Perceived barriers to cervical cancer screening and motivators for at-home human papillomavirus self-sampling during the COVID-19 pandemic: Results from a telephone survey

  1. Susan Parker  Is a corresponding author
  2. Ashish A Deshmukh
  3. Baojiang Chen
  4. David R Lairson
  5. Maria Daheri
  6. Sally W Vernon
  7. Jane R Montealegre
  1. Baylor College of Medicine, United States
  2. Medical University of South Carolina, United States
  3. UTHealth School of Public Health, United States
  4. Harris Health System, United States

Abstract

Background:

Home-based self-sampling for human papillomavirus (HPV) testing may be an alternative for women not attending clinic-based cervical cancer screening.

Methods:

We assessed barriers to care and motivators to use at-home HPV self-sampling kits during the COVID-19 pandemic as part of a randomized controlled trial evaluating kit effectiveness. Participants were women aged 30–65 and under-screened for cervical cancer in a safety-net healthcare system. We conducted telephone surveys in English/Spanish among a subgroup of trial participants, assessed differences between groups, and determined statistical significance at p<0.05.

Results:

Over half of 233 survey participants reported that clinic-based screening (Pap) is uncomfortable (67.8%), embarrassing (52.4%), and discomfort seeing male providers (63.1%). The last two factors were significantly more prevalent among Spanish vs English speakers (66.4% vs 30% (p=0.000) and 69.9 vs 52.2% (p=0.006), respectively). Most women who completed the kit found Pap more embarrassing (69.3%), stressful (55.6%), and less convenient (55.6%) than the kit. The first factor was more prevalent among Spanish vs English speakers (79.6% vs 53.38%, p=0.001) and among patients with elementary education or below.

Conclusions:

The COVID-19 pandemic influenced most (59.5%) to participate in the trial due to fear of COVID, difficulty making appointments, and ease of using kits. HPV self-sampling kits may reduce barriers among under-screened women in a safety-net system.

Funding:

This study is supported by a grant from the National Institute for Minority Health and Health Disparitie s (NIMHD, R01MD013715, PI: JR Montealegre).

Clinical trial number:

NCT03898167.

Editor's evaluation

The evidence presented in the manuscript is solid, and the study is a valuable contribution to research on at-home sampling for cervical cancer screening in underserved populations. The fact that the study was conducted during the COVID-19 pandemic makes it particularly informative for policymaking in circumstances of restricted access to care.

https://doi.org/10.7554/eLife.84664.sa0

Introduction

The disruptions in the US healthcare system due to the COVID-19 pandemic have resulted in a sharp decline in routine primary care, including cervical cancer screening (Czeisler et al., 2020). This is expected to lead to gaps in preventive care and increased risk of preventable chronic diseases (Wright et al., 2020; CDC, 2020), especially among medically underserved populations. Cervical cancer screening declined by 84% in April 2020 (DeGroff et al., 2021), a month after the declaration of the global COVID-19 pandemic, and the rates had not yet fully recovered by June 2021 (Mast et al., 2021). Before the COVID-19 pandemic, racial minorities and those with limited English proficiency were less likely to be screened for cervical cancer than their non-Hispanic white and English-proficient counterparts (Fuzzell et al., 2021), leading to disparities in cervical cancer incidence and mortality (National center for health statistics and National Health Interview Survey, 2019). These populations experiencing higher rates of cervical cancer and other chronic illnesses before the pandemic are now faced with widening health disparities due to COVID (Fisher-Borne et al., 2021).

Safety net health systems, which provide care regardless of the patient’s ability to pay, provide care for a large proportion of the medically underserved population in the US and have become increasingly important during the COVID-19 pandemic (Knudsen and Chokshi, 2021). The population served by safety net systems predominantly comprises low-income individuals, immigrants, and racial/ethnic minorities (America’s Health Care Safety Net, 2000). These populations are also disproportionately affected by COVID (Mullangi et al., 2020).

Barriers to cervical cancer screening among safety net system patients, both pre- and post–pandemic, have not been fully described, and thus research to inform targeted approaches to increase screening participation is needed. A previous study found that under-screened women within a safety net system were more likely to have limited knowledge of HPV and report cost, time, and lack of childcare as barriers to Pap screening compared to screened women (Ogunwale et al., 2016). In this context, alternative screening strategies such as home-based self-sampling for HPV testing may help circumvent many of these barriers. Additionally, other barriers introduced by the COVID-19 pandemic, such as such as limited availability of clinic appointments and fear of illness, are also addressed by home-based self-sampling, which may provide opportunities to continue to deliver preventive care during disruptions.

Self-sample HPV testing is effective at detecting high-risk HPV (Herrington, 2022) and has been used in multiple settings for cervical cancer screening (Nishimura et al., 2023; Gupta et al., 2018; Lim et al., 2017). Increased participation in screening varies across settings and by implementation strategies used, but a recent meta-analysis was associated with a nearly doubling of cervical cancer screening rates (Musa et al., 2017). Furthermore, self-sampling is highly acceptable by patients in multiple healthcare settings (Nelson et al., 2017). In the United States, the National Cancer Institute is currently conducting the ‘Last Mile’ initiative to provide data to support FDA approval of self-sampling (National Cancer Institute. Division of Cancer Prevention, 2022). If approved, self-sampling could be used in healthcare settings to address barriers to screening, particularly in safety net systems where screening coverage is generally low (Bauer et al., 2022). Thus it is imperative to understand current barriers to screening in safety net health systems, as well as motivators to use self-sample HPV testing.

Here, we describe perceived barriers to cervical cancer screening and motivators to use an at-home self-sampling kit for HPV testing among women in an urban safety net health system. The survey was conducted among a subset of participants from the PRESTIS trial, a pragmatic trial assessing the effectiveness of mailed self-sample HPV kits to improve cervical cancer screening among women in a safety net healthcare system (Montealegre et al., 2020). The trial was predominantly conducted during the period of COVID-19-related measures, thus providing unique data on barriers and motivators to self-sampling during the COVID-19 pandemic. Here, we describe how safety net patients were affected by COVID, their perceptions of how the COVID-19 pandemic affected their participation in the trial, as well as barriers to clinic-based screening and motivators to use the self-sampling kits.

Materials and methods

Participants

Study participants were part of a larger HPV self-sampling randomized clinical trial, the Prospective Evaluation of Self-Testing to Increase Screening (PRESTIS) study (Montealegre et al., 2020). The trial is being conducted in a large, urban safety net health system, Harris Health System, which is 54.1% Hispanic/Latino, 25.9% Black/African American, 11.3% non-Hispanic White, and 8.7% Asian or other (Harris Health System, 2021). The trial began in Febraury 2020, paused in March due to COVID-19-related closures, and resumed in August 2020 when COVID-19-related research restrictions were lifted. The trial’s protocol has been described in detail elsewhere (Montealegre et al., 2020). Briefly, patients are eligible for PRESTIS if they meet the following inclusion criteria: (1) 30–65 years of age; (2) no history of hysterectomy or cervical cancer; (3) under-screened for cervical cancer (no Pap test in the past 3.5 years or Pap/HPV co-test in the past 5.5 years); (4) at least two visits within the safety net healthcare system in the past 3.5 years; and (5) currently enrolled in a healthcare coverage or financial assistance plan accepted by the system (including Medicaid/Medicare, private insurance, and county-sponsored coverage). The latter two criteria were used to ensure that participants are current users of the healthcare system. Eligible patients were randomized to one of three study arms: Arm (1) Telephone recall (control) with a reminder to schedule a Pap test; Arm (2) Telephone recall with mailed self-sampling kit for HPV testing (intervention); and Arm (3) Telephone recall with mailed HPV self-sampling kit and an additional reminder/educational call from a health system employee (intervention plus). The self-sampling kits included an Aptima Multitest Swab collection kit to be returned to the health system for HPV testing.

As part of the trial, we conducted a nested survey to assess acceptability and experiences among a subset of randomly selected trial participants randomized to home-based self-sampling for HPV testing. This study includes telephone survey participants who responded between August 2020 and September 2022. Telephone survey participants were a random sample of women selected from each of four categories based on two factors: receipt of patient navigation (yes [Arm 3] or no [Arm 2]) and kit completed and returned within 6 months of randomization (yes or no). Women who require clinical follow-up were not eligible for this survey.

Data collection

Request a detailed protocol

The survey was administered by trained, bilingual researcher coordinators in the patient’s preferred language (English or Spanish). Participants were asked to provide verbal consent before commencing the survey and were sent a $20 gift card upon completion. This research was reviewed and approved by Baylor College of Medicine and Harris Health System’s Institutional Review Boards (H-44944).

Measures

Request a detailed protocol

The telephone survey was based on a questionnaire used in a previous study (Montealegre et al., 2015). Questions assess healthcare access and utilization (including specific questions about experiences during COVID-19-related closures and restrictions), barriers to cervical cancer screening, demographics, and telehealth access. Barriers to clinic-based screening were adapted from existing validated instruments (Nelson et al., 2017; Byrd et al., 2007; Byrd et al., 2004) and assessed using an 18-item scale, with items such as ‘I don’t have time to get a Pap test’ and ‘It’s difficult to get an appointment for a Pap test.’ Responses were on a three-point Likert scale (not at all, a little, very much) with an ‘unsure/cannot say’ option. Motivators were assessed by asking participants who reported using the kit to compare the convenience, stress/anxiety, and embarrassment of a Pap and the at-home self-sample kit by selecting whether the Pap at a clinic is more convenient/stressful/embarrassing, the self-sampling kit is more convenient/stressful/embarrassing, or the two screening methods are about the same. The motivators (convenience, stress, and embarrassment) of using the at-home kit vs clinic-based sampling were assessed with individual questions.

