and intervention preferences (e.g., interest in the intervention, preferred frequency of the messages). Individuals also provided information about the types of activities carried out over their phones. Interviews lasted 30-45 minutes and were audio-taped and transcribed for content analysis.
Quantitative Analyses
Descriptive statistics (e.g., frequencies, means, standard deviations) were conducted to describe demographic and medical variables, cell phone usage, delivery preferences for barriers messages, and message evaluation. SPSS version 24.0 was used for data entry and analysis.
Qualitative Analyses
Qualitative analyses of the interview transcripts were guided by the C-SHIP model and previous intervention research for follow-up to abnormal Pap test results among underserved predominantly Black and Hispanic/Latinx women [19]. Two researchers trained in conducting qualitative research independently coded the interviews using Atlas.ti version 7 through an open-coding process based on a directed content analysis approach. The researchers used the C-SHIP model’s five constructs (knowledge and risk perceptions, beliefs and expectancies, affect, values and goals, and self-regulatory skills) to create the codes’ scaffolding, independently coding three randomly selected interviews to identify key concepts and develop codes that represented the meaning of each concept. The researchers then met to compare the codes they had created and develop a final codebook. The codebook was then used to double check the first interviews, comparing the codes from the final interviews with those from the first ones to verify the relevance and applicability of the data interpretation. A percent agreement was then created among a randomized 25% sample of interviews: the two coders reached an agreement of 86%. Disagreements in the coding process were resolved and a final 100% agreement in the coding process was reached.
Results
Demographic and medical characteristics.
28 participants were enrolled to achieve a balance between the principle of data saturation [37], according to which sampling stopped when no new themes emerged from interview data, and the capacity to enroll additional participants in the study. The majority of study participants were Non-Hispanic/Latinx Black (n = 19; 68%), single or never married (n = 20; 71%), and had a mean age of 40 years (SD = 12.5; Table 2). We included three non-Hispanic/Latinx White women in order to achieve a representative sample of patients at the safety-net colposcopy clinic. Most participants were unemployed (n = 13; 46%); 25% had less than a high school diploma (n = 7), and had a household income of $15,000 or less (n = 20; 71%). Most participants (96%) had low health literacy on the Chew scale [34, 35], defined as participants who scored 9 or greater (M = 12.35; SD = 2.62). Half of the participants reported having a Pap test every six months (n = 14; 50%) and 36% reported an annual Pap test (n = 10).
Table 2.
Sociodemographic characteristics and intervention delivery preferences (N=28)
| Characteristic | n (%) or M (SD) |
|---|---|
| Age | 40 (12.5) |
| Race/Ethnicity | |
| Non-Hispanic Black | 19 (67.9) |
| Hispanic/Latinx | 6 (21.4) |
| Other | 3 (10.7) |
| Marital | |
| Single/never married | 20 (71.4) |
| Single living with S/O | 3 (10.7) |
| Divorced/separated | 4 (14.3) |
| Widowed | 1 (3.6) |
| Employment status | |
| Employed | 6 (21.4) |
| Unemployed | 13 (46.4) |
| Retired | 2 (7.1) |
| Disabled | 7 (25.0) |
| Education | |
| < HS diploma | 7 (25.0) |
| HS diploma or GED | 9 (32.1) |
| Vocational or some college | 10 (35.4) |
| College graduate | 2 (7.2) |
| Household Income | |
| ≤ $15,000 | 20 (71.4) |
| ≥ $15,001 | 8 (28.5) |
| First abnormal Pap test result | 9 (39.1) |
| Health literacy (max score = 15) | 12.3 (2.6) |
| Cell phone usage per day | |
