Older Women Survey Findings
Older women completing the patient survey were between the ages of 70 to 89 (mean 74.6). The majority of participants were Hispanic (71.1%), Spanish-speaking (73.1%), and 80.8% were born outside the US (61.5% Dominican Republic). In addition, 75% had less than a college degree with marginal (28.9%) or low health literacy (28.9%). Approximately 83% reported having three or more self-reported doctor diagnosed chronic conditions and only 26.9% perceived their health to be very good or excellent. Finally, 13.5% of older women reported a family history of breast cancer and 44.2% reported ever receiving a call back for additional diagnostic tests after a routine mammogram.
Table 2 provides a summary of key survey findings. Older women have been receiving mammograms, on average, for 30.7 years (SD 8.1) and in terms of mammography frequency, 63.5% think women should receive a mammogram once a year. In addition, 68.0% of older women perceived that getting a mammogram meant that they did not have to worry about breast cancer, 71.4% believed treatment would not be as bad, and 87.8% believed that their chances of dying from breast cancer would decrease by getting a mammogram. All but one older woman reported that they ‘agree’ or ‘strongly agree’ that having a mammogram will help find breast lumps early (98.0%). Despite 79.6% of older women reporting that they ‘rarely’ or ‘never’ worry about breast cancer, 87.2% of women ‘agree’ or ‘strongly agree’ that it is important to have an annual mammogram.
Over 80% of older women reported that their provider continues to recommend mammograms, and 86.5% indicated that they have not discussed stopping mammograms with any of their providers. Among those that did have a conversation with their provider to stop mammography screening (n=7), the majority were Hispanic (71.4%), foreign-born (71.4%), reporting fair to poor health (71.4%), and no history family history of breast cancer (100%). Only 11.8% of older women discussed stopping mammograms with family member and/or a friend. Further, nearly 80% reported receiving a letter, a phone call, or email in the last 12 months reminding them to make an appointment for a mammogram. More generally, when making decisions about their health, 89.4% of older women ‘agree’ that their provider decides when they should get screened for health problems, 80% consult at least one family member when making health decisions, and 38.4% consult a friend, neighbor, or caregiver.
Older Women Interview Findings
We conducted semi-structured interviews with a subset of older women who completed the survey to elicit their attitudes and beliefs towards mammography screening to provide depth and context to survey findings. There were no significant differences in sample characteristics between the interview or survey population (see Supplement). Interview findings are presented by key themes: 1) Older women intend to and are encouraged to receive an annual mammogram; 2) There are many opportunities for older women to obtain a mammogram; and 3) Older women are unaware of or have not experienced overuse.
Older women intend to and are encouraged to receive an annual mammogram.
We found that the majority of older women believed that getting a yearly mammogram was important to stay health and for detecting and treating breast cancer at an early stage. These beliefs were often shaped or encouraged by personal experiences with mammography screening (e.g., receiving a call to return for additional diagnostic tests), receiving a provider recommendation or reminder letter, and/or by knowing someone diagnosed with or dying from breast cancer. In turn, many women said that they intended on continuing mammograph screening. As a 71-year-old, Hispanic woman summarized:
“I’m very protective of my appointments and my specialists, because one never knows, by avoiding medical attention, when one can develop a problem that you wouldn’t even know about, or feel symptoms for, and it could be serious. So I’m very protective of my appointments, I get my mammogram every year.”
There are many opportunities to obtain a mammogram.
