Publications

OBJECTIVES: A comprehensive decision aid (DA) for women ≥70 years with Stage I ER+/HER2-negative breast cancer was developed to support locoregional and systemic treatment decision-making. We aimed to test the acceptability of this novel DA in women newly-diagnosed with breast cancer.

MATERIALS AND METHODS: Women ≥70 diagnosed with Stage I, ER+/HER2- breast cancer were recruited from three Boston-area hospitals. They underwent baseline interviews after initial surgical consultation, reviewed the DA, and were surveyed <2 weeks later to determine DA acceptability (e.g., was it helpful?), changes in decisional conflict, stage of decision-making, and knowledge. Participants could optionally complete a three-month follow-up. Paired t-tests and McNemar's tests were used for statistical comparisons, and thematic analyses were conducted to identify themes in participants' open-ended comments.

RESULTS: Thirty-three of 56 eligible patients approached completed the baseline and acceptability surveys, and 25 completed the three-month follow-up. Participants' mean age was 74.7 years (±3.8). Nearly all participants (n = 31, 94%) strongly agreed that the DA was helpful and felt that the DA prepared them for treatment decision-making, with a mean decision preparation score of 4.1 (out of 5.0); 6% (n = 2) found it very anxiety provoking. Knowledge improved with a mean of 9.0 out of 14 questions correct at baseline to 10.6 correct on the acceptability survey (p < 0.0001).

CONCLUSIONS: A DA tailored to women ≥70 with Stage I, ER+, HER2- breast cancer increased knowledge and was perceived to be helpful by older women. A randomized controlled trial is needed to evaluate its efficacy.

BACKGROUND: Guidelines recommend that before being offered mammography screening, women age 75 years and older be informed of the uncertainty of benefit and potential for harm (e.g., being diagnosed with a breast cancer that would otherwise never have shown up in one's lifetime); however, few older women are informed of the risks of mammography screening and most overestimate its benefits.

OBJECTIVE: The aim of this study was to learn from women older than age 75 years who have predisposing risk factors for low health literacy (LHL) how they make decisions about mammography screening, whether an existing decision aid (DA) on mammography screening for them was acceptable and helpful, and suggestions for improving the DA.

METHODS: We conducted semi-structured interviews with 18 women who were between ages 75 and 89 years and had predisposing risk factors for LHL (i.e., answered somewhat to not at all confident to the health literacy screening question "How confident are you filling out medical forms by yourself?" and/or had an education level of some college or less).

KEY RESULTS: Findings indicate that women in this study lacked knowledge and understanding that one can decide on mammography screening based on their personal values. Women were enthusiastic about screening based on an interest in taking care of themselves but rely on their providers for health care decisions. Overall, most women found the DA helpful and would recommend the use of the DA.

CONCLUSIONS: Findings from this study provide formative data to test the efficacy of the modified DA in practice. Failing to consider the informational needs of adults with LHL in design of DAs could inadvertently exacerbate existing inequalities in health. It is essential that DAs consider older women's diverse backgrounds and educational levels to support their decision-making. [HLRP: Health Literacy Research and Practice. 2021;5(2):e78-e90.] Plain Language Summary: The goal of this research was to understand how women older than age 75 years with risk factors for low health literacy made decisions about getting mammograms, whether an educational pamphlet was helpful, and suggestions for improving it. This research helps in understanding how to involve this population in the process of designing patient-related materials for mammogram decision-making.

Background. When stakeholders offer divergent input, it can be unclear how to prioritize information for decision aids (DAs) on mammography screening. Objectives. This analysis triangulates perspectives (breast cancer screening experts, primary care providers [PCPs], and patients with limited health literacy [LHL]) to understand areas of divergent and convergent input across stakeholder groups in developing a breast cancer screening DA for younger women with LHL. Design. A modified online Delphi panel of 8 experts rated 57 statements for inclusion in a breast cancer screening DA over three rounds. Individual interviews with 25 patients with LHL and 20 PCPs from a large safety net hospital explored informational needs about mammography decision making. Codes from the qualitative interviews and open-ended responses from the Delphi process were mapped across stakeholders to ascertain areas where stakeholder preferences converged or diverged. Results. Four themes regarding informational needs were identified regarding 1) the benefits and harms of screening, 2) different screening modalities, 3) the experience of mammography, and 4) communication about breast cancer risk. Patients viewed pain as the primary harm, while PCPs and experts emphasized the harm of false positives. Patients, but not PCPs or experts, felt that information about the process of getting a mammogram was important. PCPs believed that mammography was the only evidence-based screening modality, while patients believed breast self-exam was also important for screening. All stakeholders described incorporating personal risk information as important. Limitations. As participants came from one hospital, perceptions may reflect local practices. The Delphi sample size was small. Conclusions. Patients, experts, and PCPs had divergent views on the most important information needed for screening decisions. More evidence is needed to guide integration of multiple stakeholder perspectives into the content of DAs.