We assessed COVID-related experiences among all survey participants by asking whether the pandemic affected their economic situation, mental health, and physical well-being. Responses were on a 3-point Likert scale (large effect, small effect, no effect). To assess the influence of the COVID-19 pandemic, participants who reported using the kit were asked whether the COVID pandemic influenced their decision to participate in the trial. Those who indicated that the pandemic affected their decision were asked, ‘In what way did the COVID-19 pandemic affect your participation in this trial?’ After thoroughly reading the recorded responses, the responses were coded using a grounded theory approach (Glaser and Strauss, 1999). Codes were then categorized into emerging themes.

Analysis

Descriptive statistics were used to summarize the data. Chi-square or Fisher’s exact tests for independence were conducted to assess the relationship between survey question responses and demographics. Fisher’s exact test was used when more than 20% of cells had less than five participants, and chi-square was used for all other comparisons All statistical analyses were conducted using Stata IC 15.

Results

A total of 233 telephone surveys were completed by patients enrolled in the PRESTIS study between August 2020 and September 2022. Most surveys (61.4%) were conducted in Spanish, and most participants (69.5%) were Hispanic/Latino, with the largest proportion (39.5%) born in Mexico (Table 1). Over 95% of participants who responded to the income and education questions had a total household income of less than $50,000, and 45.6% had less than a high school education, respectively. Spanish-speaking participants had significantly lower education completion levels than English-speaking participants (p=0.000).

Table 1
Participant characteristics among a subgroup of PRESTIS trial participants randomized to receive a mailed self-sample kit for HPV testing who participated in a telephone survey between August 2020 and September 2022 (n=233).
Patient characteristicM (SEM)
Age (years)47.2 (0.62)
N (%)
30–39
40–49
50–59
60–65
59 (25.3%)
78 (33.5%)
69 (29.6%)
27 (11.6%)
N (%)
Language of InterviewEnglish90 (38.6%)
Spanish143 (61.4%)
Race/EthnicityHispanic162 (69.5%)
Black/African American51 (21.9%)
White14 (6.0%)
Asian3 (1.3%)
Other3 (1.3%)
Place of birthMexico92 (39.5%)
United States81 (34.8%)
Central America48 (20.6%)
South America4 (1.7%)
Asia2 (0.9%)
Europe3 (1.3%)
Other2 (0.9%)
Declined to answer1 (0.4%)
Total
(n=233)
English (n=90)Spanish
(n=143)
Education completed*No formal schooling4 (1.7%)0 (0%)4 (2.8%)
Some elementary15 (6.4%)0 (0%)15 (10.5%)
Elementary45 (19.3%)3 (3.3%)42 (29.4%)
Some high school41 (17.6%)13 (14.4%)28 (19.6%)
High school64 (27.5%)28 (31.1%)36 (25.2%)
Some college/vocational school33 (14.2%)21 (23.3%)12 (8.4%)
College/vocational school28 (12.0%)25 (27.8%)3 (2.1%)
Declined to answer3 (1.3%)0 (0%)3 (2.1%)
Household income<$10,00027 (11.6%)16 (17.8%)11 (7.7%)
$10,000 - $19,99947 (20.2%)21 (23.3%)26 (18.2%)
$20,000 - $29,99929 (12.4%)13 (14.4%)16 (11.2%)
$30,000 - $39,99919 (8.2%)8 (8.9%)11 (7.7%)
$40,000 - $49,9998 (3.4%)4 (4.4%)4 (2.8%)
>$50,0006 (2.6%)5 (5.6%)1 (0,7%)
Declined to answer97 (41.6%)23 (25.6%)74 (51.7%)
  1. *

    p=0,000 Comparison of English- vs Spanish-speaking participants.

Self-reported barriers

The most commonly reported barriers to cervical cancer screening were a Pap being uncomfortable (67.8%) and the patient being uncomfortable with a male provider (63.1%). More Spanish-speaking participants reported being uncomfortable with a male provider as a barrier (69.9%) (Table 2) compared to English-speaking participants (52.2%, p=0.006) and Hispanic women were also significantly more likely to report this barrier than Black and White women (67.3% vs 51.0% and 42.9%, respectively, p=0.034). A similar pattern was seen among women who reported that getting a Pap is embarrassing (52.4% overall). Significantly more Spanish-speaking and Hispanic participants said that getting a Pap test is embarrassing compared to English-speaking and non-Hispanic participants (66.4% of Spanish speakers vs 30% of English speakers, p=0.000; 61.7% of Hispanic women vs 25.5% of Black, and 42.9% of White women, p=0.000). Participants with lower education were more likely to report embarrassment as a barrier (56.3% of elementary or less, 59.1% of high school-, and 36.1% of college-educated participants, p=0.021). Most women reported that getting a Pap test was not expensive (68.5%), with significantly more Spanish- vsEnglish-speaking women saying that getting a Pap is expensive (25.4% vs 12.2% for English-speaking participants, p=0.024). Most women reported that getting a Pap is uncomfortable (67.8%), with a higher proportion of high school-educated participants reporting this barrier than elementary- or college-educated participants (76.2% vs 64.1% and 67.8%, respectively, p=0.031).

Table 2
Self-reported barriers among a subgroup of PRESTIS trial participants who were randomized to receive a mailed self-sample kit for HPV testing and completed a telephone survey from August 2020-September 2022 (n=233), Harris County, TX Source data file: ‘Table 2—source data 1’.
LanguageRace/Ethnicity
All (n=233) n (%)Spanish (n=143) n (%)English (n=90) n (%)p-valueHispanic (n=162) n (%)Black (n=51) n (%)White (n=14) n (%)Asian (n=3) n (%)Other (n=3) n (%)p-value
Getting a Pap is uncomfortable. Yes No Unsure158 (67.8%)
74 (31.8%)
1 (0.4%)
102 (71.3%)
41 (28.7%)
0 (0%)
56 (62.2%)
33 (36.7%)
1 (1.1%)
0.126112 (69.1%)
49 (30.3%)
1 (0.6%)
33 (64.7%)
18 (35.3%)
0 (0%)
8 (57.1%)
6 (42.9%)
0 (0%)
3 (100%)
0 (0%)
0 (0%)
2 (33.3%)
1 (66.7%)
0 (0%)
0.785
Uncomfortable with male provider Yes No Unsure147 (63.1%)
84 (36.1%)
2 (0.9%)
100 (69.9%)
41 (28.7%)
2 (1.4%)
47 (52.2%)
43 (47.8%)
0 (0%)
0.006109 (67.3%)
52 (32.1%)
1 (0.6%)
26 (51.0%)
25 (49.0%)
0 (0%)
6 (42.9%)
7 (50.0%)
1 (7.1%)
3 (100%)
0 (0%)
0 (0%)
3 (100%)
0 (0%)
0 (0%)
0.034
Getting a Pap is embarrassing Yes No Unsure122 (52.4%)
109 (46.8%)
2 (0.9%)
95 (66.4%)
48 (33.6%)
0 (0%)
27 (30%)
61 (67.8%)
2 (2.2%)
0.000100 (61.7%)
61 (37.7%)
1 (0.6%)
13 (25.5%)
37 (72.6%)
1 (2.0%)
6 (42.9%)
8 (57.1%)
0 (0%)
2 (66.7%)
0 (0%)
1 (33.3%)
1 (33.3%)
2 (66.7%)
0 (0%)
0.000
Getting a Pap test is expensive * Yes No Unsure47 (20.3%)
159 (68.5%)
26 (11.2%)
36 (25.6%)
94 (66.2%)
12 (8.5%)
11 (12.2%)
65 (72.2%)
14 (15.6%)
0.02439 (24.2%)
104 (64.6%)
18 (11.2%)
6 (11.8%)
38 (74.5%)
7 (13.7%)
0 (0%)
0 (0%)
14 (100%)
1 (66.7%)
2 (33.3%)
0 (0%)
1 (33.3%)
1 (33.3%)
1(33.3%)
0.049
AgeEducation
30–39 (n=59)40–49 (n=78)50–59 (n=69)60–65 (n=27)p-valueElementary or less (n=64)Some/all High school (n=105)Some/all College (n=61)p-value
40 (67.8%)
18 (30.5%)
1 (1.7%)
57 (73.1%)
21 (26.9%)
0 (0%)
40 (58.0%)
29 (42.0%)
0 (0%)
21 (77.8%)
6 (22.2%)
0 (0%)
0.16041 (64.1%)
23 (35.9%)
0 (0.0%)
80 (76.2%)
24 (22.9%)
1 (1.0%)
35 (67.8%)
26 (42.6%)
0 (0%)
0.031
36 (61.0%)
22 (37.3%)
1 (1.7%)
46 (59.0%)
32 (41.0%)
0 (0%)
46 (66.7%)
23 (33.3%)
0 (0%)
19 (70.4%)
7 (25.9%)
1 (3.7%)
0.35745 (70.3%)
18 (28.1%)
1 (1.6%)
66 (62.9%)
38 (36.2%)
1 (1.0%)
34 (55.7%)
27 (44.3%)
0 (0%)
0.298
29 (49.2%)
30 (50.9%)
0 (0%)
43 (55.1%)
34 (43.6%)
1 (1.3%)
31 (44.9%)
37 (53.6%)
1 (1.5%)
19 (70.4%)
8 (29.6%)
0 (0%)
0.25236 (56.3%)
28 (43.8%)
0 (0%)
62 (59.1%)
42 (40.0%)
1 (1.0%)
22 (36.1%)
38 (62.3%)
1 (1.6%)
0.021
15 (25.4%)
38 (64.4%)6 (10.2%)
12 (15.4%)
58 (74.4%)
8 (10.3%)
14 (203%)
46 (66.7%)
9 (13.0%)
6 (23.1%)
17 (65.4%)
3 (11.5%)
0.84217 (27.0%)
44 (69.8%)
2 (3.2%)
24 (22.9%)
65 (61.9%)
16 (15.2%)
6 (9.8%)
47 (77.1%)
8 (13.1%)
0.12
  1. *

    Missing n=1.