| ≤ 4 hours | 5 (25.0) |
| 5-11 hours | 8 (40.0) |
| ≥ 12 hours | 7 (35.0) |
| Time spent texting per day, | |
| ≤ 4 hours | 15 (71.4) |
| 5-11 hours | 3 (14.3) |
| ≥ 12 hours | 3 (14.3) |
| Frequently uses feature on cell phone | |
| Text messaging | 14 (50.0) |
| Phone calls | 11 (39.3) |
| Social media | 8 (28.6) |
| 14 (50.0) | |
| Other | 14 (50.0) |
| Interested in text messages | 25 (89.3) |
| Preferred ability to respond to text messages | 24 (100) |
| Preferred method of receiving messages | |
| Text messaging | 19 (70.4) |
| Phone calls | 2 (7.4) |
| Social media | 1 (3.7) |
| 8 (29.6) | |
| 5 (18.5) | |
| Other | 2 (7.4) |
| Message content | |
| Information | 18 (78.3) |
| Support | 17 (70.8) |
| Advice | 12 (52.2) |
| Reminders | 17 (81.0) |
| Stress-related content | 16 (64.0) |
| Frequency of the messages | |
| Once per month | 3 (12.0) |
| 2-3 times per month | 1 (4.0) |
| Once per week | 2 (8.0) |
| ≥ 2 times per week | 17 (68.0) |
| As often as there are important notices | 1 (4.0) |
| Only before appointment date | 1 (4.0) |
Phone usage and participants’ perception of intervention
As shown in Table 2, most participants used their cell phone between 5 and 11 hours per day (n = 8; 40%) or more than 12 hours (n = 7; 35%). The types of activities individuals carried out over the phone were texting (n = 14; 50%), making phone calls (n = 11; 39%), using social media (n = 8; 29%), sending email (n = 14; 50%) or engaging in other activities (n = 14; 50%) such as playing games, using the calendar, writing reminders, listening to the radio, taking photos, shopping online or surfing the internet. The majority were interested in receiving text messages (n = 25; 89%), preferred having the ability to respond to text messages (n = 24; 100%), and endorsed receiving the messages two or more times per week (n = 17; 68%). More than half of participants were interested in at least one type of proposed message content: appointment reminder (n = 17; 81%), information (n = 18; 78%), support (n = 17; 71%), advice (n = 12; 52%), and stress-related content (n = 16; 64%).
Acceptability of text messages
Participants reported high rates of satisfaction about the understandability, personal relevance, and cultural appropriateness of assessment questions and messages (Table 3). Questions and messages that assessed the “Knowledge” component of the C-SHIP model were considered the most personally helpful (M = 4.81; SD = 0.34) and the most culturally appropriate (M = 4.70; SD = 0.53), while those which assessed “Values and Goals” were evaluated as the most understandable (M = 4.80; SD = 0.41). None of the messages received negative feedback or low ratings and therefore, none were removed from the message bank.
Table 3.
Tailored text message evaluation
| C-SHIP Construct (Total number of messages) | Personally Helpful | Understandable | Culturally Appropriate |
|---|---|---|---|
| M (SD) | M (SD) | M (SD) | |
| Knowledge and Perceptions (3) | 4.81 (0.34) | 4.65 (0.56) | 4.70 (0.53) |
| Expectancies and Beliefs (6) | 4.72 (0.49) | 4.75 (0.46) | 4.68 (0.59) |
| Affect (5) | 4.63 (0.51) | 4.79 (0.41) | 4.63 (0.62) |
| Values and Goals (5) | 4.65 (0.55) | 4.80 (0.41) | 4.65 (0.69) |
| Self-regulatory Skills (6) | 4.60 (0.67) | 4.76 (0.54) | 4.56 (0.76) |
| Overall | 4.68 (0.40) | 4.75 (0.36) | 4.64 (0.56) |
Note. Range: 1 (very dissatisfied) – 5 (very satisfied)
Qualitative Interview
Participant responses were coded using the five C-SHIP model constructs: knowledge and perceptions, beliefs and expectancies, affect, values and goals, and self-regulatory skills (Table 4). For each construct, we then identified factors that supported patients from attending follow-up appointments (facilitators), prevented patients from attending follow-up appointments (barriers), and factors that could serve as a facilitator or barrier.
Table 4.
