Publications

2022

Schonberg, Mara A, Maria Karamourtopoulos, Adlin Pinheiro, Roger B Davis, Scot B Sternberg, Tejas S Mehta, Elizabeth A Gilliam, and Nadine M Tung. (2022) 2022. “Variation in Breast Cancer Risk Model Estimates Among Women in Their 40s Seen in Primary Care.”. Journal of Women’s Health (2002) 31 (4): 495-502. https://doi.org/10.1089/jwh.2021.0299.

Background: The Gail, Breast Cancer Surveillance Consortium (BCSC), and Tyrer-Cuzick breast cancer risk prediction models are recommended for use in primary care. Calculating breast cancer risk is particularly important for women in their 40s when deciding on mammography, with some guidelines recommending screening for those with 5-year risk similar to women age 50 (≥1.1%). Yet, little is known about risk estimate agreement among models for these women. Materials and Methods: Four hundred nine Boston-area women 40-49 years of age completed a risk questionnaire before a primary care visit to compute their breast cancer risk. The kappa statistic was used to examine when (1) Gail and BCSC agreed on 5-year risk ≥1.1%; (2) Gail estimated 5-year risk ≥1.7% and Tyrer-Cuzick estimated 10-year risk ≥5% (guideline thresholds for recommending prevention medications); and when (3) Gail and Tyrer-Cuzick agreed on lifetime risk ≥20% (threshold for breast MRI using Tyrer-Cuzick). Results: Participant mean age was 44.1 years, 56.7% were non-Hispanic white, and 7.8% had a first-degree relative with breast cancer. Of 266 with breast density information to estimate both Gail and BCSC, the models agreed on 5-year risk being ≥1.1% for 36 women, kappa = 0.34 (95% confidence interval: 0.23-0.45). Gail and Tyrer-Cuzick estimates led to agreement about prevention medications for 8 women, kappa 0.41 (0.20-0.61), and models agreed on lifetime risk ≥20% for 3 women, kappa 0.08 (-0.01 to 0.16). Conclusions: There is weak agreement on breast cancer risk estimates generated by risk models recommended for primary care. Using different models may lead to different clinical recommendations for women in their 40s.

Jindal, Shivani K, Maria Karamourtopoulos, Alicia R Jacobson, Adlin Pinheiro, Alexander K Smith, Mary Beth Hamel, and Mara A Schonberg. (2022) 2022. “Strategies for Discussing Long-Term Prognosis When Deciding on Cancer Screening for Adults over Age 75.”. Journal of the American Geriatrics Society 70 (6): 1734-44. https://doi.org/10.1111/jgs.17723.

BACKGROUND: Consideration of older adults' 10-year prognosis is necessary for high-quality cancer screening decisions. However, few primary care providers (PCPs) discuss long-term (10-year) prognosis with older adults.

METHODS: To learn PCPs' and older adults' perspectives on and to develop strategies for discussing long-term prognosis in the context of cancer screening decisions, we conducted qualitative individual interviews with adults 76-89 and focus groups or individual interviews with PCPs. We recruited participants from 4 community and 2 academic Boston-area practices and completed a thematic analysis of participant responses to open-ended questions on discussing long-term prognosis.

RESULTS: Forty-five PCPs (21 community-based) participated in 7 focus groups or 7 individual interviews. Thirty patients participated; 19 (63%) were female, 13 (43%) were non-Hispanic Black, and 13 (43%) were non-Hispanic white. Patients and PCPs had varying views on the utility of discussing long-term prognosis. "For some patients and for some families having this information is really helpful," (PCP participant). Some participants felt that prognostic information could be helpful for future planning, whereas others thought the information could be anxiety-provoking or of "no value" because death is unpredictable; still others were unsure about the value of these discussions. Patients often described thinking about their own prognosis. Yet, PCPs described feeling uncomfortable with these conversations. Patients recommended that discussion of long-term prognosis be anchored to clinical decisions, that information be provided on how this information may be useful, and that patient interest in prognosis be assessed before prognostic information is offered. PCPs recommended that scripts be brief. These recommendations were used to develop example scripts to guide these conversations.

CONCLUSIONS: We developed scripts and strategies for PCPs to introduce the topic of long-term prognosis with older adults and to provide numerical prognostic information to those interested. Future studies will need to test the effect of these strategies in practice.