  2. Missing = 3.

Table 2—source data 1

Telephone survey results of barriers to getting provider-performed clinic-based screening among underscreened women participating in the PRESTIS study.

https://cdn.elifesciences.org/articles/84664/elife-84664-table2-data1-v2.zip

Motivators to participate in self-sample HPV testing

Over half of the 153 participants who reported returning the self-sampling kit (65.7% of respondents) found the self-sampling kit to be more convenient and less stressful compared to clinic-based cervical cancer screening (both 55.6%), with no significant differences between groups (Table 3). No patients found the self-sampling kit more embarrassing than the Pap test. While most participants found a Pap more embarrassing than the self-sampling kit (69.3%), significantly more Spanish- vs English-speaking participants found the Pap test more embarrassing than using a self-sampling kit (79.6% vs 53.3%, p=0.001). Participants with elementary or less education were more likely to report that a Pap was more embarrassing than high school- and college-educated participants (86.7% vs 65.2% and 55.0%, respectively, p=0.005).

Table 3
Motivators- Self-sampling vs Pap among participants who self-reported completing the at-home self-sampling kit for HPV testing during a telephone survey (n=153), August 2020-September 2022, Harris County, TX Source data file: ‘Table 3—source data 1’.
LanguageRace/Ethnicity
All (N=153) n (%)Spanish N=93 n (%)English N=60 n (%)p-valueHispanic (n=108) n (%)Black (n=33) n (%)White (n=7) n (%)Asian (n=2) n (%)Other (n=3) n (%)p-value
Convenience of Pap vs self-sampling Self-sampling more convenient Pap more convenient Both are about the same85 (55.6%)
18 (11.8%)
50 (32.7%)
48 (51.6%)
14 (15.1%)
31 (33.3%)
37 (61.7%)
19 (31.7%)
4 (6.7%)
0.23758 (53.7%)
14 (13.0%)
36 (33.3%)
19 (57.6%)
3 (9.1%)
11 (33.3%)
6 (85.7%)
0 (0%)
1 (14.3%)
1 (50.0%)
0 (0%)
1 (50%)
1 (33.3%)
1 (33.3%)
1 (33.3%)
0.756
Embarrassment of Pap vs self-sampling Self-sampling more embarrassing Pap more embarrassing Both are about the same0 (0%)
106 (69.3%)
47 (30.7%)
0 (0%)
74 (79.6%)
19 (20.4%)
0 (0%)
32 (53.3%)
28 (46.7%)
0.0010 (0%)
79 (73.2%)
29 (26.9%)
0 (0%)
18 (54.6%)
15 (45.5%)
0 (0%)
4 (57.1%)
3 (42.9%)
0 (0%)
2 (100%)
0 (0%)
0 (0%)
3 (100%)
0 (0%)
0.158
Stress/anxiety of Pap vs self-sampling Self-sampling more stressful Pap more stressful Both are about the same6 (3.9%)
85 (55.6%)
62 (40.5%)
4 (4.3%)
52 (55.9%)
37 (39.8%)
2 (3.3%)
33 (55%)
25 (41.7%)
0.9406 (5.6%)
60 (55.6%)
42 (38.9%)
0 (0%)
18 (54.6%)
15 (45.5%)
0 (0%)
4 (57.1%)
3 (42.9%)
0 (0%)
0 (0%)
2 (100%)
0 (0%)
3 (100%)
0 (0%)
0.479
AgeEducation**
30–39 (n=39)40–49 (n=52)50–59 (n=42)60–65 (n=20)p-valueElementary or less (n=45)Some/all High school (n=66)Some/all College (n=40)p-value
Convenience of Pap vs self-sampling Self-sampling more convenient Pap more convenient Both are about the same23 (59.0%)
1 (2.6%)
15 (38.5%)
29 (55.8%)
9 (17.3%)
14 (26.9%)
20 (47.6%)
8 (19.1%)
14 (33.3%)
13 (65.0%)
0 (0%)
7 (35.0%)
0.09522 (48.9%)
7 (15.6%)
16 (35.6%)
37 (56.1%)
7 (10.6%)
22 (33.3%)
24 (60.05)
4 (10.0%)
12 (30.0%)
0.841
Embarrassment of Pap vs self-sampling Self-sampling more embarrassing Pap more embarrassing Both are about the same0 (0%)
25 (64.1%)
14 (35.9%)
0 (0%)
38 (73.1%)
14 (26.9%)
0 (0%)
26 (61.9%)
16 (38.1%)
0 (0%)
17 (85.0%)
3 (15.0%)
0.2420 (0%)
39 (86.7%)6 (13.3%)
0 (0%)
43 (65.2%)
23 (34.9%)
0 (0%)
22 (55.0%)
18 (45.0%)
0.005
Stress/anxiety of Pap vs self-sampling Self-sampling more stressful Pap more stressful Both are about the same2 (5.1%)
23 (59.0%)
14 (35.9%)
1 (1.9%)
29 (55.8%)
22 (42.3%)
3 (7.1%)
19 (45.2%)
20 (47.6%)
0 (0%)
14 (70.0%)
6 (30.0%)
0.5290 (0%)
27 (60.0%)
18 (40.0%)
5 (7.6%)
36 (54.6%)
25 (37.9%)
1 (2.5%)
21 (52.5%)
18 (45.0%)
0.318
Table 3—source data 1

Telephone survey results showing motivators of self-sampling vs. Pap.

https://cdn.elifesciences.org/articles/84664/elife-84664-table3-data1-v2.zip

Among participants who reported returning the HPV self-sampling kit, over half (59.5%) reported that the COVID-19 pandemic influenced their decision to participate in the HPV self-sampling trial (Table 4). The most commonly reported reasons for why the pandemic influenced the patient’s decision to participate fell into three main categories: fear of getting COVID (41.3%), difficulty getting an appointment (21.7%), and having an easier time completing their screening at home (12%). Other reasons included not having time to travel, caring for children, and having a disability that made attending the clinic difficult. No significant differences in reported reasons were found between language groups.

Table 4
COVID-related barriers self-reported by PRESTIS trial participants who completed a telephone survey between August 2020 and September 2022, Harris County, TX Source data file: ‘Table 4—source data 1’.
COVID barriers for all patients (n=233)
LanguageRace/Ethnicity
All N=233 n (%)Spanish N=143 n (%)English N=90 n (%)p-valueHispanic (n=162) n (%)Black (n=51) n (%)White (n=14) n (%)Asian (n=3) n (%)Other (n=3) n (%)p-value
COVID-19 had economic effect Yes- large amount Yes- small amount No101 (43.4%) 82 (35.2%)
50 (21.5%)
60 (42%)
58 (40.6%) 25 (17.5%)
41 (45.6%) 24 (26.7%) 25 (17.5%)0.05268 (42.0%)
62 (38.35)
32 (19.8%)
24 (47.1%)
16 (31.4%)
11 (21.6%)
4 (28.6%)
4 (28.6%)
6 (42.9%)
3 (100%)
0 (0%)
0 (0%)
2 (66.6%)
0 (0%)
1 (33.3%)
0.280
COVID-19 affected mental health Yes- large amount Yes- small amount No34 (14.6%)
74 (31.8%) 125 (53.7%)
13 (9.1%)
41 (28.7%) 89 (62.2%)
21 (23.3%) 33 (36.7%) 36 (40%)0.00117 (10.5%) 50 (30.9%) 95 (58.6%)14 (27.5%)
19 (37.3%)
18 (35.3%)
2 (14.3%)
3 (21.4%)
9 (64.3%)
0 (0%)
1 (33.3%)
2 (66.7%)
1 (33.3%)
1 (33.3%)
1 (33.3%)
0.034
COVID-19 affected physical health Yes- large amount Yes- small amount No35 (15%)
57 (24.5%)
141 (60.5%)
20 (14%)
33 (23.1%) 90 (62.9%)
15 (16.7%) 24 (26.7%) 51 (56.7%)0.63320 (12.4%)
42 (25.9%)
100 (61.7%)
11 (25.6%)
12 (23.5%)
28 (54.9%)
3 (21.4%)
1 (7.1%)
10 (71.4%)
0 (0)%
1 (33.3%)
2 (66.7%)
1 (33.3%)
1 (33.3%)
1 (33.3%)
0.382
AgeEducation
30–39 (n=59)40–49 (n=78)50–59 (n=69)60–65 (n=27)p-valueElementary or Less (n=64)Some/all High School (n=105)Some/all College (n=40)p-value
COVID-19 had economic effect Yes- large amount Yes- small amount No19 (32.2%)
30 (50.9%)
10 (17.0%)
36 (46.2%) 29 (37.2%) 13 (16.7%)36 (52.2%) 16 (23.2%) 17 (24.6%)10 (37.0%)
7 (25.9%)
10 (37.0%)
0.01521 (32.8%)
28 (43.8%) 15 (23.4%)
48 (45.7%)
34 (32.4%)
23 (21.9%)
30 (49.2%)
19 (31.2%)
12 (19.7%)
0.364
COVID-19 affected mental health Yes- large amount Yes- small amount No7 (11.9%)
21 (35.6%)
31 (52.5%)
11 (14.1%) 23 (29.5%) 44 (56.4%)11 (15.9%) 23 (33.3%) 35 (50.7%)5 (18.5%)
7 (25.9%)
15 (55.6%)
0.9473 (4.7%)
24 (37.5%) 37 (57.8%)
23 (21.9%)
24 (22.9%)
58 (55.2%)
7 (11.5%)
25 (41.0%)
29 (47.5%)
0.006
COVID-19 affected physical health Yes- large amount Yes- small amount No7 (11.9%)
12 (20.3%)
40 (67.8%)
13 (16.7%) 19 (24.4%) 46 (59.0%)12 (17.4%) 20 (29.0%) 37 (53.6%)3 (11.1%)
6 (22.2%)
18 (66.7%)
0.7624 (6.3%)
19 (29.7%) 41 (64.1%)
23 (21.9%)
19 (18.1%)
63 (60.0%)
7 (11.5%)
18 (29.5%)
36 (59.0%)
0.033
COVID barriers among those who completed self-sample kit (n=153)*
LanguageAge
All (N=153) n (%)Spanish N=93 n (%)English N=60 n (%)p-value30–39 (n=39) n (%)40–49 (n=52) n (%)50–59 (n=69) n (%)60–65 (n=27) n (%)p-value
COVID-19 affected participation in HPV self-sampling trial Yes No Don’t know91 (59.5%)
61 (39.9%)
1 (0.7%)
58 (62.4%) 34 (36.6%) 1 (1.1%)33 (55%) 27 (45%)
0 (0%)
0.53032 (82.1%)
7 (18.0%)
0 (0%)
27 (51.9%)
25 (48.1%)
0 (0%)
22 (52.4%)
19 (45.3%)
1 (2.4%)
10 (50%)
10 (50%)
0 (0%)
0.010
Categories of COVID barriers reported by those who reported that COVID affected their participation in the trial (n=92)*
All N=92 n (%)Spanish N=59 n (%)English N=33 n (%)p-value
Way that COVID affected participation Fear of getting COVID Difficulties getting appointment Easier at home Other38 (41.3%)
20 (21.7%)
11 (12%)
23 (25%)
24 (40.7%) 16 (27.1%)
7 (11.9%) 12 (20.3%)
14 (42.4%) 4 (12.1%)
4 (12.1%) 11 (33.3%)
0.304
  1. *

    No significant differences were found with race/ethnicity or education.

