Women in their 40s responding to the 2024 United States Preventive Services Task Force mammography guideline update: a focus group study

Abstract

Objective

Focus groups involving US women aged 40–49 were conducted to identify women’s attitudes towards the 2024 United States Preventive Services Task Force (USPSTF) mammography guideline, particularly the change in emphasis away from informed choice. Focus groups explored what information women feel they need to receive about screening benefits and harms prior to getting a mammogram.

Design

Seven focus groups of 4–6 women were conducted 3–4 months following the USPSTF guideline announcement.

Setting

Participants were recruited from two healthcare systems in the USA and participated in focus groups via Zoom.

Participants

Women aged 40–49 with no history of breast cancer. Purposive sampling stratified by race, education and screening preferences.

Interventions

Participants had previously received a Decision Aid as part of a parent study informing them of the pre-2024 USPSTF guideline and mammography mortality benefit, false positives and overdiagnosis.

Main measures

Rapid qualitative analysis focused on summarising groups’ answers to questions posed to the focus groups.

Results

Groups were generally positive towards lowering the screening age to 40 but felt that screening frequency should be tailored to personal cancer risk. They strongly emphasised the importance of being informed about both the benefits and harms of mammography, despite the reduced emphasis on informed choice, and stressed a desire for transparency and autonomy.

Conclusions

US women were positive about the recommendation to screen at age 40 but wanted screening frequency to be tailored to their cancer risk. They valued being fully informed of both screening benefits and harms and expected that all women should be fully informed.

Trial registration number

NCT05838417

STRENGTHS AND LIMITATIONS OF THIS STUDY.

• Focus groups were conducted in the months immediately following the United States Preventive Services Task Force guideline change, making the issue salient and timely for participants.

• This study involved a cohort of women who had previously made informed decisions about when to have mammograms, making this cohort uniquely well-suited to evaluate the impact of the guideline change on informed screening decisions.

• This sample was diverse in terms of race, but not nationally representative.

• One focus group was comprised of participants with lower educational attainment, but the overall educational attainment of the sample was higher than the national average.

Introduction

The United States Preventive Services Task Force (USPSTF) is an influential guideline-producing organisation in the USA that makes recommendations about preventive healthcare. From 2009 to 2024, the USPSTF gave mammography screening for women aged 40–49 a Grade C recommendation, indicating that women should make an individualised decision with their doctor about when to begin having mammograms prior to age 50 (the USPSTF made a Grade B recommendation for women 50 and older, indicating biennial screening).¹ This recommendation was based on evidence indicating that mammography screening reduces breast cancer mortality but also has a high false positive rate that can trigger invasive biopsies, and can lead to overdiagnosis—the diagnosis of cancers that would not cause symptoms in a person’s lifetime—and resultant unnecessary cancer treatment.² The magnitude and importance of overdiagnosis continue to be the subject of active research and debate.^{3 4}

In 2024, the USPSTF changed its mammography guideline for women aged 40–49 to Grade B, recommending that all women have biennial mammograms starting at age 40.⁵ This change shifted the emphasis away from individualised decisions and towards a standard recommendation for all women. The purpose of the present research was to identify how women in their 40s felt about this new standard.

At the time the new guideline was announced, our team was conducting a longitudinal trial in which women aged 40–49 viewed a mammography screening Decision Aid (DA) and then had an annual well visit where most discussed having a mammogram with their clinician. Hence, these women were informed about the benefits and harms of mammography and had the opportunity to use that information to make an individualised screening plan with their doctor, per the USPSTF guideline at that time. Hence, these individuals could bring personal experience to bear on their evaluation of the guideline change. With this cohort, we first conducted a survey (reported elsewhere),⁶ which provided details about the guideline change and elicited initial evaluations of it. We next conducted focus groups to obtain a deeper understanding of these women’s perspectives on the guideline change, which are the focus of this article.

In addition to understanding women’s evaluation of the guideline change, these focus groups assessed the perceived importance of being informed of both the benefits and harms of screening, now that the guideline recommends screening for all at age 40. Many clinicians did not engage patients in discussions about screening benefits and harms even during the period when the USPSTF recommended individualised decisions.^7–10 Clinicians may feel they do not have time for such discussions, and some have voiced concern that informing women about the downsides of screening might cause harm by sowing confusion or deterring them from screening.¹¹ It is unclear whether women share these concerns. Past research has shown that women want to be informed about overdiagnosis and false positives,^12–14 but these attitudes might change in the context of a guideline that does not emphasise individualised decisions. It is possible that some women wish to not receive information that makes them feel confused and conflicted about a recommendation they plan to follow. People commonly avoid information in order to simplify decision-making and save time.^15–17 Hence, one goal of these focus groups was to understand whether it is acceptable to patients to not receive information about the benefits and harms of screening.