C-SHIP themes and subthemes from qualitative interviews
| Theme/subtheme | Definition | Example Quotes | Barrier or facilitator |
|---|---|---|---|
| Knowledge and Perception | Interpretation of self and situations with regard to health and wellness | ||
| Cancer | Patient mentions cancer or indicates that cancer is in her thoughts. Includes personal cancer history and cancer history of those they know. | [The most important aspect when considering whether or not to come back for follow up care was] “cancer, to see if I had cancer. That’s why, yea.” (P23) | Facilitator |
| Lacks understanding | Patient lacks understanding or knowledge about medical information and procedures. | “I was actually told that there’s a possibility that I was tested positive for it, but it wasn’t explained whether it was closer to cancerous or STD, so I don’t understand.” (P6) | Barrier |
| HPV knowledge | Patient indicates knowledge of HPV. | “I don’t know, I was kind of confused because I was wondering if that’s what caused me to get cervical cancer the first time, and how can it actually cause it, and what was HPV.” (P13) | Facilitator or barrier |
| Colposcopy pain | Patient indicates the colposcopy was painful or not painful. | “It just kind of hurt, you know, it was a little more painful than I thought” (P2) or “I just thought it might be more painful or uncomfortable, but it really wasn’t painful or uncomfortable at all.” (P26) | Facilitator or barrier |
| Medical knowledge | Patient feels she had enough knowledge about medical information and procedures. | “I would say I had enough information, so I mean whenever I have a question I ask the doctors, they always answer me, at least here at Temple. That’s one of the reasons I came back” (P4) | Facilitator |
| Expectancies and Beliefs | Beliefs and experiences activated in health information processing | ||
| Self-efficacy | Patient expresses confidence or lack of confidence about keeping her follow up appointment. | “I’m pretty confident about everything, as long as I keep my appointments and, you know, every visit that’s needed, I’ll be fine. I have a team.” (P12) | Facilitator |
| Colposcopy expectations | Colposcopy meets the patient’s expectations or the patient has no expectations for the colposcopy procedure. | “I thought it would be pretty much kind of like a Pap smear, maybe with a little bit of extra procedures.” (P3) | Facilitator or barrier or none (if not expectations) |
| Positive/negative attitude | Patient has a positive or negative attitude about colposcopies, pap tests, or HPV. | “I’d say [the colposcopy] is helpful for me.” (P5) or “[the abnormal Pap test result] is a bad thing.” (P9) |
Facilitator or barrier |
| Affect | Affective states activated in health information processing | ||
| Fear | Patient feels scared or intimidated about the colposcopy procedure/test results, or indicates being scared as a barrier to follow-up appointments. | [I missed three colposcopy appointments because I was scared] “that I was going to be in pain. Rumors I heard that they clip your uterus. I was scared.” (P25) | Barrier |
| Negative affect | Patient feels nervous, sad, worried, paranoid or concerned about the colposcopy or Pap test results. | “Very nervous, since my sister just got diagnosed with cervical cancer. I was very nervous about all of this. Still am.” (P6) Interviewer: How do you feel now? “Same thing. I cried, I prayed over it in there […]” (P8) |
Barrier |
| Felt better or relieved | Patient feels better or relieved from getting the colposcopy over with, or from good test results. | “Just actually finding out what it was and having that relief off me once I did found out what it was. So that was a good thing.” (P7) or “I feel better that I did it, basically. I feel a lot better that I came in ‘cause now I’m doing something about it, I’m not letting it sit.” (P15) | Facilitator |
| Neutral | Patient feels neutral about the appointment and/or test results. | “I felt okay with it. It’s something a woman has to go through. You know, it’s part of life. I had to accept it.” (P22) | Facilitator or barrier |
| Values and Goals | Desired valued health outcomes | ||
| Values health | Patient indicates that she values her health and wellness and wants to do what is needed to be healthy. | “I feel good ‘cause I’m keeping up with my health.” (P19) | Facilitator |
| Values appointments | Patient indicates she values her appointments and does not want to miss them. | “Yea, that’s how my mom raised me, to make sure I didn’t miss my appointments.” (P1) | Facilitator |
| Family | Patient indicates that she values her family members. | “And that’s also what got me keeping my appointments and stuff. I got a family and I want to live long, you know? I want to keep myself checked.” (P12) | Facilitator |
| Mother | Patient indicates she values motherhood and/or her children. | “[The doctor] actually took time to talk to me and say it’s not as bad as you think it is. It can save your life, you know. And I do have two children, so I had to think about it as you need to go in there and get this done and over with.” (P25) | Facilitator |
| Religious | Patient refers to religion/prayer in the interview. | “I understood that it could be cancerous or just maybe an abnormal thing. But it was ok because all I did was pray about it and left it alone.” (P8) | Facilitator or barrier |
| Self-regulatory Skills | Self-regulatory strategies for implementing and maintaining health-supportive behaviors | ||
| Avoidance | Avoidance behaviors to avoid appointments, emotions, or other behaviors. | “I would try to avoid it. And then eventually the problems still there, so then I have to go. I have to go for it.” (P22) | Barrier |
| Coping | Ways the patient copes with stress or emotions. | “I just try to deal, like I said I be sad, I cry sometimes, I be like “you’re strong enough, you can get through anything, don’t let this take you down.” I give myself pep talks, look in the mirror and say you stronger, give yourself the eyes, you know.” (P15) | Facilitator or barrier |
| Info seeking | Patient wants to gain knowledge about medical information. | “Look up on the internet; try to find out what’s going on. I try to do my own research” (P13) | Facilitator |
| Social support | Patient receives social support regarding medical matters, or patient indicates social support/groups as a way to increase follow-up rates. | “Maybe have a group, like a woman’s group for support. That would help. Or maybe talk to a friend.” (P1) | Facilitator |
| Appointment reminders | Patient receives appointment reminders or mentions a desire for appointment reminders. | “When they kept sending the letters, ‘cause I kept getting them in the mail and they said I really need to get it done and stuff. Like I said before it was just like that one time they said it was abnormal and that was it. But now they keep sending me letters so I’m like ‘this could be something serious’.” (P21) | Facilitator |
Note: P = participant
Knowledge and Perceptions.