Anderson, Timothy S, Edward R Marcantonio, Ellen P McCarthy, Long Ngo, Mara A Schonberg, and Shoshana J Herzig. (2022) 2022. “Association of Diagnosed Dementia With Post-Discharge Mortality and Readmission Among Hospitalized Medicare Beneficiaries.”. Journal of General Internal Medicine 37 (16): 4062-70. https://doi.org/10.1007/s11606-022-07549-7.

BACKGROUND: Patients with dementia are frequently hospitalized and may face barriers in post-discharge care.

OBJECTIVE: To determine whether patients with dementia have an increased risk of adverse outcomes following discharge.

DESIGN: Retrospective cohort study.

SUBJECTS: Medicare beneficiaries hospitalized in 2016.

MAIN MEASURES: Co-primary outcomes were mortality and readmission within 30 days of discharge. Multivariable logistic regression models were estimated to assess the risk of each outcome for patients with and without dementia accounting for demographics, comorbidities, frailty, hospitalization factors, and disposition.

KEY RESULTS: The cohort included 1,089,109 hospitalizations of which 211,698 (19.3%) were of patients with diagnosed dementia (median (IQR) age 83 (76-89); 61.5% female) and 886,411 were of patients without dementia (median (IQR) age 76 (79-83); 55.0% female). At 30 days following discharge, 5.7% of patients with dementia had died compared to 3.1% of patients without dementia (adjusted odds ratio (aOR) 1.21; 95% CI 1.17 to 1.24). At 30 days following discharge, 17.7% of patients with dementia had been readmitted compared to 13.1% of patients without dementia (aOR 1.02; CI 1.002 to 1.04). Dementia was associated with an increased odds of readmission among patients discharged to the community (aOR 1.07, CI 1.05 to 1.09) but a decreased odds of readmission among patients discharge to nursing facilities (aOR 0.93, CI 0.90 to 0.95). Patients with dementia who were discharged to the community were more likely to be readmitted than those discharged to nursing facilities (18.9% vs 16.0%), and, when readmitted, were more likely to die during the readmission (20.7% vs 4.4%).

CONCLUSIONS: Diagnosed dementia was associated with a substantially increased risk of mortality and a modestly increased risk of readmission within 30 days of discharge. Patients with dementia discharged to the community had particularly elevated risk of adverse outcomes indicating possible gaps in post-discharge services and caregiver support.

Bhatia, Roma, Elizabeth Gilliam, Gianna Aliberti, Adlin Pinheiro, Maria Karamourtopoulos, Roger B Davis, Laura DesRochers, and Mara A Schonberg. (2022) 2022. “Older Adults’ Perspectives on Primary Care Telemedicine During the COVID-19 Pandemic.”. Journal of the American Geriatrics Society 70 (12): 3480-92. https://doi.org/10.1111/jgs.18035.

BACKGROUND: Prior to the COVID-19 pandemic there were many barriers to telemedicine primary care for adults ≥65 years including insurance coverage restrictions and having lower digital access and literacy. With the pandemic, insurance coverage broadened and many older adults utilized telemedicine creating an opportunity to learn from their experiences to inform future policy.

METHODS: Between April 2020 and June 2021, we conducted a cross-sectional multimethod study of English-speaking, cognitively-intact, adults ≥65, who had a phone-only and/or video telemedicine visit with their primary care physician within one large Massachusetts health system (10 different practices) since March 2020. The study questionnaire asked participants their overall satisfaction with telemedicine (7-point scale) and to compare telemedicine with in-person care. We used linear regression to examine the association between participants' demographics, Charlson comorbidity score, and survey completion date with their satisfaction score. The questionnaire also included open-ended questions on perceptions of telemedicine; which were analyzed using qualitative methods.

RESULTS: Of 278 eligible patients reached, 208 completed the questionnaire; mean age was 74.4 years (±4.4), 61.5% were female, 91.4% were non-Hispanic White, 64.4% had ≥1 comorbidity, and 47.2% had a phone-only visit. Regardless of their age, participants reported being satisfied with telemedicine; median score was 6.0 on the 7-point scale (25th percentile = 5.0 and 75th percentile = 7.0). Non-Whites satisfaction scores were on average 1 point lower than those of non-Hispanic Whites (p = 0.02). Those with comorbidity reported scores that on average were 0.5 points lower than those without comorbidity (p = 0.07). Overall, 39.5% felt their telemedicine visit was worse than in-person care; 4.9% thought it was better. Participants appreciated telemedicine's convenience but described frustrating technical challenges. While participants preferred in-person care, most wanted telemedicine to remain available.

