Older adults' perspectives on primary care telemedicine during the COVID-19 pandemic.

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.

Strategies for discussing long-term prognosis when deciding on cancer screening for adults over age 75.

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.

Primary Care Providers' Perceptions of the Acceptability, Appropriateness, and Feasibility of a Mammography Decision Aid for Women Aged 75 and Older.

Background. Clinicians need to find decision aids (DAs) useful for their successful implementation. Therefore, we aimed to conduct an exploratory study to learn primary care clinicians' (PCPs) perspectives on a mammography DA for women ≥75 to inform its implementation. Methods. We sent a cross-sectional survey to 135 PCPs whose patients had participated in a randomized trial of the DA. These PCPs practiced at 1 of 11 practices in Massachusetts or North Carolina. PCPs were asked closed-ended and open-ended questions on shared decision making (SDM) around mammography with women ≥75 and on the DA's acceptability, appropriateness, and feasibility. Results. Eighty PCPs participated (24 [30%] from North Carolina). Most (n = 69, 86%) thought that SDM about mammography with women ≥75 was extremely/very important and that they engaged women ≥75 in SDM around mammography frequently/always (n = 49, 61%). Regarding DA acceptability, 60% felt the DA was too long. Regarding appropriateness, 70 (89%) thought it was somewhat/very helpful and that it would help patients make more informed decisions; 55 (70%) would recommend it. Few (n = 6, 8%) felt they had other resources to support this decision. Regarding feasibility, 53 (n = 67%) thought it would be most feasible for patients to receive the DA before a visit from medical assistants rather than during or after a visit or from health educators. Most (n = 62, 78%) wanted some training to use the DA. Limitations. Sixty-nine percent of PCPs in this small study practiced in academic settings. Conclusions. Although PCPs were concerned about the DA's length, most found it helpful and informative and felt it would be feasible for medical assistants to deliver the DA before a visit. Implications. Study findings may inform implementation of this and other DAs.

Variation in Breast Cancer Risk Model Estimates Among Women in Their 40s Seen in Primary Care.

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.

Effects by educational attainment of a mammography screening patient decision aid for women aged 75 years and older.

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.

Modifying a Mammography Decision Aid for Older Adult Women with Risk Factors for Low Health Literacy.

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.

Acceptability of a patient decision aid for women aged 70 and older with stage I, estrogen receptor-positive, HER2-negative breast cancer.

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.

Evaluation of a mammography decision aid for women 75 and older at risk for lower health literacy in a pretest-posttest trial.

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.

A Strategy to Prepare Primary Care Clinicians for Discussing Stopping Cancer Screening With Adults Older Than 75 Years.

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.

A Pre-Test-Post-Test Trial of a Breast Cancer Risk Report for Women in Their 40s.

INTRODUCTION: Guidelines recommend individualized breast cancer screening and prevention interventions for women in their 40s. Yet, few primary care clinicians assess breast cancer risk. STUDY DESIGN: Pretest-Posttest trial. SETTING/PARTICIPANTS: Women aged 40-49 years were recruited from one large Boston-based academic primary care practice between July 2017 and April 2019. INTERVENTION: Participants completed a pretest, received a personalized breast cancer risk report, saw their primary care clinician, and completed a posttest. MAIN OUTCOME MEASURES: Using mixed effects models, changes in screening intentions (0-100 scale [0=will not screen to 100=will screen]), mammography knowledge, decisional conflict, and receipt of screening were examined. Analyses were conducted from June 2019 to February 2020. RESULTS: Patient (n=337) mean age was 44.1 (SD=2.9) years, 61.4% were non-Hispanic white, and 76.6% were college graduates; 306 (90.5%) completed follow-up (203 with 5-year breast cancer risk <1.1%). Screening intentions declined from pre- to post-visit (79.3 to 68.0, p<0.0001), especially for women with 5-year risk <1.1% (77.2 to 63.3, p<0.0001), but still favored screening. In the 2 years prior, 37.6% had screening mammography compared with 41.8% over a mean 16 months follow-up (p=0.17). Mammography knowledge increased and decisional conflict declined. Eleven (3.3%) women met criteria for breast cancer prevention medications (ten discussed medications with their clinicians), 22 (6.5%) for MRI (19 discussed MRI with their clinician), and 67 (19.8%) for genetic counseling (47 discussed with the clinician). CONCLUSIONS: Receipt of a personalized breast cancer report was associated with women in their 40s making more-informed and less-conflicted mammography screening decisions and with high-risk women discussing breast cancer prevention interventions with clinicians. TRIAL REGISTRATION: This study is registered at www.clinicaltrials.govNCT03180086.

Effect of a Mammography Screening Decision Aid for Women 75 Years and Older: A Cluster Randomized Clinical Trial.

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.

Scripts and Strategies for Discussing Stopping Cancer Screening with Adults > 75 Years: a Qualitative Study.

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.

Developing a patient decision aid for women aged 70 and older with early stage, estrogen receptor positive, HER2 negative, breast cancer.

OBJECTIVES: Since women ≥70 years with early stage, estrogen receptor positive (ER+), HER2 negative breast cancer face several preference-sensitive treatment decisions, the investigative team aimed to develop a pamphlet decision aid (DA) for such women. MATERIALS AND METHODS: The content of the DA was informed by literature review, international criteria, and expert feedback, and includes information on benefits and risks of lumpectomy versus mastectomy, lymph node surgery, radiotherapy after lumpectomy, and endocrine therapy. It considers women's overall health and was written using low literacy principles. Women from two Boston-based hospitals who were diagnosed in the past 6-24 months were recruited to provide feedback on the DA and its acceptability. The DA was iteratively revised based on their qualitative input. RESULTS: Of 48 eligible women contacted, 35 (73%) agreed to participate. Their mean age was 74.3 years; 33 (94%) were non-Hispanic white; and 24 (67%) were college graduates. Overall, 26 (74%) thought the length of the DA was just right, 29 (83%) thought all or most of the information was clear, 32 (91%) found the DA helpful, and 33 (94%) would recommend it. In open ended comments, participants noted that the DA was clear, well-organized, and would help women prepare for and participate in treatment decision-making. CONCLUSIONS: The investigative team developed a novel breast cancer treatment DA that is acceptable to women ≥70 years with a history of ER+, HER2-, early stage breast cancer. Next, the DA's efficacy needs to be tested with diverse older women newly diagnosed with breast cancer.