  2. Missing n=3.

Table 4—source data 1

Telephone results showing COVID-related barriers self-reported by participants.

https://cdn.elifesciences.org/articles/84664/elife-84664-table4-data1-v2.zip

COVID-related barriers

Most participants who returned the kit (78.5%) reported that the COVID-19 pandemic affected their economic situation, 46.4% said it affected their mental health, and 39.2% said it affected their physical health (Table 4). Younger participants were more likely to report that the pandemic influenced their decision to participate (82.1% among 30–39, 51.9% among 40–49, 52.4% among 50–59, and 50% among 60 and older, p=0.010). Younger participants were also more likely to report that the pandemic had an economic effect on them than older participants (83.1% among 30–39, 83.4% among 40–49, 75.4% among 50–59, and 63% among 60 and older, p=0.015). More Spanish-speaking participants reported that COVID-19-related measures affected them economically (82.5%) compared to English-speaking participants (72.2%), though the results were not statistically significant (p=0.052). Conversely, significantly fewer Spanish-speaking participants reported that COVID-19 affected their mental health (37.8%) compared to English-speaking participants (60%, p=0.01). Participants with higher levels of education were more likely to report an effect on their mental health (42.2% among elementary or less, 44.8% among high school and 52.5% among college-educated participants, p=0.006). Most participants said the COVID-19 pandemic did not affect their physical health (60.5%), with participants with higher education levels more likely to report an effect on physical health (35.9% among elementary or less, 40% among high school and 41% among college-educated participants, p=0.033).

Discussion

In our assessment of barriers to clinic-based screening during the COVID-19 pandemic, we found that discomfort with the test and with male providers, as well as embarrassment, are important and prevalent barriers to screening among under-screened safety net health system patients. These barriers were more prevalent among Hispanic women and those who completed the survey in Spanish. Our results suggest that barriers experienced by under-screened women within a safety net healthcare system may differ from those experienced by patients in other healthcare systems who have difficulty accessing care due to financial reasons and other barriers (Fuzzell et al., 2021; Freeman, 2005; Akinlotan et al., 2017). Similar to other studies conducted in safety net healthcare systems, we found that additional barriers beyond the access and financial barriers, including modesty concerns and discomfort, hinder participation in cervical cancer screening (Fuzzell et al., 2021; Akinlotan et al., 2017). One study conducted in low-income settings, with differing patient demographics and not limited to under-screened women, showed that cost was the most commonly-reported barrier (53.1%), and that anxiety (38.7%), embarrassment (25.6%), the anticipation of pain (23.6%), and being seen by a male physician (19.7%) were less important (Akinlotan et al., 2017). While this analysis reported similar barriers to this study, we found that less than a quarter of respondents reported that screening was expensive, and over half reported embarrassment, anxiety, and being seen by a male provider were barriers. This indicates the need to evaluate barriers within each environment to implement strategic programs to increase screening.

The motivators for using an at-home HPV self-sampling kit appear to address key barriers to cervical cancer screening found in our survey participants. Most who used the kit found it to be less stressful, embarrassing, and more convenient than clinic-based screening. Significantly more Spanish-speaking women and women with lower education completion found the at-home kits to be less embarrassing than clinic-based screening, a barrier reported significantly more among those groups of participants. Our findings suggest that self-sampling kits may address or circumvent some of the key barriers reported by survey participants within a safety net health system, especially those reported by Spanish-speaking women, and may help to address disparities in cervical cancer screening adherence. Our findings are consistent with other studies in showing that self-sampling can address barriers to clinic-based screening in various countries and health system settings (Herrington, 2022), though ours appears to be the first to report results from US safety net health system under-screened women.

Our results show that COVID-19 was a motivating factor for most respondents to participate in the at-home self-sampling HPV trial and that many patients experienced additional barriers to care since the beginning of the pandemic. The most common barriers included difficulty making appointments, fear of getting COVID, and a broad response that screening was easier at home. While the survey did not probe about this last response, many participants mentioned it in the context of competing priorities amid the pandemic, such as childcare. These responses align with research indicating that the burden of childcare and elder care has fallen disproportionately on women during the pandemic (Byrd et al., 2007).

This study had certain limitations that should be considered when interpreting the results. Because the study was conducted among women in a safety net system that cares for un- and under-insured individuals, results may not be generalizable to women served by other types of health systems. Similarly, the main analysis, while relevant to the safety net system in which the study was conducted, may not apply to other healthcare systems, or to international audiences. Women in the community and other healthcare settings often face significant structural barriers related to access to care due to lack of insurance and/or cost. The prevalent barriers in our study most certainly reflect that financial and insurance barriers are largely removed due to participants’ enrollment in the health system. Additionally, as mentioned, the closed-ended survey format did not allow us to probe into some of the responses, particularly how the COVID-19 pandemic influenced the use of the kit. Nonetheless, this study is unique in that it gives in-depth insight into the particular barriers experienced by safety net patients during the COVID-19 pandemic. To our knowledge, this is the first analysis of cervical cancer screening barriers among under-screened women in a safety net healthcare system in the COVID-19 era.

In conclusion, mailed at-home HPV self-sampling kits present an opportunity to reduce important barriers to cervical cancer screening among women in a safety net healthcare system. Furthermore, during the COVID-19 pandemic, these barriers may have been exacerbated by the economic, physical, and mental effects of the pandemic. Further research is needed to understand additional barriers experienced by women during the COVID-19 pandemic and how these might be addressed with new screening tools such as at-home HPV testing using self-sampling. Implementation of new screening programs should address the specific barriers to clinic-based screening and motivators to self-sampling experienced by their patient populations.

Data availability

All data generated or analyzed during this study are included in the manuscript and supporting file. Source data files have been provided for Tables 1–4.

References

  1. Report
    1. America’s Health Care Safety Net
    (2000)
    Intact but Endangered
    Washington, DC: The National Academies Press.
    1. Byrd TL
    2. Chavez R
    3. Wilson KM
    (2007)
    Barriers and facilitators of cervical cancer screening among Hispanic women
    Ethnicity & Disease 17:129–134.
  2. Report
    1. Freeman H
    (2005)
    Excess cervical cancer mortality: a marker for low access to health care in poor communities: Rockville (MD)
    National Cancer Institute, Center to Reduce Cancer Health Disparities.
  3. Book
    1. Herrington CS
    (2022)
    IARC Handbooks Volume 18: Cervical Cancer Screening
    IARC Press.
  4. Report
    1. Mast C
    2. Munoz del Rio A
    3. Heist T
    (2021)
    Cancer screenings are still lagging
    Epic Health Research Network.

Decision letter

  1. Johannes Berkhof
    Reviewing Editor; Amsterdam UMC Location VUmc, Netherlands
  2. Eduardo L Franco
    Senior Editor; McGill University, Canada
  3. Matejka Rebolj
    Reviewer; King's College London, United Kingdom
  4. Paolo Giorgi Rossi
    Reviewer; Azienda Sanitaria Unità Locale di Reggio Emilia, Italy

In the interests of transparency, eLife publishes the most substantive revision requests and the accompanying author responses.

Decision letter after peer review:

Thank you for submitting your article "Perceived barriers to cervical cancer screening and motivators for at-home HPV self-sampling during the COVID-19 pandemic: A telephone survey of randomized controlled trial participants" for consideration by eLife. Your article has been reviewed by 4 peer reviewers, and the evaluation has been overseen by a Reviewing Editor and a Senior Editor. The following individuals involved in the review of your submission have agreed to reveal their identity: Matejka Rebolj (Reviewer #3); Paolo Giorgi Rossi (Reviewer #4).

As is customary in eLife, the reviewers have discussed their critiques with one another. What follows below is the Reviewing Editor's edited compilation of the essential and ancillary points provided by reviewers in their critiques and in their interaction post-review. Please submit a revised version that addresses these concerns directly. Although we expect that you will address these comments in your response letter, we also need to see the corresponding revision clearly marked in the text of the manuscript. Some of the reviewers' comments may seem to be simple queries or challenges that do not prompt revisions to the text. Please keep in mind, however, that readers may have the same perspective as the reviewers. Therefore, it is essential that you attempt to amend or expand the text to clarify the narrative accordingly.

Essential revisions:

1. The manuscript mainly focuses on differences between English-speaking and Spanish-speaking participants, presented in Tables 2 to 4, but comparisons by age, screening history, income, etc. may also be interesting (reviewers 1,3, and 4). Please include extra comparisons by age, income, etc., or convincingly argue why the focus is only on different language groups. For the additional analyses, a multivariable approach may be chosen in which different determinants are compared, as suggested by reviewer 1.