Methods

Parent trial and DA intervention

Participants were enrolled in a parent trial, which was a longitudinal cohort study examining informed breast cancer screening decision-making. The consent form was sent to each participant via email, read on the phone by a research assistant who provided an opportunity to ask questions and participants provided a digital signature. Inclusion criteria for that study were being female, aged 39–49 and having an upcoming annual well visit. Consent for this broader study included being possibly contacted for follow-up focus groups. Exclusion criteria were having a prior breast cancer diagnosis or a known BRCA1/2 gene mutation, because the DA was designed for women without these characteristics. In the parent trial, all participants read a DA that aimed to help women in their 40s make a decision about when to begin having mammograms.^{18 19} The DA provided information about the USPSTF and American Cancer Society screening guidelines, explanatory and quantitative information about breast cancer screening benefit (mortality reduction) and screening harms (false positives and overdiagnosis) based on data from the USPSTF 2016 review, and participants’ personal breast cancer risk estimate using the Gail model.^18–20

USPSTF guideline change and focus group sampling

The USPSTF released the guideline update in May 2024, after the parent trial had completed recruitment. All participants had received the DA at the time of the guideline update and were invited to take a new survey which provided information about the guideline using language from the USPSTF website. Out of 469 participants recruited into the parent trial, 313 participants (67%) responded to the survey. Thus, participants had been informed of the prior USPSTF guideline and evidence for screening benefits and harms, and had been additionally informed of the guideline change. From the 313 participants who responded to the survey, 266 expressed interest (via survey response) in being contacted for a focus group, and 39 were selected for the focus groups based on purposive sampling. Focus group size was 4–6 women, and purposive sampling aimed for at least 20% black women, and diverse distributions of educational attainment and screening preferences (ie, a previously documented preference to screen at their current age vs waiting until they are older or age 50). After conducting six focus groups, a seventh group was added to ensure women with lower educational attainment were represented (one participant in this group had completed trade school, and the rest completed high school only).

Focus group procedure

Focus groups were moderated by BM, with LDS attending to answer technical questions, and a research assistant notetaker. Focus groups were conducted on Zoom, recorded and transcribed. The focus group guide can be found in the online supplemental. A semi-structured interview guide was developed with input from the entire research team and leadership from BM who has extensive qualitative expertise. The guide reminded women of the old versus new USPSTF guideline using a PowerPoint slide visualisation. Initial questions elicited what participants remembered of the DA, then transitioned to open-ended questions about their evaluation of the new USPSTF guideline and whether it impacted their thinking about breast cancer screening. Next was a series of questions about the value of the information they had received about the benefits and harms of screening, reflections on whether there were any negative effects or downsides of learning that information; and what they thought was important for women to know about mammograms before they get screened, given this new guideline.

Patient and public involvement

Patients participated in feedback on the design of the DA provided in this study but were not involved in the design of the presently reported focus groups.

Qualitative paradigm and analysis

We took a pragmatic approach to this qualitative work.^{21 22} The nature of this inquiry was time-bound, and the ability to address our research question quickly due to the policy change was a major decision point. The Rapid Qualitative Analysis (RQA) approach balances rigour with time and resource constraints by using structure summary matrices.^{23 24} This method can deliver insights faster than a traditional qualitative approach.

Members of the research team brought different personal and professional positions to the study. The lead author is a woman for whom decisions about mammography screening are personally relevant and is trained as a psychologist with expertise in medical decision-making. The senior author is a man who does not share the same experience of mammography decision-making but has extensive expertise in qualitative methods and analysis. All study team members shared a belief that mammography screening plays a valuable role in healthcare. However, views on the USPSTF guideline change and on how much or little to weigh risks like false positives and overdiagnosis varied across team members. The research team recognised that their professional backgrounds and prior knowledge could influence data interpretation. To enhance analytic rigour, multiple coders independently reviewed the data, discrepancies were resolved through discussion and consensus, and interpretations were reviewed by the broader research team.

RQA used templates and matrices, and extracted participant discussions.^{23 24} The analysis strategy focused on summarising answers to questions posed to the focus groups, rather than extracting broader crosscutting themes. Three coders plotted key insights and quotations into templates, then summarised discussions by each question posed in the discussion guide. Consensus summaries were developed after each of the seven focus group templates was coded by two independent coders. These coders identified how their summaries overlapped or were divergent. Coders then discussed key salient data to create summaries for each question, leveraging direct quotations. LDS and BM refereed the consensus process at the template stage. Once summaries reached consensus, BM developed a synopsis by question in a matrix, which was then evaluated for accuracy and clarity by the study team.