OBJECTIVE: The evaluation of the effect of a mammography decision aid (DA) designed for older women at risk for lower health literacy (LHL) on their knowledge of mammography's benefits and harms and decisional conflict.

METHODS: Using a pretest-posttest design, women > 75 years at risk for LHL reviewing a mammography DA before and after their [B] primary care provider visit. Women were recruited from an academic medical center and community health centers and clinics.

RESULTS: Of 147 eligible women approached, 43 participated. Receipt of the DA significantly affected knowledge of mammography's benefits and harms [B] (pre-test (M = 3.75, SD = 1.05) to post-test (M = 4.42, SD = 1.19), p = .03). Receipt of the DA did not significantly affect decisional conflict (pre-test (M = 3.10, SD = .97) to post-test (M = 3.23, SD = 1.02), p = .71, higher scores = lower decisional conflict). The majority of the women (97%) indicated that the DA was helpful.

CONCLUSIONS: Women found a mammography screening DA helpful and its use was associated with these women having increased knowledge of mammography's benefits and harms.

PRACTICE IMPLICATIONS: With the shift toward shared decision-making for women > 75 years, there is a need to engage women of all literacy levels to participate in these decisions and have tools such as the one tested in this study.

OBJECTIVES: Breast cancer and heart failure (HF) are frequently interconnected due to shared risk factors and the cardiotoxicity of breast cancer treatment. However, the association between HF and hospital outcomes among breast cancer patients has not been studied. This study examined the association between HF and hospital outcomes among hospitalized patients with breast cancer.

METHODS: This cross-sectional study using the 2015-2018 Healthcare Cost and Utilization Project-National Inpatient Sample data included hospitalized women who were aged 18 years or older and had a primary diagnosis code for breast cancer. Logistic regression, negative binomial regression, and generalized linear models with log-link and gamma distribution were used to assess the associations of HF with in-hospital mortality, length of stay (LOS) and hospital costs.

RESULTS: Among 17,335 hospitalized patients with breast cancer, 4.2% (n = 1021) had HF. Compared to breast cancer patients without HF, those with HF were more likely to die during hospitalization (odds ratio = 1.65, 95% CI = 1.27-2.16, p < .001), stay in the hospital longer (incidence rate ratio = 1.22, 95% CI = 1.15-1.30, p < .001) and have higher hospital costs (cost ratio = 1.09, 95% CI = 1.03-1.14, p = .003) during hospitalization, controlling for covariates.

CONCLUSION: HF has a substantial negative impact on health outcomes among hospitalized breast cancer patients. Breast cancer and HF are often considered separate medical conditions, but promoting effective management of comorbid HF in breast cancer patients may help to improve hospital outcomes in this population.

BACKGROUND: To help inform screening decisions, a mammography screening decision aid (DA) for women aged 75 years and older was tested in a cluster randomized clinical trial of 546 women. DA use increased women's knowledge of the benefits and harms of mammography and lowered screening rates. In the current study, the objective was to examine whether participants' views of the DA and/or its effects differed by educational attainment.

METHODS: A secondary analysis was conducted of 283 women who received the DA before a personal care provider (PCP) visit during the trial to examine the acceptability of the DA and its effects on knowledge of the benefits and harms of mammography, screening intentions, and receipt of screening by educational attainment. Adjusted analyses accounted for clustering by PCP.

RESULTS: Of the 283 participants, 43% had a college education or less. Regardless of educational attainment, 87.2% found the DA helpful. Women with lower educational attainment were less likely to understand all of the DA's content (46.3% vs 67.5%; P < .001), had less knowledge of the benefits and harms of mammography (adjusted mean ± standard error knowledge score, 7.1 ± 0.3 vs 8.1 ± 0.3; P < .001), and were less likely to lower screening intentions (adjusted percentage, 11.4% vs 19.4%; P = .01). Receipt of screening did not differ by educational attainment.