CONCLUSIONS: Adults ≥65 reported being satisfied with primary care telemedicine during the pandemic's first 14 months and wanted telemedicine to remain available.

2021

Park, Chanhyun, Sun-Kyeong Park, Jenica N Upshaw, and Mara A Schonberg. (2021) 2021. “In-Hospital Mortality, Length of Stay and Hospital Costs for Hospitalized Breast Cancer Patients With Comorbid Heart Failure in the USA.”. Current Medical Research and Opinion 37 (12): 2043-47. https://doi.org/10.1080/03007995.2021.1980775.

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.

Gunn, Christine M, Ariel Maschke, Michael K Paasche-Orlow, Ashley J Housten, Nancy R Kressin, Mara A Schonberg, and Tracy A Battaglia. (2021) 2021. “Using Mixed Methods With Multiple Stakeholders to Inform Development of a Breast Cancer Screening Decision Aid for Women With Limited Health Literacy.”. MDM Policy & Practice 6 (2): 23814683211033249. https://doi.org/10.1177/23814683211033249.

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.

Cadet, Tamara, Gianna Aliberti, Maria Karamourtopoulos, Alicia Jacobson, Morgan Siska, and Mara A Schonberg. (2021) 2021. “Modifying a Mammography Decision Aid for Older Adult Women With Risk Factors for Low Health Literacy.”. Health Literacy Research and Practice 5 (2): e78-e90. https://doi.org/10.3928/24748307-20210308-01.

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.

Pajka, Sarah E, Mohammad Adrian Hasdianda, Naomi George, Rebecca Sudore, Mara A Schonberg, Edward Bernstein, James A Tulsky, Susan D Block, and Kei Ouchi. (2021) 2021. “Feasibility of a Brief Intervention to Facilitate Advance Care Planning Conversations for Patients With Life-Limiting Illness in the Emergency Department.”. Journal of Palliative Medicine 24 (1): 31-39. https://doi.org/10.1089/jpm.2020.0067.

Background: Advance care planning (ACP) conversations are an important intervention to provide care consistent with patient goals near the end of life. The emergency department (ED) could serve as an important time and location for these conversations. Objectives: To determine the feasibility of an ED-based, brief negotiated interview (BNI) to stimulate ACP conversations among seriously ill older adults. Methods: We conducted a pre/postintervention study in the ED of an urban, tertiary care, academic medical center. From November 2017 to May 2019, we prospectively enrolled adults ≥65 years of age with serious illness. Trained clinicians conducted the intervention. We measured patients' ACP engagement at baseline and follow-up (3 ± 1 weeks) and reviewed electronic medical record documentation of ACP (e.g., medical order for life-sustaining treatment [MOLST]). Results: We enrolled 51 patients (mean age = 71; SD 12), 41% were female, and 51% of patients had metastatic cancer. Median duration of the intervention was 11.8 minutes; few (6%) of the interventions were interrupted. We completed follow-up for 61% of participants. Patients' self-reported ACP engagement increased from 3.0 to 3.7 out of 5 after the intervention (p < 0.01). Electronic documentation of health care proxy forms increased (75%-94%, n = 48) as did MOLST (0%-19%, n = 48) during the six months after the ED visit. Conclusion: A novel, ED-based, BNI intervention to stimulate ACP conversations for seriously ill older adults is feasible and may improve ACP engagement and documentation.

Minami, Christina A, Rachel A Freedman, Maria Karamourtopoulos, Adlin Pinheiro, Elizabeth Gilliam, Gianna Aliberti, Susan E Pories, et al. (2021) 2021. “Acceptability of a Patient Decision Aid for Women Aged 70 and Older With Stage I, Estrogen Receptor-Positive, HER2-Negative Breast Cancer.”. Journal of Geriatric Oncology 12 (5): 724-30. https://doi.org/10.1016/j.jgo.2021.02.028.

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.