We asked older women to describe the process of how they came to get a mammogram. In most cases, women said that their provider would recommend and/or refer them to get a yearly mammogram. Several women also stated that they received a reminder letter or a phone call reminding them to get a yearly mammogram. This reminder would sometimes prompt them to call their provider’s office for a referral or call the mammography screening clinic directly to obtain an appointment. A few women also stated that the letters served as a personal reminder to discuss mammography screening with their providers at their yearly appointment. As a 72-year-old, Hispanic woman described:
“Well, my primary care doctor reminds me and they also send me the reminder, and if they don’t remind me, I see in the paper [letter] I have that it’s time to get it.[6.12.19 EN]”
Older women are unaware of or have not experienced overuse
We described the concept of overuse/unnecessary to gather information on older women’s understanding and opinions/views about healthcare overuse. We asked women if they ever heard of or experienced ‘unnecessary’ or ‘excessive healthcare’, herein referred to as overuse, and if they ever received excessive or unnecessary care. The majority of participants had not heard of or experienced healthcare overuse and many reinforced the importance and necessity of routine medical care, including mammograms, for detecting illness. As a 71-year-old, Hispanic older woman reported:
“I think the doctor tells you the care you need, at the moment you need it ... I don't think it's excessive, because, if you are going to have a mammogram, and the mammogram does not work out well, he’ll refer you to the professional”
We also asked women reasons for overuse more broadly and specific to mammography screening. The majority of women reiterated that all care is important but several report that providers may give care that is not necessary if it is covered by insurance. Older women also identified a number of other potential reasons for healthcare overuse including patient requests for unnecessary care, patient non-adherence, perceptions that more care is better, provider fear of missing a diagnosis, and healthcare system fragmentation. As one 78-year-old, Hispanic woman described:
“There are people who think that it’s [overuse/unnecessary or excessive care] to collect insurance, either insurance, or for the person, that’s the reason they do it. I think that maybe they [providers] also care about the patient, don't they?”
Provider Qualitative Interviews
We asked providers which guideline recommendations they followed when recommending for or against screening, how they discussed mammography screening with older patients, and about their perceptions around overscreening or overuse of mammography. We identified three major themes: 1) Challenges adhering to guideline recommendations for mammography screening among older women, 2) Lack of a standardized process or approach to mammography screening for older women, and 3) Provider-reported strategies to reduce mammography overuse.
Challenges adhering to guideline recommendations.
All providers stated that they followed the guideline recommendations for mammography screening released by their respective professional organizations, mainly the USPSTF and American College of OBGYN. However, providers discussed that providers within their own specialty and/or clinic did not always adhere to these guidelines. As one primary care provider described, “I’ve been here a long time I’ve learned that certain providers are very set in their ways and don’t want intervention.” In addition, providers (2 primary care and 1 OBGYN) described that other providers believe that the benefits of screening outweigh the potential harms of not screening. As one primary care provider reported:
“I kind of believe two physicians who basically screen annually until death…So if we have a pretty decent detection test and breast biopsy is a relatively benign procedure, not super morbid, why not just do it?”
Providers perceived that their colleague’s decision to continue screening indefinitely may be due to fear of malpractice, past experiences/changing guidelines, and to avoid confusion among older women. According to one primary care provider:
“ I mean god forbid you tried to convince them to be screened bi-yearly and then they have something on their mammogram and they didn’t get it yearly, like the hospital recommended. You know, like if that ever happened the doctor would be in a terrible position, even though that’s what the guidelines say.”
Lack of a standardized process or approach to mammography screening.
Providers stated that there is no within system consensus on how to approach screening within this age group. All providers stated that older women receive a letter from outside their clinic reminding older women to get an annual mammogram but it was unclear if the letter came from radiology or the mammography screening clinic. Primary care providers also described how this letter created conflict and confusion around which provider specialty is in charge of mammography screening and made it difficult for them to discuss stopping or reducing screening during an in-person appointment. As one primary care provider described:
“I think that this is a really difficult area because even though I feel pretty confident in the guidelines and the data that mammograms should be every two years, our patients get a letter reminding them that they should have their yearly mammogram. I think that that creates a lot of confusion.”
In addition, a few providers described how it is challenging to know which women are less likely to benefit from mammography screening and that they did not feel comfortable discussing the pertinence of limited life-expectancy for screening with their patients. As one OBGYN provider stated:
“That’s really a horrible message to give to people that, “Oh you’re going to die soon so you really don’t need that.” And so if women want to have the imaging then I think that they should and we don’t have the information on older people except to say when people get breast cancer when they’re older it usually grows a little bit slow.”