2. The manuscript contains many inaccuracies and inconsistencies. Most of them have been indicated by the reviewers. Please follow their suggestions as closely as possible. In addition, make sure that the table numbers match with the order in which they appear in the manuscript.

3. The reviewers had questions about missing items/data (reviewers 1 and 2) and inclusion/exclusion criteria (reviewers 3 and 4). Please make sure that the information is complete.

4. Table headings should provide more detailed information about the participants so that tables can be read without consulting the main text.

5. Do not use statements like p <.05, but give precise p-values, as noted by reviewer 2. Also, indicate in the Material and Methods section when Fisher's exact test is used and when the chi-square test is used.

6. The manuscript should provide a better overview of the existing literature. Many studies have investigated the attitude of underscreened women from high-income countries towards self-sampling, as noted by reviewer 3. Note that the recently published IARC Handbook on Cervical Cancer Screening (Volume 18) contains a lot of references to HPV self-sampling.

Reviewer #1 (Recommendations for the authors):

Susan L. Parker et al. interviewed 233 women (being a subgroup of the PRESTIS study) from a US safety-net system on their perceived barriers and motivators for at-home HPV self-sampling during the COVID-19 pandemic. Five patient characteristics were given of which language was used in a monovariate analysis to discriminate the results of (1) the self-reported barriers of getting a Pap smear, (2) motivators for self-sampling versus Pap, and (3) COVID-related barriers.

The differences observed in the barriers to having clinician-taken Pap smears between different health care systems will inform health professionals and policymakers to stake at the mutual, universal ones or act specifically on barriers for a particular group, hence creating a maximal impact on cervical cancer screening participation. In this study, Spanish-speaking women stressed the embarrassment of having a Pap (by a male provider, compared to the self-sample) more than their English-speaking counterparts within the same safety net system. The survey results on the motivators to use an HPV self-sampling kit confirm previous and worldwide experiences, putting self-sampling as a convenient intervention to address under-screened women, also in this particular setting. The COVID-pandemic impacted as well on the willingness to accept self-sampling as a valuable alternative.

Strengths:

The manuscript is written straightforwardly, and highly accessible to the general public, with a clear-cut introduction on the impact of COVID on primary care, focusing on cervical cancer screening in an under-served population. Results engage on the differences between Spanish- (2/3 of the subgroup) and English-speaking women (1/3) from the same safety net system, probably revealing cultural differences between them (although not discussed).

Weaknesses:

Authors have to be careful in their word choice, starting in the abstract and throughout the manuscript:

– Home-based HPV testing, might give the reader the impression that women not only took the sample themselves but also obtained the result of the test at the same time, as with a pregnancy test. This is not the case for HPV testing which is up-to-now always performed in a laboratory. Better to formulate as home-based self-sampling for HPV testing.

– Authors should provide absolute numbers (n/N) next to percentages of the perceived barriers/motivators, instead of using non-scientific scorings like 'over half' and 'most' (for percentages ranging from 52.4% up to 69.3%?). 'Most' implies almost all.

– Are there other options for women besides going to a clinic to obtain the classic Pap smear? If so, rather use 'clinician-based' screening or sampling instead of 'clinic-based'.

The total overview of the PRESTIS study and the subgroup being part of the telephone survey is only clear from the CONSORT Flow Diagram, but the specific participants focusing on in this manuscript should be described in detail to inform the reader of the magnitude and representativeness of the survey group. Even from the Flow Diagram, it is not clear which number of respondents returned the self-sampling kit (presumably 153) and which part did not (N=80?).

The methods section describes the questions used in the questionnaire, but items like 'telehealth access' cannot be found in the tables or Results section. Moreover, the self-sampling kit is not detailed (vaginal brush/urine sample/…? Which specific device? Which procedure?).

The patient characteristics (demographic data, SES) presented in Table 1 are very limited and specifically 'age' and 'screening history' are lacking (besides 'employment' and 'marital status'), which are important risk factors for studying cervical cancer screening. These data could however easily be obtained during the phone calls, or might even be available from the overall PRESTIS study. Please add if available. These variables would have been very important in bivariate or multivariate analysis to determine the variables associated with HPV self-sampling uptake and the barrier outcomes, to enrich the basic descriptive statistic presented here. Furthermore, the denominator of Table 1 is indicated to be 233, but some variables have missing data, which are not indicated in the table, nor discussed. Specifically, the variable 'household income', being a very important SES factor, was only reported for 136 women. Please report all missing data, and how this could have influenced the distribution shown.

Table 4 should be structured better to make clear to the reader that question 2 only relates to the positive answers in question 1. The denominator shown in the title of this table (N=153) only applies to the first question, the last 3 show data for all 233 interviewed women. Please adjust accordingly.

A more thorough discussion on the overlapping barriers reported in different healthcare systems and the specific deviating barriers – and the reasons why they deviate – in this specific patient group, would have been very informative.

Reviewer #1 (Recommendations for the authors):

Please find most recommendations in the public review, complete with:

(Abstract)

– … reported clinic(clinician)-based screening… discomfort seeing male providers.

Might be better formulated as: … is experiencing discomfort when seeing male providers.

– Do you 'complete' the kit or just 'use' it?

(Materials and methods)

– Can be clarified more.

– Leave the verbs away in the details on the inclusion criteria for the PRESTIS study.

(Results)

– Given results can be summarized and condensed, and should be enlarged with more in-depth analysis if the data are available.

– The percentage of the Mexico-born population should be corrected (39.4% in the text versus 39.7% in Table 1).

(Tables)

– Table 1: Give correct denominators for each variable.

– Table 2: give N for both Spanish- and English-speaking subgroups.

– Table 4: restructure and give the correct denominator for each question.

Reviewer #2 (Recommendations for the authors):

This manuscript provides important information on barriers to cervical cancer screening participation, and the potential of self-sampling kits to increase participation, especially among ethnic and/or linguistic minority women.

The manuscript is clearly and concisely written. The tables lack important information (esp. age of the participating women). P-values in the text are not given as precise values but whether they are below some cutoff; this is not recommended. The flow of the manuscript can be improved. One of the conclusions ("Furthermore, during the COVID-19 pandemic, these barriers were exacerbated by economic, physical, and mental effects of the pandemic") is not substantiated and could be rephrased.

The main conclusion in the Discussion "In conclusion, mailed at-home HPV self-sampling kits present an opportunity to reduce important barriers to cervical cancer screening among women in a safety net healthcare system" stands and is an important message to cervical cancer screening organizations – there is a lot to gain with self-sampling kits.

p1, Abstract, and p7 and p8 Results: It is recommended to provide precise P values rather than stating P<0.01 or P<0.05, for all P>0. 0.001.

p7, Results: "Significantly more Spanish-speaking participants reported that getting a Pap test is embarrassing compared to non-Hispanic and English-speaking participants, 66.4% vs. 30%, p<0.01" The comparison reported here is correct for "English speaking participants", but was not shown in the analysis for non-Hispanics.

p7, Results: The order of reporting percentages and associations in the 2nd paragraph of Results is different from the order of reporting in Table 2. It is recommended to stick to the same order in the Table and text.

p7, Results: be consistent in the number of decimals given for percentages; throughout the Results, one decimal is provided, but in the 5th line from the bottom no decimal is given in "78%".

p7-8, Results, third paragraph: please refer to the appropriate Table here (Table 4).

p8, Results, second paragraph: I'd suggest that the authors first report the number of participants returning the kit before they report analyses restricted to that group, e.g. "153 (xx%) of participants returned the kit."

Results: it is recommended to number the Tables in order of appearance. Now Table 3 is first mentioned after Table 4 is mentioned.

Tables: it is recommended to provide full Table titles, stating Person, Place, and Time, so that a Table can be more easily understood on its own.

Table 1: It appears some data are missing (e.g. for Place of birth, Education, Household income). State in the body of the table or in a footnote which number of records had missing values for each variable.

Table 1 does not list age; age is crucial for any epidemiological analysis. Please add.

Table 2: the order of categories seems somewhat contra-intuitive: with the variable "Uncomfortable with male provider" the first category given is Yes, and the second No. Reverse order?

Same for the other variables in this Table 2?

Tables 2 and 3 and 4: Please provide the N above each of the three columns.

Table 2: Were P values calculates based on Yes and NO categories only, or also including the Unsure categories?

It appears "Getting a Pap test is expensive" has a missing value. Please note this in the body of the table or footnote.

Table 3: Indicate here in the title who is in the analysis, so as to explain there are only 153 in this Table rather than the 233 participants.

Discussion, p14: "Furthermore, during the COVID-19 pandemic, these barriers were exacerbated by economic, physical, and mental effects of the pandemic". I am not sure this has been demonstrated by the analyses the authors report.

References: Please check the rendering of ref 17.

Reviewer #3 (Recommendations for the authors):

The authors investigated attitudes toward HPV self-sampling as an alternative screening method for under-screened women who live with multiple social disadvantages in an urban area of the USA. Although their study included elements that were specific to the era of the COVID pandemic during which the study was undertaken, it once more confirmed that HPV self-sampling may be an attractive alternative for a proportion of under-screened women. Whether the positive attitudes described in the study would translate into increased screening participation, remains to be seen.

The authors could provide some more information on how women can seek screening from this health care provider. Does this provider offer cervical cancer screening, and did Arm 1 of the trial (control) actually represent "usual care"? If care is provided regardless of an individual's ability to pay, then why did some women complain that paps are too expensive? Do women need to seek screening themselves, or will they be reminded that they are (over)due? Around 2/3 of the women reported that they are uncomfortable around a male screening provider – how likely is it that a woman will be screened by a male vs. a female provider, and can she choose between the smear-taker's gender?

A question to clarify some of the exclusion criteria: why did women need to have had at least 2 visits with this health care provider in the last 3.5 years? Would this not tend to increase the likelihood that the study would not reach severely underscreened and never-screened women (e.g., those that do not engage with health care but could be motivated to do self-sampling)?