Results

Seven focus groups were conducted between 6 August and 5 September 2024. Participant characteristics are displayed in table 1. Synopsis summaries are displayed in online supplemental table S1. 38 of the 39 participants had previously received a mammogram.

Table 1. Participant characteristics (N=39).

Age mean±SD	43.74±2.77
Race, n (%)
White or European American	20 (55)
Black or African American	16 (41)
Asian or Asian American	1 (3)
American Indian or Alaskan native	1 (3)
Other	1 (3)
Ethnicity, n (%)
Hispanic	2 (5)
Non-Hispanic	37 (95)
Educational attainment, n (%)
High school diploma or GED	6 (15)
Trade school	2 (5)
Some college, no degree	6 (15)
Bachelor’s degree (BS, BA, etc)	9 (23)
Master’s degree (MA, MPH, etc)	12 (31)
Doctoral/professional degree (PhD, MD, etc)	4 (10)
Annual income, n (%)
<$20 000	3 (8)
$20 000–29 999	4 (10)
$30 000–39 000	2 (5)
$40 000–49 999	3 (8)
$50 000–59 999	1 (3)
$60 000–74 999	7 (18)
$75 000–99 999	2 (5)
$100 000–149 999	8 (20)
$150 000+	5 (13)
Prefer not to say	4 (10)
Screening intentions, n (%)
I am going to start/continue having regular mammograms at my current age	30 (77)
I am going to wait until I’m older but before age 50 to have my first/next mammogram	6 (15)
I am going to wait until I’m 50 to start/continue having mammograms	0 (0)
Other	3 (8)

Screening preferences were assessed in a survey preceding these focus groups in which women were informed of the United States Preventive Services Task Force guideline change. This preference assessment question has been used in prior research.

BA, Bachelor of Arts; BSc, Bachelor of Science; GED, General Educational Development; MA, Master of Arts; MD, Doctor of Medicine; MPH, Master of Public Health; PhD, Doctor of Philosophy.

How did women react to the new USPSTF guideline?

Focus group discussions were generally positive toward lowering the recommended screening age to 40. They discussed how this seemed to be a proactive approach and made them feel “safer” and “more comfortable”, and expressed appreciation for the simplified guideline:

I think it is very clear, very easy to follow, definite timeframe spelled out for us. I think it’s great. (FG1)

However, discussions in multiple groups expressed mixed reactions about the recommendation for biennial screening. Notably, most women appeared to consider annual screening the norm. Some participants, particularly those with a family history of breast cancer, said they would not follow the guideline and would continue to screen annually. Others were more comfortable with biennial screening, especially if they did not have a family history. Some participants expressed “relief” at not having to screen annually:

One thing I would say is knowing myself, if I was six months late, I would probably say, well phew, because it’s not absolutely mandatory. (FG2)

I like it because I don't have a lot of time. I spend a lot of time with my kids and I'm a single parent, so my time is extremely valuable and don't have the energy to go to another doctor’s appointment. (FG6)

Another participant in Group 6 said she preferred biennial screening because the process of screening, particularly physical pain from the mammogram itself and anxiety from waiting for the result, were very stressful. After discussing differences in breast cancer risk and preferences for screening interval, many groups converged on the idea that screening interval should be personalised, based on factors such as cancer risk:

Yeah, I think that it should be up to the person if they want to go every year or every two years because of their family history. (FG6)

In the minority were participants in Groups 1, 3 and 4 who expressed concern that individualised decisions were now deemphasised:

I liked having between 40 and 49 being able to decide with my doctor what was best. (FG1)

[The new guideline] takes away from making your own decision with your provider. (FG3)

What was valuable about learning about the benefits and harms of screening?

Discussions emphasised the importance of learning about screening benefits, which was familiar information, and the importance of learning about false positives, overdiagnosis, and their personal cancer risk, which was new information:

I had no idea that false positives were a thing;

I wasn’t aware that there were cancers that aren’t harmful that could be treated;

I assumed that I was going to get breast cancer, but seeing my actual risk level was eye-opening. (Each quote represents a different participant from FG1)

Many group discussions emphasised the importance of being informed in general, and the importance of being informed of overdiagnosis and false positives, in particular. For example:

It was such a blessing to have access to the information through this study because it empowered me to have those conversations with people who are close to me. (FG1)

I wasn't really aware of the possibility of receiving a false positive or overdiagnosis. It wasn't even on my radar. So that was helpful to know that. (FG5)