Several providers also reported that an in-person visit was not required for older women to obtain a referral for a mammogram and that older women could call the provider’s office and speak with a nurse who can generate an order or have the referral signed off by another provider who is unfamiliar with the patient’s history. As one primary care provider described:
“Now the annual mammogram [letter] that I learn tell people that they are overdue for their mammogram and my patients either will go around me to schedule which they can do or they will alternatively bring me the letters from radiology and say, “This says I’m overdue,” and that’s the whole of the conversation that fairly prompts me to say the same things that I’ve said.”
Finally, providers described how mammography overuse is not perceived to be a priority by system leadership, administrators, or other providers. Two providers said that mammography screening is seen as important for revenue generation at the system level. As one primary care provider described:
“…then this issue of screening every year, I think unless there’s institutional support for the doctors who want to screen every other year it’s really hard to be put in that position…it’s hard because there’s also a conflict of interest because it’s a moneymaker for Radiology.”
Provider-reported strategies to reduce mammography overuse.
We elicited ideas about potential de-implementation strategies by asking providers how providers and systems could better support older women in being adherent to mammography screening guidelines. Several providers stated that older women and providers could receive educational resources about the harms and limited benefits of mammography screening to help facilitate informed discussions around screening. A couple of providers also suggested utilizing the electronic health record to identify older women for whom reducing the frequency of or stopping mammography screening are recommended (e.g., women with <10-year life expectancy) and to customize system-generated reminder letters based on individual breast cancer risk and health status (i.e., family or personal history of breast cancer; comorbidities). Per two primary care providers:
“There’s a couple of pretty decent decisions aids out there for breast cancer screening…Having that integrated in to the EMR in a meaningful way that could be very useful.”
“I wonder if when you put in the order there was sort of a drop down or a view that you do a patients risk score or a drop-down screening tool…with guidelines that the hospital feels are the guidelines that we should follow.”
Finally, a couple of providers emphasized the need for a workgroup comprised of key stakeholders (e.g., primary care providers, OBGYN, radiology, system leadership, administrators) to educate about the harms of mammography overuse; additionally, they could develop a standard process of care around mammography screening that delineates providers roles in the referral process and supports a single set of guidelines, to help reduce variation in screening practices and provider recommendations regarding mammography. As one primary care provider summarizes:
“what needs to be done in coordination with really a population health perspective on what our given practices are doing about screening more broadly as opposed to us being alone. That will require someone in a leadership level wanting to think about the re-organizing screening tests in some sort of way and think about resources and is there any quality metrics, is there any incentive, how the incentives aligned for that type of a process. So I think that process involves other practices then it makes sense that radiology would be included in that conversation so that we can align similar policies if that was possible.”
Multi-level Factors and Potential De-Implementation Strategies for Mammography Overuse
In Table 3, we combined and triangulated quantitative and qualitative data from all sources and organized data according to Norton & Chambers framework2 to identify factors at the patient, provider, and system-level contributing to mammography overuse. We also grouped and matched potential de-implementation strategies proposed in provider interviews by level of influence. For example, analysis of all data sources suggested that older women are unaware of the potential harms of overuse and have strong intentions to continue mammography. A primary care provider recommended implementing a decision aid to educate women about the potential harms of screening and recommended that the decision aid be integrated into the electronic health record to help facilitate discussions.
It is important to note that some of the de-implementation strategies identified by providers span multiple levels, such as education about the harms of overscreening (patient and provider) and integrating educational/training tools into the electronic health record (provider and systems). Moreover, many of the factors contributing to overuse at one level were reinforced or facilitated by factors identified at another level. For instance, system-generated reminder letters reinforced older women’s beliefs and mammography screening behavior and also created challenges for providers discussing the option to reduce or stop screening with their patients.