Participants felt they had low knowledge about HPV and colposcopy. One participant said “[I] really didn’t know anything. I’ve heard of it but I didn’t know anything about it” (participant 3) and another said “At first I didn’t understand [what it means to have an abnormal Pap test]. I think I was confused because they said I had HPV” (participant 19). Further, participants expressed needing more information from their provider. For example, one participant said they wanted “to know if the HPV can cause cervical cancer and, I already had it, I mean before, I’m scared I could get it again ‘cause other stuff can happen” (participant 5).
Conversely, knowledge and perceptions acted as a facilitator for women who discussed content related to cancer, ranging from a simple mention of their abnormal Pap test result, to their personal cancer history, or to the cancer history of women they knew. One participant said “I thought it would be helpful for me. ‘Cause if I did have cervical cancer, like I would like to know in the early stages so it can be taken care of” (participant 6). Another said “My sister just got diagnosed with cervical cancer. I feel like I’m probably at high risk of it, but since I haven’t gotten the results I don’t know what’s going on” (participant 25).
Beliefs and Expectancies.
Participants reported negative beliefs and expectancies towards follow-up after an abnormal Pap test. One participant said “I was expecting pain. But, it wasn’t [painful]” (participant 19). However, participants reported positive beliefs and expectancies towards follow-up after an abnormal Pap test. One participant said the advantages to a colposcopy is “you get checked up, every six months or three months, so you know you’re healthy” (participant 1). Another said “I thought [the colposcopy] was going to be helpful because they can now tell me…my future, if I have cancer, if I don’t have cancer, and if they can catch it on time” (participant 21).
Affect.
Participants reported barriers associated with affect including fear towards the colposcopy procedure or receiving test results. One participant said they don’t think women follow through with colposcopies “because they scared! Those brochures scare them!” (participant 18). Another participant said that when she first learned that she had an abnormal Pap test she felt “scared and uncomfortable. It’s a bad thing. Embarrassing” (participant 17).
Affect can also facilitate patients’ attendance at follow-up appointments. Women reported positive affect after going to the follow-up visits, completing screenings, or understanding the importance of the Pap test or medical appointments. One participant said “I feel better that I did it, basically. I feel a lot better that I came in ‘cause now I’m doing something about it, I’m not letting it sit (participant 7)” while another participant said “Now I feel much better because I might just [be able to] go to regular [primary] care now, and I don’t have to come back” (participant 18).
Finally, participants reported having neutral affect—neither positive or negative—towards their colposcopy appointment. One participant said “I didn’t have any… I just felt like the regular Pap smear, like the regular routine, I didn’t expect… No surprises” (participant 3) while another participant said “I guess I felt okay, I felt okay with it. It’s something a woman has to go through. You know, it’s part of life. I had to accept it. Just that, you know, sometimes you don’t really know what the answers going to be” (participant 15).
Values and Goals.