Group 4 suggested that the information they received should be given to all women:

They should be handing out a pamphlet with [this information] when they talk about getting your mammogram. (FG4)

The specific benefits of being informed that were mentioned included enabling conversations with friends and family, helping to prepare questions for their doctor and clarifying the importance of screening. Moreover, many groups emphasised the importance of learning about false positives because they were previously unaware that call backs are common and do not necessarily mean they have cancer. They thought this knowledge could help with anxiety, for example,

I don't think most women are aware of how common a false positive may be … So I think it would be helpful to ease some of the anxiety that comes with it to know [about false positives]. (FG5)

When groups were asked what they learnt that was particularly important, all groups mentioned overdiagnosis and/or false positives (online supplemental table S1). However, there were also participants who said this information would not alter their screening plans:

I guess knowing those possibilities for me, it didn't really sway my interest in still pursuing imaging as well as whatever treatment might be presented. (FG4)

Notably, every group required clarification about the definition of overdiagnosis, either in reaction to this question or later in the discussion. Groups frequently used the words “false positive” and “overdiagnosis” interchangeably, despite appearing to differentiate the underlying concepts. Once these terms were clarified, no one changed their stance on the value of being informed about both. However, participants in Groups 6 and 7 expressed confusion about what to do with the information about overdiagnosis once it was clarified that overdiagnosis cannot be identified on an individual basis.

Were there downsides to being informed?

Participants were asked whether learning about the benefits and harms of screening had any downsides or negative effects on them, and if so, what were those effects. Two groups did not articulate any downsides to being informed. Primarily, groups reacted to the question by reiterating the importance of being informed.

However, some participants expressed that learning about false positives and overdiagnosis caused anxiety or gave them pause:

I had never heard of [overdiagnosis] before, so it did give me pause and I thought it was really helpful in understanding all the different options. It didn't prevent me from wanting to screen, but it definitely was eye-opening. (FG1)

I mean the false positives is a little nerve wracking to be like, oh, that could be a thing. (FG1)

… learning about [overdiagnosis], it was kind of scary. (FG2)

This question also elicited brief discussions about conflicting health messages causing confusion (FG4) and reinforcing preexisting distrust (FG5):

there’s conflicting information between what I'm hearing in this study and then what’s posted in a mammography office. I find that confusing, not helpful. (FG4)

I've lost even more trust is what I'm saying. So I would say it just validated some things and went a little negative for me to learn. (FG5)

What should women know before they get breast cancer screening, given the new USPSTF guideline?

All group discussions emphasised that women should receive information about both screening benefits and harms:

You should always be given [information about] the benefits vs harms of screenings. (FG3)

I agree that people should have information so that they're empowered and can be engaged in their healthcare decisions. (FG4)

I think they should know the risk and also the positives of it so they can decide for themselves. (FG7)

However, there were different perspectives between and within groups in how participants thought the benefits and harms should be emphasised. For example, some thought that women should be fully informed but also encouraged to screen:

I would say even though you [should] provide the information, you should still stress the importance of getting screened. (FG7)

Some participants from Group 1 suggested that messages could model drug advertisements, in which both benefits and harms are communicated but the harms are deemphasised. Another participant from this group suggested more matter-of-fact framing:

I think the messaging being more balanced takes a little bit of the hysteria and the fear away from it to say, here’s the guidelines: starting at 40. You should go every two years. Understand that risk factors are going to contribute to how likely it is for you to get breast cancer. And keep in mind that there could be these negative things that happen, which would be false positives or unnecessary treatment. However, the positive of catching breast cancer early outweighs the potential negative effects. (FG1)

Exploratory probe questions

Two probe questions further explored participants’ reactions to some of the potential barriers to providing full information to patients. One probe question asked the groups “what would you say to a clinician who is concerned that informing patients about both the benefits and harms of screening might cause confusion or delayed screening?” All groups reacted with a desire for transparency and autonomy:

I don't think just because there may be a few people who decline or delay having a mammogram, that it is therefore ethical to withhold that information from everyone. (FG2)

I don't feel like any of the doctors have the right to withhold any information at all when it comes to the patient’s health. I mean at the end of the day, it’s our decision whether or not we're going to get that test done or not get it done. (FG3)

Another probe question asked participants how they felt about screening uptake being a clinician performance metric, with the moderator clarifying that a doctor’s annual evaluation might be based, in part, on how many of their patients get a mammogram. Groups expressed a variety of negative reactions to this idea:

I think if I knew my doctor was being evaluated on that metric, I'd probably seek another doctor. (FG1)

I think if you start going down that line, it really does affect how much you can trust whatever it is that they're recommending. (FG4)