CONCLUSIONS: A mammography DA for women aged 75 years and older was helpful to women regardless of their educational attainment; however, those with a college degree or greater understood the DA and, possibly as a result, lowered their screening intentions. Future studies need to examine how to better support informed decision making around mammography screening in older women with lower educational attainment.

LAY SUMMARY: The authors examined data from a previous study to learn the effects of a mammography decision aid (DA) for women aged 75 years and older according to their level of education. Overall, women found the DA helpful, but women with lower educational attainment found it harder to understand the benefits and harms of mammography screening and were less likely to lower their screening intentions than women with a college degree. The findings suggest that women aged 75 years and older who have lower educational attainment may need an even lower literacy DA and/or more support from health care professionals.

The last decades saw remarkable change in the way healthcare professionals generate and consume medical knowledge. Information management technologies have evolved considerably, yet medical publications continue to use a referencing system that has changed very little since the turn of the 20th century. Research suggests that up to one in five referenced claims quotes the original text inaccurately. Many authors, perhaps inadvertently, contribute to this process by citing non-primary data and amplifying the errors of their predecessors. Erroneous claims are propagated, accumulate into false belief systems and generate inaccurate knowledge. Updating the referencing system to provide additional information to support each referenced claim (eg, the location of the referenced statement in the original text and the nature of that text) could, perhaps, address this cycle of inaccuracy. We believe such changes in the referencing system would prompt authors to rigorously verify referenced claims and provide readers with context to inform a critical evaluation of the text. We detail our proposal for changes in the notations used for referencing, as well as in the information provided within reference lists. We also discuss some barriers and solutions to the adoption of our proposal.

BACKGROUND: Despite guidelines recommending not to continue cancer screening for adults > 75 years old, especially those with short life expectancy, primary care providers (PCPs) feel ill-prepared to discuss stopping screening with older adults.

OBJECTIVE: To develop scripts and strategies for PCPs to use to discuss stopping cancer screening with adults > 75.

DESIGN: Qualitative study using semi-structured interview guides to conduct individual interviews with adults > 75 years old and focus groups and/or individual interviews with PCPs.

PARTICIPANTS: Forty-five PCPs and 30 patients > 75 years old participated from six community or academic Boston-area primary care practices.

APPROACH: Participants were asked their thoughts on discussions around stopping cancer screening and to provide feedback on scripts that were iteratively revised for PCPs to use when discussing stopping mammography and colorectal cancer (CRC) screening.

RESULTS: Twenty-one (47%) of the 45 PCPs were community based. Nineteen (63%) of the 30 patients were female, and 13 (43%) were non-Hispanic white. PCPs reported using different approaches to discuss stopping cancer screening depending on the clinical scenario. PCPs noted it was easier to discuss stopping screening when the harms of screening clearly outweighed the benefits for a patient. In these cases, PCPs felt more comfortable being more directive. When the balance between the benefits and harms of screening was less clear, PCPs endorsed shared decision-making but found this approach more challenging because it was difficult to explain why to stop screening. While patients were generally enthusiastic about screening, they also reported not wanting to undergo tests of little value and said they would stop screening if their PCP recommended it. By the end of participant interviews, no further edits were recommended to the scripts.

CONCLUSIONS: To increase PCP comfort and capability to discuss stopping cancer screening with older adults, we developed scripts and strategies that PCPs may use for discussing stopping cancer screening.

IMPORTANCE: Guidelines recommend that women 75 years and older be informed of the benefits and harms of mammography before screening.

OBJECTIVE: To test the effects of receipt of a paper-based mammography screening decision aid (DA) for women 75 years and older on their screening decisions.

DESIGN, SETTING, AND PARTICIPANTS: A cluster randomized clinical trial with clinician as the unit of randomization. All analyses were completed on an intent-to-treat basis. The setting was 11 primary care practices in Massachusetts or North Carolina. Of 1247 eligible women reached, 546 aged 75 to 89 years without breast cancer or dementia who had a mammogram within 24 months but not within 6 months and saw 1 of 137 clinicians (herein referred to as PCPs) from November 3, 2014, to January 26, 2017, participated. A research assistant (RA) administered a previsit questionnaire on each participant's health, breast cancer risk factors, sociodemographic characteristics, and screening intentions. After the visit, the RA administered a postvisit questionnaire on screening intentions and knowledge.