Women who received an abnormal Pap test result indicated that they strongly valued their health and wellness, and that they would continue to do what is needed to be healthy. According to one participant, “The pros [of coming in for a colposcopy] are that you will know what’s going on with your body. The cons of not coming is that, anything like I said, it can happen outside if you don’t show up for your appointment and you have an abnormal Pap test, you know? It can get away from you” (participant 4) and another said “[One of my values is] my health, knowing what’s going on in my body so that I can take the next step” (participant 10). Religiosity was also a value identified by participants and was a facilitator or a barrier, depending on participants’ individual beliefs. One participant said “I put it in God’s hands [to deal with negative thoughts] (participant 11), while another participant said “I understood that it could be cancerous or maybe just an abnormal thing. But it was okay because all I did was pray about it and left it alone” (participant 8). Additionally, one participant reported that when they first learned about their abnormal Pap test “it didn’t make me sad, it didn’t…I got Christ in my life, and he comforts me” (participant 22).
Self-regulatory skills.
Participants reported using avoidance behaviors to cope with their problems. For example, one participant said that when she faced a problem she “would try to avoid it” (participant 15). Participants also reported coping strategies that helped them keep their follow-up appointments. One participant said “[When I have negative emotions] I look [it] up on the internet; try to find out what’s going on. I try to do my own research” (participant 5) and another participant said “I just try to deal, like I said I be sad, I cry sometimes, I be like ‘you’re strong enough, you can get through anything, don’t let this take you down’” (participant 7).
Lastly, participants reported that receiving social support for medical issues facilitated attending their follow-up appointments. Social support came from family members and friends, as well as formal or informal groups (e.g., religious groups). One participant said “I talk to my daughter all the time. She actually came with me before to find out what was going on. So she was supportive” (participant 5) and another participant said “most of the time, I’ll call my mom, tell her what’s going on and she’ll tell me what she thinks. She calms me down a lot. She’s supportive and my doctors are supportive” (participant 19).
Discussion
This study assessed the acceptability of delivering a telephone barriers-based intervention via text messaging to underserved Black and Hispanic/Latinx women recommended for follow-up after an abnormal Pap test, and to describe their barriers and facilitators to attending follow-up appointments. We found that women reported the text message-based intervention to be acceptable with individual text messages rated as understandable, personally relevant, and culturally appropriate. The acceptability of message content and delivery methods is critical as interventions culturally tailored to women’s needs, values, beliefs, and perceptions lead to improvements in disease knowledge, clinical outcomes, satisfaction with care, and access outcomes [38]. Further, the amount of time that participants spent using their phones is consistent with research in similar populations [39, 40], suggesting that text messaging is appropriate for this population. Given their affordability, mobile phones appear to be an optimal channel for low income Black and Hispanic/Latinx women compared with non-Hispanic/Latinx Whites [40]. Thus, smartphones hold significant potential for improving health inequities in low-income communities of color.
Consistent with previous research with underserved Black and Hispanic/Latinx women [15], most participants reported cognitive and/or emotional barriers that made their follow-up care difficult. First, women in the study reported poor knowledge about cervical cancer, HPV, and colposcopy. Previous research has identified lack of knowledge and low perceived risk as a common barrier to attendance to follow-up appointment [10, 41]. Participants’ demographic characteristics (e.g., low educational attainment, unemployment) as well as health literacy are associated with knowledge-related barriers [15, 42, 43] and low rates of follow-up [10]. It is therefore important to address these knowledge gaps to increase follow-up attendance.
Second, patient follow-up is also influenced by beliefs and expectancies. Participants reported that while they believed the diagnostic colposcopy may be painful, they believed the follow-up will help maintain their health. Individuals who believe they have control over their health are more likely to engage in health-enhancing behaviors (e.g., adhering to follow-up after an abnormal Pap smear) and avoid health-compromising behaviors (e.g., skipping medical check-ups) [44]. Consequently, interventions should tailor messaging to normalizing expectancies about pain while positively impacting beliefs that the follow-up appointment will help women stay healthy with timely cervical cancer prevention or diagnosis.
Third, affect can moderate women’s adherence to follow-up recommendations. One barrier we identified is the fear associated with the colposcopy procedure and its results. The nature of gynecological procedures and possible implications for cervical cancer appears to evoke negative affect among women who receive an abnormal Pap test result [12, 45, 46], discouraging them from attending cervical cancer follow-up [12] or future screenings [47]. However, participants in the study also reported positive affect related to feeling relief after the colposcopy or receiving good test results. This positive affect is associated with motivation to repeat the Pap test in the future [47]. In fact, relief occurs when a motivationally incongruent situation is eliminated [48]. By removing the unpleasant situation, women may feel less scared of future results and be more likely to attend future medical visits. In addition to addressing negative affect, the linkage between relief and motivation should be considered when developing intervention content aimed at increasing completion of medical procedures.