I feel it is wrong because at the end it is every woman’s choice to do a mammography and how often or when to do it based on family history. (FG6)

Group 7 was a bit more neutral; however, they expressed concern that such a metric could be unfair to doctors:

I kind of feel neutral because the doctor should be informing you and encouraging you to have a mammogram, but at the end of the day, it’s the woman’s choice, so that doesn't really fall back on the doctor. (FG7)

Groups 2, 4 and 6 each spontaneously proposed that an alternative, more appropriate metric would be to evaluate whether doctors adequately inform their patients:

So the things maybe you can evaluate the doctor on is if they inform the patient, how well informed they are, but not if they do the mammography itself. [Evaluate doctors] not on the numbers but on the quality of the information people get. (FG6)

Discussion

In 2024, the USPSTF changed its mammography screening guideline for women aged 40–49 from Grade C (making an individualised decision with a doctor about when to have mammograms) to Grade B indicating that all women should screen biennially starting at age 40. In these focus groups, informed women were asked how they felt about this change, and whether they thought it was still valuable to be informed about screening benefits and harms, considering this new guideline. Focus groups welcomed lowering the recommended screening age to 40. However, they also felt that screening frequency should be personalised. Individuals with a family history of breast cancer thought it was important to screen annually, whereas others, especially those without a family history, expressed relief at not having to screen annually. Currently, the USPSTF, American Cancer Society and National Comprehensive Cancer Network do not recommend risk-based screening plans, although the landmark WISDOM trial recently reported that such an approach could be safe to patients.²⁵

When considering what kinds of information was important to know about screening, women emphasised the importance of learning about mortality benefit, false positives, overdiagnosis and their personal cancer risk (estimated using the Gail model in the DA they all received). It was particularly important for participants to learn about the prevalence of false positives, because they had previously been unaware that false positives are common and that a call back does not necessarily mean they have cancer. Participants suggested that being informed about the high prevalence of false positives could help alleviate anxiety. However, research has contradicted this intuition; for example, one study showed that informing women of the high chance of false positives as one part of an intervention did not significantly reduce anxiety.²⁶

When presented with the concern that information about overdiagnosis and false positives might cause confusion or delayed screening, these women reacted by re-emphasising the importance of full disclosure of both the positives and negatives of screening. There was a notable expectation for autonomy to make decisions in collaboration with a clinician, even when considering the new guideline. These attitudes are consistent with the USPSTF’s broader stance on informed and shared decision-making.²⁷

There were also strikingly negative reactions to the idea that mammography screening uptake might be used as part of clinician performance evaluations. Participants expressed concern for their decision-making autonomy and concern that it would be unfair to doctors who cannot control what their patients choose to do. This discussion question was exploratory and indicates the need for further research on this issue.

There were some women who reacted to learning about false positives and overdiagnosis with anxiety, which is consistent with other recent findings.²⁸ However, none expressed that their anxiety was severe, and none said they wished they had not been given this information. A few women expressed that conflicting messages between the DA and the information they had received elsewhere (eg, at their doctor’s office) reduced their trust, a finding which is consistent with literature on the effect of conflicting health messages.^{29 30} These findings suggest both a need for consistency in screening messages across sources, and that screening messages should address the potential for the information to trigger anxiety.

Finally, these focus groups also provided insight about how screening messages might be framed, given the new guideline. While these groups expected to be fully informed, discussions revealed differences of opinion about how communications should emphasise benefits and harms. Groups tended towards the conclusion that women should be both fully informed and encouraged to screen.

Strengths and limitations

This study is the first (to our knowledge) to ask women to consider the value of being informed in the context of the new USPSTF guideline. It is unique in that it was conducted in the months immediately following the guideline change and with a cohort of women who had previously been encouraged to make individualised decisions about when to have mammograms, in accordance with the previous guideline. The fact that these participants were previously informed allowed them to assess the importance of that information in the context of a changed guideline landscape.

However, this study may have selected for more engaged individuals, as almost all these participants had previously had a mammogram and were engaged in a longitudinal study. It is possible that less engaged individuals would be even happier with the new, simplified guideline. These participants were diverse in terms of race, but the sample was recruited from two health systems and was not nationally representative. Group 7 was comprised of participants with lower educational attainment, but the educational attainment and income level of the sample as a whole was high and over 40% had postgraduate degrees.

Conclusions

These focus groups indicate that women appreciate being invited to screen at a younger age but want screening frequency to be personalised in consultation with their clinicians. Women want and expect to be informed about both the benefits and harms of screening, while still being encouraged to screen.

Data availability statement

Data are available upon reasonable request.