INTERVENTIONS: Receipt of the DA (DA arm) or a home safety (HS) pamphlet (control arm) before a PCP visit.

MAIN OUTCOMES AND MEASURES: Participants were followed up for 18 months for receipt of mammography screening (primary outcome). To examine the effects of the DA, marginal logistic regression models were fit using generalized estimating equations to allow for clustering by PCP. Adjusted probabilities and risk differences were estimated to account for clustering by PCP.

RESULTS: Of 546 women in the study, 283 (51.8%) received the DA. Patients in each arm were well matched; their mean (SD) age was 79.8 (3.7) years, 428 (78.4%) were non-Hispanic white, 321 (of 543 [59.1%]) had completed college, and 192 (35.2%) had less than a 10-year life expectancy. After 18 months, 9.1% (95% CI, 1.2%-16.9%) fewer women in the DA arm than in the control arm had undergone mammography screening (51.3% vs 60.4%; adjusted risk ratio, 0.84; 95% CI, 0.75-0.95; P = .006). Women in the DA arm were more likely than those in the control arm to rate their screening intentions lower from previsit to postvisit (69 of 283 [adjusted %, 24.5%] vs 47 of 263 [adjusted %, 15.3%]), to be more knowledgeable about the benefits and harms of screening (86 [adjusted %, 25.5%] vs 32 [adjusted %, 11.7%]), and to have a documented discussion about mammography with their PCP (146 [adjusted %, 47.4%] vs 111 [adjusted %, 38.9%]). Almost all women in the DA arm (94.9%) would recommend the DA.

CONCLUSIONS AND RELEVANCE: Providing women 75 years and older with a mammography screening DA before a PCP visit helps them make more informed screening decisions and leads to fewer women choosing to be screened, suggesting that the DA may help reduce overscreening.

TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02198690.

BACKGROUND AND OBJECTIVES: Adults older than 75 years are overscreened for cancer, especially those with less than 10-year life expectancy. This study aimed to learn the effects of providing primary care providers (PCPs) with scripts for discussing stopping mammography and colorectal cancer (CRC) screening and with information on patient's 10-year life expectancy on their patients' intentions to be screened for these cancers.

RESEARCH DESIGN AND METHODS: Patient participants, identified via PCP appointment logs, completed a questionnaire pre- and postvisit. Primary care providers were given scripts for discussing stopping screening and information on patient's 10-year life expectancy before these visits. Primary care providers completed a questionnaire at the end of the study. Patients and PCPs were asked about discussing stopping cancer screening and patient life expectancy. Patient screening intentions (1-15 Likert scale; lower scores suggest lower intentions) were compared pre- and postvisit using the Wilcoxon signed-rank test.

RESULTS: Ninety patients older than 75 years (47% of eligible patients reached by phone) from 45 PCPs participated. Patient mean age was 80.0 years (SD = 2.9), 43 (48%) were female, and mean life expectancy was 9.7 years (SD = 2.4). Thirty-seven PCPs (12 community-based) completed a questionnaire. Primary care providers found the scripts helpful (32 [89%]) and thought they would use them frequently (29 [81%]). Primary care providers also found patient life expectancy information helpful (35 [97%]). However, only 8 PCPs (22%) reported feeling comfortable discussing patient life expectancy. Patients' intentions to undergo CRC screening (9.0 [SD = 5.3] to 6.5 [SD = 6.0], p < .0001) and mammography screening (12.9 [SD = 3.0] to 11.7 [SD = 4.9], p = .08) decreased from pre- to postvisit (significantly for CRC). Sixty-three percent of patients (54/86) were interested in discussing life expectancy with their PCP previsit and 56% (47/84) postvisit.

DISCUSSION AND IMPLICATIONS: PCPs found scripts for discussing stopping cancer screening and information on patient life expectancy helpful. Possibly, as a result, their patients older than 75 years had lower intentions of being screened for CRC.

CLINICAL TRIALS REGISTRATION NUMBER: NCT03480282.