Fourth, goals and values were also barriers or facilitators to follow-up. Women reported valuing their health and wanting to proactively manage any abnormal results they may receive. Additionally, religiosity was also found to be an important value among participants and can be a barrier or facilitator for follow-up after an abnormal Pap test depending on an individual’s beliefs. Positive religious coping (e.g., praying, relying on faith-based community) is associated with cancer screening adherence among Hispanic/Latinx women [49]. However, negative religious coping—such as perceptions that a cancer diagnosis is punishment for wrongdoings or sins—is associated with low rates of attending medical appointments [50]. Tailored interventions should consider messaging that integrates religious-based values—for women that identify these values—to encourage positive religious coping techniques and overcoming the negative effects of religious coping [51]. Faith-based networks are often a source of social support [52] and women who face greater social disadvantage and barriers to health care can be encouraged to rely on support from their religious networks [53].
Finally, coping skills are a self-regulation strategy frequently reported by patients, and the lack of such strategies is a barrier for women with lower educational attainment or who are unemployed [15]. Patients reported avoidance behaviors to reduce anxiety, which can undermine follow-up, leading to poor health behaviors [54, 55]. However, avoidance behaviors can be reversed if individuals are encouraged to employ adaptive coping strategies, e.g., by distracting themselves from the threatening scenario [11]. An additional self-regulation strategy reported by participants was seeking social support, which is associated with adherence to follow-up recommendations. Having supportive children, partners and friends can encourage women to attend regular medical appointments, recommended screenings and procedures, and to take care of themselves [56]. Interventions targeting follow-up should include social support messaging to increase skills, such as asking a trusted individual to come to their follow-up appointment with them or simply provide needed emotional support.
Study limitations include recruitment at only one academic safety-net hospital which may limit generalizability to other healthcare settings. Additionally, since this clinic population predominantly prefers English (only 6% of the Hispanic/Latinx patients prefer Spanish), text messages were not translated into Spanish. Therefore, we were unable to evaluate the acceptability of the text messages among Spanish speakers. Further research should fill this gap, adapting and evaluating the acceptability of the current intervention in Spanish. Moreover, the findings are limited to those who attended the recommended follow-up appointment and may limit our understanding of the text message acceptability, as well as specific barriers and facilitators, for those individuals who are currently not attending recommended appointments. While the data provide insight on the crafting of messages to assess and address barriers and facilitators, future research should also enroll non-adherers, which can be accomplished by contacting patients by phone after a missed follow-up appointment. Finally, the study was limited to identifying the acceptability of the text message content and the potential of using this modality, rather than exploring the feasibility of using text messages. Accordingly, this is the next phase of the adaptation of TC3 for text messaging and will provide the evaluation of text messaging feasibility among Black and Hispanic/Latinx women.
Overall, our study found that underserved Black and Hispanic/Latinx women find text messaging an appropriate delivery channel for tailored messaging to improve follow-up after an abnormal Pap test. Our study also identified barriers and facilitators to follow-up that support the current messaging content adapted from TC3, as well as identifying additional content that may be appropriate for certain patients (e.g., harnessing the positive aspects of religious coping or emphasizing the relief component of attendance). These findings will be informative for the next steps in evaluating the adaptation of TC3 into a text message-based intervention, as well as the development of other text message-based interventions targeting underserved Black and Hispanic/Latinx women in other medical contexts.
Funding Acknowledgements
The study was funded by the National Cancer Institute (R01CA104979, P30CA006927, P30CA072720, P30CA056036, and T32CA009035) and the National Center for Advancing Translational Sciences (UL1TR003017) at the National Institutes of Health.
Footnotes
Conflicts of Interest Statement
The authors declare no conflict of interest.
Code Availability
Not applicable
Ethics Approval
The study was approved by the Institutional Review Boards at Fox Chase Cancer Center and Temple University.
Consent to Participate
All participants completed the informed consent process including review of the documents with study staff and signing the informed consent and HIPAA forms.
Consent to Publish
Patients signed informed consent regarding publishing deidentified data
Availability of Data and Material
Data is available from the corresponding author upon reasonable request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Data is available from the corresponding author upon reasonable request.