Why was the main analysis looking at English vs. Spanish-speaking participants? It may make sense for policy-making within the specific healthcare provider, but less so for the international audience. Could the authors report some other comparisons e.g., by age or certain other sociodemographic characteristics or the women's screening history? Also, from the exclusion criteria it seems that some women may have been screened only by paps. Did the attitudes towards HPV self-sampling among those women differ from the attitudes among women who were previously screened with co-testing (and indeed from the attitudes among unscreened women, if there were any in the study)? (A simple frequency distribution for such characteristics added to Table 1 would also be helpful)

The authors concluded that self-sampling "may help to address disparities in cervical cancer screening adherence". This is an abstract statement but could be better supported by evidence from their study, for example by reporting how many of the women approached for the trial actually did self-sampling. We know that in theory self-sampling should be able to increase screening participation, but translation into practice has not been extremely successful. That is why statements like these would better not be made unless they can be supported with data.

This analysis of barriers to clinician collection and attitudes around self-sampling comes after more than a decade of intensive research and multiple systematic reviews. The paper should provide a better overview of the existing literature. Several studies have investigated attitudes towards self-sampling and self-sampling uptake in disadvantaged women from high-income countries, which would be consistent with the population in this study, so relevant for comparison.

Finally, the authors stated that their study is the first to describe barriers in obtaining cervical cancer screening during the COVID-19 pandemic (for a specific population). This may be correct, but for most people, whether one likes it or not, life has moved on a while ago. Could the authors find a way to make this paper more interesting (and informative) for a post-pandemic world?

Reviewer #4 (Recommendations for the authors):

The paper affords an interesting issue and the whole project, including the trial, will timely assess the effectiveness of self-sampling in reducing inequalities in cervical cancer access.

It is now time to start implementing self-sampling and try to exploit the potential benefits of this device in increasing HPV test coverage. To do that we need such research because implementation must be context specific. In fact, in this field context-specific, implementation research is needed and results observed in trials conducted in other countries or in different health systems cannot be transferred to a different situation. Furthermore, the acceptability of self-sampling depends on the social and cultural background of the women, but also on how it is offered by the provider and on how the communication between the provider and women occurs.

This study will integrate data from a survey and from a trial. In this paper, the authors report the results of the survey. It highlights that part of the barriers reducing access to screening of disadvantaged women can really be removed by self-sampling. The study shows that these barriers are now more important for Hispanic women. These findings are important, but more information from this survey can be exploited.

Methods

Data collection

I did not understand if all trial participants have been contacted for the interview. Furthermore, I did not understand if the consent was only to participate in the survey or in the trial (it would be a strong limitation to the trial including only those agreeing to participate, even if sometimes Ethics Committee or IRB imposes it).

I think it should be reported a description of the survey power or the sample size determination, whether it has been established on the basis of a formal sample size estimation or with a convenience constraint.

Measures

It is not clear if the different concepts (embarrassment, discomfort…) are measured in a single question or in separate items.

Results

It is important to report the response rate to the survey. It would be important also to report if the response was differential among those who returned the self-sample (or attended) and those who did not.

Why did the authors investigate only ethnicity as a possible determinant? Not the age, income, or education? Returning the kit or not? I think such analyses would be relevant to your objectives.

Discussion

It is balanced and well-written.

I suggest discussing the limitations in light of other results, not in a separate paragraph.

https://doi.org/10.7554/eLife.84664.sa1

Author response

Essential revisions:

1. The manuscript mainly focuses on differences between English-speaking and Spanish-speaking participants, presented in Tables 2 to 4, but comparisons by age, screening history, income, etc. may also be interesting (reviewers 1,3, and 4). Please include extra comparisons by age, income, etc., or convincingly argue why the focus is only on different language groups. For the additional analyses, a multivariable approach may be chosen in which different determinants are compared, as suggested by reviewer 1.

Thank you for this feedback. These additional comparisons will be made using the parent trial results (n=2,268), as well as an upcoming acceptability paper using the telephone survey results. We have stratified Table 1 to show significant differences in education level between the language groups (page 10). We have now also included additional analyses in Tables 2-4 that show barriers and motivators by race/ethnicity, age and education level. Income was not included in these tables because of the relatively large number of missing data for this variable.

2. The manuscript contains many inaccuracies and inconsistencies. Most of them have been indicated by the reviewers. Please follow their suggestions as closely as possible. In addition, make sure that the table numbers match with the order in which they appear in the manuscript.

Responses to individual reviewer comments and suggestions have been indicated below in blue and changes have been made within the manuscript to address each suggestion.

3. The reviewers had questions about missing items/data (reviewers 1 and 2) and inclusion/exclusion criteria (reviewers 3 and 4). Please make sure that the information is complete.

This has been addressed please see below.

4. Table headings should provide more detailed information about the participants so that tables can be read without consulting the main text.

This has been addressed in the updated manuscript file (pages 9-12).

5. Do not use statements like p <.05, but give precise p-values, as noted by reviewer 2. Also, indicate in the Material and Methods section when Fisher's exact test is used and when the chi-square test is used.

Exact p-values have been added (pages 1, 7-9) and a statement about the use of Fisher’s exact test has been added (page 6).

6. The manuscript should provide a better overview of the existing literature. Many studies have investigated the attitude of underscreened women from high-income countries towards self-sampling, as noted by reviewer 3. Note that the recently published IARC Handbook on Cervical Cancer Screening (Volume 18) contains a lot of references to HPV self-sampling.

Thank you for this suggestion. We have included a more thorough discussion of the literature on acceptability and attitudes toward self-sampling. These include citations from the IARC Handbook in the introduction, as well as additional literature from other global settings.

Reviewer #1 (Recommendations for the authors):

Susan L. Parker et al. interviewed 233 women (being a subgroup of the PRESTIS study) from a US safety-net system on their perceived barriers and motivators for at-home HPV self-sampling during the COVID-19 pandemic. Five patient characteristics were given of which language was used in a monovariate analysis to discriminate the results of (1) the self-reported barriers of getting a Pap smear, (2) motivators for self-sampling versus Pap, and (3) COVID-related barriers.

The differences observed in the barriers to having clinician-taken Pap smears between different health care systems will inform health professionals and policymakers to stake at the mutual, universal ones or act specifically on barriers for a particular group, hence creating a maximal impact on cervical cancer screening participation. In this study, Spanish-speaking women stressed the embarrassment of having a Pap (by a male provider, compared to the self-sample) more than their English-speaking counterparts within the same safety net system. The survey results on the motivators to use an HPV self-sampling kit confirm previous and worldwide experiences, putting self-sampling as a convenient intervention to address under-screened women, also in this particular setting. The COVID-pandemic impacted as well on the willingness to accept self-sampling as a valuable alternative.

Strengths:

The manuscript is written straightforwardly, and highly accessible to the general public, with a clear-cut introduction on the impact of COVID on primary care, focusing on cervical cancer screening in an under-served population. Results engage on the differences between Spanish- (2/3 of the subgroup) and English-speaking women (1/3) from the same safety net system, probably revealing cultural differences between them (although not discussed).

Weaknesses:

Authors have to be careful in their word choice, starting in the abstract and throughout the manuscript:

– Home-based HPV testing, might give the reader the impression that women not only took the sample themselves but also obtained the result of the test at the same time, as with a pregnancy test. This is not the case for HPV testing which is up-to-now always performed in a laboratory. Better to formulate as home-based self-sampling for HPV testing.

Thank you for pointing out the potentially misleading terminology. We have updated the terminology to “home-based self-sample HPV testing” or “HPV self-sampling” and do not refer to the procedure as “HPV testing” (pages 1, 3-4).

– Authors should provide absolute numbers (n/N) next to percentages of the perceived barriers/motivators, instead of using non-scientific scorings like 'over half' and 'most' (for percentages ranging from 52.4% up to 69.3%?). 'Most' implies almost all.

Thank you for this feedback. We have updated the results to include percentages and tempered the language so as to not overstate the percentages. Absolute numbers can be found in Tables 1-4.

– Are there other options for women besides going to a clinic to obtain the classic Pap smear? If so, rather use 'clinician-based' screening or sampling instead of 'clinic-based'.

In this study, women were only provided with the options of going to a clinic for a standard Pap/HPV co-test or receiving an at-home self-sampling kit for HPV testing. Thus, no changes were made to this terminology.

The total overview of the PRESTIS study and the subgroup being part of the telephone survey is only clear from the CONSORT Flow Diagram, but the specific participants focusing on in this manuscript should be described in detail to inform the reader of the magnitude and representativeness of the survey group. Even from the Flow Diagram, it is not clear which number of respondents returned the self-sampling kit (presumably 153) and which part did not (N=80?).

Thank you for this suggestion. We have made significant modifications in the Methods section to provide further details about the participants who participated in the survey and their representativeness of the larger sample of PRESTIS trial participants.

The methods section describes the questions used in the questionnaire, but items like 'telehealth access' cannot be found in the tables or Results section. Moreover, the self-sampling kit is not detailed (vaginal brush/urine sample/…? Which specific device? Which procedure?).

Thank you for noting this discrepancy between the Methods and Results sections. We have eliminate mention of telehealth access in the Methods section as this analysis did not include our results from the telehealth access portion of the telephone survey. We added information in the Methods about the self-sampling device and procedure. We also refer the reader to a published protocol of the parent trial (Montealegre JR, Anderson ML, Hilsenbeck SG, Chiao EY, Cantor SB, Parker SL, Daheri M, Bulsara S, Escobar B, Deshmukh AA, Jibaja-Weiss ML, Zare M, Scheurer ME. Mailed self-sample HPV testing kits to improve cervical cancer screening in a safety net health system: protocol for a hybrid effectiveness-implementation randomized controlled trial. Trials. 2020 Oct 21;21(1):872. doi: 10.1186/s13063-020-04790-5. PMID: 33087164; PMCID: PMC7580009.)

The patient characteristics (demographic data, SES) presented in Table 1 are very limited and specifically 'age' and 'screening history' are lacking (besides 'employment' and 'marital status'), which are important risk factors for studying cervical cancer screening. These data could however easily be obtained during the phone calls, or might even be available from the overall PRESTIS study. Please add if available. These variables would have been very important in bivariate or multivariate analysis to determine the variables associated with HPV self-sampling uptake and the barrier outcomes, to enrich the basic descriptive statistic presented here. Furthermore, the denominator of Table 1 is indicated to be 233, but some variables have missing data, which are not indicated in the table, nor discussed. Specifically, the variable 'household income', being a very important SES factor, was only reported for 136 women. Please report all missing data, and how this could have influenced the distribution shown.

Thank you for this suggestion. We have added age and screening history to Table 1 and agree that these are important variables for understanding the study population.. Table titles now reflect the populations and subgroups that were included in that table. Missing data are indicated as subscripts.

Table 4 should be structured better to make clear to the reader that question 2 only relates to the positive answers in question 1. The denominator shown in the title of this table (N=153) only applies to the first question, the last 3 show data for all 233 interviewed women. Please adjust accordingly.

Table 4 has been restructured to clearly show the N for each group or subgroup for which COVID barriers were assessed.

A more thorough discussion on the overlapping barriers reported in different healthcare systems and the specific deviating barriers – and the reasons why they deviate – in this specific patient group, would have been very informative.

Thank you for this suggestion. We have added to the conclusion and compared our findings with those from other healthcare systems, showing that the importance of certain barriers differs by population (page 15).

Reviewer #1 (Recommendations for the authors):

Please find most recommendations in the public review, complete with:

(Abstract)

– … reported clinic(clinician)-based screening… discomfort seeing male providers.

Might be better formulated as: … is experiencing discomfort when seeing male providers.

– Do you 'complete' the kit or just 'use' it?

For this analysis “complete” the kit means that the participant self-reported taking their sample and returning it to the health care system.

(Materials and methods)

– Can be clarified more.

We added more details here, including the type of swab included in the self-sampling kit. Additional details about the parent trial can be found in the referenced protocol paper (page 4).

– Leave the verbs away in the details on the inclusion criteria for the PRESTIS study.

This has been done (page 4).

(Results)

– Given results can be summarized and condensed, and should be enlarged with more in-depth analysis if the data are available.

Thank you for the suggestion. We have summarized and condensed the data reported and added in-depth analysis of additional demographic variables including age, race/ethnicity and education level.

– The percentage of the Mexico-born population should be corrected (39.4% in the text versus 39.7% in Table 1).

Thank you for catching this discrepancy.

(Tables)

– Table 1: Give correct denominators for each variable.

Each category has been updated to include any data missing (participant declined to answer) and percentages have been adjusted accordingly. The denominator for each category is now 233 (page 10).

– Table 2: give N for both Spanish- and English-speaking subgroups.

This has been done (page 11).

– Table 4: restructure and give the correct denominator for each question.

This has been done (page 12).

Reviewer #2 (Recommendations for the authors):

This manuscript provides important information on barriers to cervical cancer screening participation, and the potential of self-sampling kits to increase participation, especially among ethnic and/or linguistic minority women.

The manuscript is clearly and concisely written. The tables lack important information (esp. age of the participating women). P-values in the text are not given as precise values but whether they are below some cutoff; this is not recommended.

Age has been added to Table 1 and precise p-values have replaced the cutoffs (page 10).

The flow of the manuscript can be improved. One of the conclusions ("Furthermore, during the COVID-19 pandemic, these barriers were exacerbated by economic, physical, and mental effects of the pandemic") is not substantiated and could be rephrased.

This has been rephrased to …”these barriers may have been exacerbated…” (page 17). This statement is related to the data presented in Table 4 showing that over half of participants’ economic and mental health was affected by the pandemic and over a third of participants’ physical health was affected, potentially exacerbating existing barriers to cervical cancer screening.

The main conclusion in the Discussion "In conclusion, mailed at-home HPV self-sampling kits present an opportunity to reduce important barriers to cervical cancer screening among women in a safety net healthcare system" stands and is an important message to cervical cancer screening organizations – there is a lot to gain with self-sampling kits.

p1, Abstract, and p7 and p8 Results: It is recommended to provide precise P values rather than stating P<0.01 or P<0.05, for all P>0. 0.001.

This change has been made (pages 1, 7-8).

p7, Results: "Significantly more Spanish-speaking participants reported that getting a Pap test is embarrassing compared to non-Hispanic and English-speaking participants, 66.4% vs. 30%, p<0.01" The comparison reported here is correct for "English speaking participants", but was not shown in the analysis for non-Hispanics.

This correction has been made (page 7).

p7, Results: The order of reporting percentages and associations in the 2nd paragraph of Results is different from the order of reporting in Table 2. It is recommended to stick to the same order in the Table and text.

Table 2 has been reordered to reflect the order of Results reported in paragraph 2 (page 11).

p7, Results: be consistent in the number of decimals given for percentages; throughout the Results, one decimal is provided, but in the 5th line from the bottom no decimal is given in "78%".

This correction has been made (page 7).

p7-8, Results, third paragraph: please refer to the appropriate Table here (Table 4).

This correction has been made (pages 7-8).

p8, Results, second paragraph: I'd suggest that the authors first report the number of participants returning the kit before they report analyses restricted to that group, e.g. "153 (xx%) of participants returned the kit."

This correction has been made (page 8).

Results: it is recommended to number the Tables in order of appearance. Now Table 3 is first mentioned after Table 4 is mentioned.

This correction has been made by reordering the Results section.

Tables: it is recommended to provide full Table titles, stating Person, Place, and Time, so that a Table can be more easily understood on its own.

This change has been made.

Table 1: It appears some data are missing (e.g. for Place of birth, Education, Household income). State in the body of the table or in a footnote which number of records had missing values for each variable.

Thank you for this feedback- Table 1 now includes the number of participants who declined to provide their place of birth, education and household income. Percentages have been updated to reflect the prevalence of each with the total N (233) as the denominator (table 10)

Table 1 does not list age; age is crucial for any epidemiological analysis. Please add.

Age has been added to Table 1 (page 10).

Table 2: the order of categories seems somewhat contra-intuitive: with the variable "Uncomfortable with male provider" the first category given is Yes, and the second No. Reverse order?

Same for the other variables in this Table 2?

The current order reflects what we have seen in other publications, so this change was not made.

Tables 2 and 3 and 4: Please provide the N above each of the three columns.

This change has been made (pages 11-13).

Table 2: Were P values calculates based on Yes and NO categories only, or also including the Unsure categories?

Also including unsure categories.

It appears "Getting a Pap test is expensive" has a missing value. Please note this in the body of the table or footnote.

This change has been made (page 11).

Table 3: Indicate here in the title who is in the analysis, so as to explain there are only 153 in this Table rather than the 233 participants.

This change has been made (page 12).

Discussion, p14: "Furthermore, during the COVID-19 pandemic, these barriers were exacerbated by economic, physical, and mental effects of the pandemic". I am not sure this has been demonstrated by the analyses the authors report.

This has been rephrased to …”these barriers may have been exacerbated…” This statement is related to the data presented in Table 4 showing that over half of participants’ economic and mental health was affected by the pandemic and over a third of participants’ physical health was affected, potentially exacerbating existing barriers to cervical cancer screening (page 14).

References: Please check the rendering of ref 17.

Reference has been updated to reflect formatting of others (page 20).

Reviewer #3 (Recommendations for the authors):

The authors investigated attitudes toward HPV self-sampling as an alternative screening method for under-screened women who live with multiple social disadvantages in an urban area of the USA. Although their study included elements that were specific to the era of the COVID pandemic during which the study was undertaken, it once more confirmed that HPV self-sampling may be an attractive alternative for a proportion of under-screened women. Whether the positive attitudes described in the study would translate into increased screening participation, remains to be seen.

We appreciate these comments. We have added to the discussion to specify that trial results are needed to understand whether positive attitudes translate to increased screening participation.

The authors could provide some more information on how women can seek screening from this health care provider. Does this provider offer cervical cancer screening, and did Arm 1 of the trial (control) actually represent "usual care"? If care is provided regardless of an individual's ability to pay, then why did some women complain that paps are too expensive? Do women need to seek screening themselves, or will they be reminded that they are (over)due? Around 2/3 of the women reported that they are uncomfortable around a male screening provider – how likely is it that a woman will be screened by a male vs. a female provider, and can she choose between the smear-taker's gender?

Thank you for this suggestion. We have added information under Setting to describe usual care cervical cancer screening practices in our health system, as well as augmented usual care provided through the trial. We appreciate the potentially confusion around cost barriers and the safety net health system’s provision of care. We have provided additional information about payment for cervical cancer screening in the Participants subsection (page 5). If a woman is determined not to be financially eligible for free care (i.e., she may be determined by the health system to have a plan that requires co-payment or self-payment), out of pocket expenses can still be a burden and barrier to care. While they may have been enrolled in a coverage/financial assistance plan at the time of the survey, the plan may still incur costs.

A question to clarify some of the exclusion criteria: why did women need to have had at least 2 visits with this health care provider in the last 3.5 years? Would this not tend to increase the likelihood that the study would not reach severely underscreened and never-screened women (e.g., those that do not engage with health care but could be motivated to do self-sampling)?

Thank you for pointing out the need to explain the rationale for the 2 visits in the inclusion criteria. Because safety net systems are used to varying extent by population, we instituted eligibility and exclusion criteria to minimize the inclusion of women who use the health system only for emergency, inpatient, and specialty care but otherwise largely receive their primary care elsewhere (or nowhere). We explain in the Methods section that we limited inclusion to women who had visited a primary care clinic at least twice over the past five years and excluded women who had a documented primary care provider outside of the health system in order to capture patients who use the health system for their primary care.

Why was the main analysis looking at English vs. Spanish-speaking participants? It may make sense for policy-making within the specific healthcare provider, but less so for the international audience. Could the authors report some other comparisons e.g., by age or certain other sociodemographic characteristics or the women's screening history? Also, from the exclusion criteria it seems that some women may have been screened only by paps. Did the attitudes towards HPV self-sampling among those women differ from the attitudes among women who were previously screened with co-testing (and indeed from the attitudes among unscreened women, if there were any in the study)? (A simple frequency distribution for such characteristics added to Table 1 would also be helpful)

Thank you for this point. We have added a statement in the limitations paragraph that the main comparison may not be applicable to other health systems or for international audiences (page 16). However, this comparison is highly relevant to our population. Yes, some women were last screened with a Pap, and some with a co-test (the Health System recently switched to co-testing) but this was not included as an analysis since the clinical experience for both tests is nearly identical. Language is often used as a proxy for nativity, citizenship, immigration status and acculturation, so would be very relevant for policy makers during implementation planning for an HPV self-sampling program within the safety net healthcare system. We have added a statement to support this in the introduction. We have also added analyses to Tables 2-4 that include race/ethnicity, age and education level. We did not include income in these additional analyses because of the large number of missing data for this variable.

The authors concluded that self-sampling "may help to address disparities in cervical cancer screening adherence". This is an abstract statement but could be better supported by evidence from their study, for example by reporting how many of the women approached for the trial actually did self-sampling. We know that in theory self-sampling should be able to increase screening participation, but translation into practice has not been extremely successful. That is why statements like these would better not be made unless they can be supported with data.

We agree that this statement cannot be made based solely on the data from this study. We have modified the statement to specify that “If positive attitudes toward self-sampling translate into increased screening participation, self-sampling may help…….”

This analysis of barriers to clinician collection and attitudes around self-sampling comes after more than a decade of intensive research and multiple systematic reviews. The paper should provide a better overview of the existing literature. Several studies have investigated attitudes towards self-sampling and self-sampling uptake in disadvantaged women from high-income countries, which would be consistent with the population in this study, so relevant for comparison.

Thank you, we have added references and context to the Introduction section (page 2).

Finally, the authors stated that their study is the first to describe barriers in obtaining cervical cancer screening during the COVID-19 pandemic (for a specific population). This may be correct, but for most people, whether one likes it or not, life has moved on a while ago. Could the authors find a way to make this paper more interesting (and informative) for a post-pandemic world?

We explain that self-sampling is a potential method to circumvent barriers to cervical cancer screening apart from COVID-related barriers. We’ve added statements to the introduction elaborating on this point and distinguishing COVID-related barriers and barriers that existed pre-pandemic (page 2). However, it’s important to note that the data collected for this analysis was collected at various time points during the pandemic, and the implications of pandemic-related barriers cannot be separated from the data.

Reviewer #4 (Recommendations for the authors):

The paper affords an interesting issue and the whole project, including the trial, will timely assess the effectiveness of self-sampling in reducing inequalities in cervical cancer access.

It is now time to start implementing self-sampling and try to exploit the potential benefits of this device in increasing HPV test coverage. To do that we need such research because implementation must be context specific. In fact, in this field context-specific, implementation research is needed and results observed in trials conducted in other countries or in different health systems cannot be transferred to a different situation. Furthermore, the acceptability of self-sampling depends on the social and cultural background of the women, but also on how it is offered by the provider and on how the communication between the provider and women occurs.

This study will integrate data from a survey and from a trial. In this paper, the authors report the results of the survey. It highlights that part of the barriers reducing access to screening of disadvantaged women can really be removed by self-sampling. The study shows that these barriers are now more important for Hispanic women. These findings are important, but more information from this survey can be exploited.

Methods

Data collection

I did not understand if all trial participants have been contacted for the interview. Furthermore, I did not understand if the consent was only to participate in the survey or in the trial (it would be a strong limitation to the trial including only those agreeing to participate, even if sometimes Ethics Committee or IRB imposes it).

Thank you for indicating the potential for confusion. We have modified the methods section to clarify who participated in the telephone survey. As stated under Data Collection, “a subset of randomly selected trial participants randomized to home-based self-sample sampling for HPV testing.” In the protocol paper for the original trial, we report that “All eligible women are enrolled in the trial under a waiver of consent in order to reduce participation bias. A waiver of written documentation of informed consent was granted for participants’ use of the kits, due to the minimal risks involved and to enhance generalizability of the findings. A research information letter (described below) is used in lieu of a formal informed consent form.” Verbal consent was obtained for the telephone survey, conducted among a subset of trial participants. All consent procedures were reviewed and approved by Baylor College of Medicine and Harris Health System IRBs.

I think it should be reported a description of the survey power or the sample size determination, whether it has been established on the basis of a formal sample size estimation or with a convenience constraint.

Measures

It is not clear if the different concepts (embarrassment, discomfort…) are measured in a single question or in separate items.

These are measured in separate items on the survey, which is attached in the original submission. We’ve added a clarifying statement in materials/methods to indicate this (page 5).

Results

It is important to report the response rate to the survey. It would be important also to report if the response was differential among those who returned the self-sample (or attended) and those who did not.

The trial is ongoing, so we do not have access to actual kit return data. For the purposes of this analysis, we are relying on self-report of whether a kit was returned. Thus, we cannot assess the return rates of those trial participants who did not respond to, or declined to participate in the telephone survey.

Why did the authors investigate only ethnicity as a possible determinant? Not the age, income, or education? Returning the kit or not? I think such analyses would be relevant to your objectives.

We have added a column in Table 1 to show the breakdown of education and income by language and indicated where significant differences were found (page 10). We have added additional analyses to Tables 2-4 that include race/ethnicity, education and age. We did not include income due to the large number of missing data for this variable.

Discussion

It is balanced and well-written.

I suggest discussing the limitations in light of other results, not in a separate paragraph.

We’ve added comparisons to other results, and have kept general limitations in a separate paragraph.

https://doi.org/10.7554/eLife.84664.sa2

Article and author information

Author details

  1. Susan Parker

    Baylor College of Medicine, Houston, United States
    Contribution
    Conceptualization, Data curation, Formal analysis, Methodology, Writing – original draft, Project administration, Writing – review and editing
    For correspondence
    susan.parker2@bcm.edu
    Competing interests
    No competing interests declared
    ORCID icon "This ORCID iD identifies the author of this article:" 0000-0002-6722-4717
  2. Ashish A Deshmukh

    Medical University of South Carolina, Charleston, United States
    Contribution
    Conceptualization, Investigation, Writing – review and editing
    Competing interests
    No competing interests declared
  3. Baojiang Chen

    UTHealth School of Public Health, Houston, United States
    Contribution
    Supervision, Writing – review and editing
    Competing interests
    No competing interests declared
  4. David R Lairson

    UTHealth School of Public Health, Houston, United States
    Contribution
    Supervision, Writing – review and editing
    Competing interests
    No competing interests declared
  5. Maria Daheri

    Harris Health System, Houston, United States
    Contribution
    Project administration, Writing – review and editing
    Competing interests
    No competing interests declared
  6. Sally W Vernon

    UTHealth School of Public Health, Houston, United States
    Contribution
    Supervision, Writing – review and editing
    Competing interests
    No competing interests declared
  7. Jane R Montealegre

    Baylor College of Medicine, Houston, United States
    Contribution
    Conceptualization, Funding acquisition, Investigation, Methodology, Writing – review and editing
    Competing interests
    No competing interests declared

Funding

National Institute for Minority Health and Health Disparities (R01MD013715)

  • Jane R Montealegre

The funders had no role in study design, data collection and interpretation, or the decision to submit the work for publication.

Acknowledgements

The authors would like to thank Harris Health System for their partnership and support throughout the study. This study is supported by a grant from the National Institute for Minority Health and Health Disparities (NIMHD, R01MD013715, PI: JR Montealegre). The NIMHD was not involved in the study design; the collection, analysis, or interpretation of data; the writing of this manuscript; or the decision to submit the manuscript for publication. The REDCap software platform used for data capture is supported by a grant from the National Center for Supporting Translational Sciences (UL1 TR000445).

Ethics

Clinical trial registration NCT03898167.

Human subjects: The survey was administered by trained, bilingual researcher coordinators in the patient's preferred language (English or Spanish). Participants were asked to provide verbal consent before commencing the survey and were sent a $20 gift card upon completion. This research was reviewed and approved by Baylor College of Medicine and Harris Health System's Institutional Review Boards (IRBs) (protocol ID H-44944). A waiver of written documentation of informed consent was granted by the IRBs for participants in the parent study given the minimal risks involved and to minimize participation bias. An IRB-approved verbal consent script was read to participants randomized to participate in the telephone survey. After being read the script, patients were given the opportunity to ask questions, and verbally indicated whether they consented to participate in the telephone survey. A consent to publish was not obtained as only aggregate data will be reported.

Senior Editor

  1. Eduardo L Franco, McGill University, Canada

Reviewing Editor

  1. Johannes Berkhof, Amsterdam UMC Location VUmc, Netherlands

Reviewers

  1. Matejka Rebolj, King's College London, United Kingdom
  2. Paolo Giorgi Rossi, Azienda Sanitaria Unità Locale di Reggio Emilia, Italy

Version history

  1. Received: November 3, 2022
  2. Preprint posted: November 22, 2022 (view preprint)
  3. Accepted: May 25, 2023
  4. Accepted Manuscript published: May 26, 2023 (version 1)
  5. Version of Record published: July 11, 2023 (version 2)

Copyright

© 2023, Parker et al.

This article is distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use and redistribution provided that the original author and source are credited.

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  1. Susan Parker
  2. Ashish A Deshmukh
  3. Baojiang Chen
  4. David R Lairson
  5. Maria Daheri
  6. Sally W Vernon
  7. Jane R Montealegre
(2023)
Perceived barriers to cervical cancer screening and motivators for at-home human papillomavirus self-sampling during the COVID-19 pandemic: Results from a telephone survey
eLife 12:e84664.
https://doi.org/10.7554/eLife.84664

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https://doi.org/10.7554/eLife.84664

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