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BACKGROUND: As the U.S. population ages, family members increasingly act as informal caregivers, particularly for minority patients and those with limited English proficiency (LEP). However, physicians often do not identify or engage caregivers until there is a health crisis. This study aims to further our understanding of characteristics associated with having a caregiver present at a primary care visit, and better understand the specific roles family caregivers engage in to support older Chinese and Latino primary care patients. METHODS: Primary care patients were surveyed by telephone in a study of language access and communication. Participants included Chinese and Latino primary care patients (≥ 65 years old) from an academic general medicine practice. We asked patients if anyone was in the room with them during their most recent primary care visit (yes = caregiver accompanied). We asked about caregiving support for various needs, and examined associations of patient and visit characteristics with being accompanied, and frequency of caregiver support roles overall and by caregiver accompaniment. RESULTS: Among 906 participants, 80% preferred a non-English language, 64% were women, 88% had Medicare, and mean age was 76 years (range 65-97). 43% were accompanied to their most recent visit. Speaking English 'not at all' vs. 'very well' was associated with being caregiver accompanied (OR 3.5; 95% CI 1.3-9.7), as was older age ≥ 75 vs. 65-74 (OR 2.7; 95% CI 2.0-3.7). The most common roles being supported by caregivers included: transportation to medical appointments (63%), helping with medical decisions (60%), and talking with the doctor about the patient's medical care (54%). Even among unaccompanied patients, substantial proportions reported caregiver support with medical decisions (45%), talking with the doctor (33%), and medical needs at home (26%). CONCLUSIONS: Opportunities for physicians to engage caregivers who have active support roles may be missed, especially if those caregivers are not present at the visit. Future interventions should aim to help physicians identify which patients have caregivers and for what needs, so they may effectively engage caregivers before a health crisis occurs.
Subject(s)
Asian , Caregivers , Hispanic or Latino , Primary Health Care , Aged , Aged, 80 and over , Female , Humans , Male , Age Factors , Asian/psychology , Caregivers/psychology , Communication Barriers , Health Services Needs and Demand , Hispanic or Latino/psychology , Limited English Proficiency , Physician-Patient Relations , United StatesABSTRACT
The United States Preventive Services Task Force (USPSTF) recommends that cervical cancer screening end in average-risk patients with a cervix at 65 years of age if adequate screening measures have been met, defined as having 1) at least three normal consecutive cytology (Pap) tests, or 2) two normal cytology tests and/or two negative high-risk human papillomavirus tests between ages 55-65; the last test should be performed within the prior 5 years. Up to 60 % of all women aged 65 years and older who are ending screening do not meet the criteria for adequate screening. The objective of this study was to understand the process and approach that healthcare clinicians use to determine eligibility to end cervical cancer screening. In 2021 we conducted semi-structured interviews in San Francisco, CA with twelve healthcare clinicians: two family medicine physicians, three general internal medicine physicians, two obstetrician/gynecologists and five nurse practitioners. Thematic analysis, using inductive and deductive coding, was utilized. Three major themes emerged: following guidelines, relying on self-reported data regarding prior screening, and considering sexual activity as a factor in the decision to end screening. All interviewees endorsed following the USPSTF guidelines and they utilized self-report to determine eligibility to end screening. Clinicians' approach was dependent in part on their judgement about the reliability of the patient to convey their screening history. Sexual activity of the patient was considered when making clinical recommendations. Shared decision-making was often utilized. Clinicians voiced a strong reliance on self-reported screening history to end cervical cancer screening.
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BACKGROUND: Lung cancer screening (LCS) is recommended for individuals at high risk due to age and smoking history after a shared decision-making conversation. However, little is known about best strategies for incorporating shared decision-making, especially in a busy primary care setting. OBJECTIVE: To develop a novel tool, Lung Cancer Assessment of Risk and Education (LungCARE) to guide LCS decisions among eligible primary care patients. DESIGN: Pilot cluster randomized controlled trial of LungCARE versus usual care. PARTICIPANTS: Patients of providers in a university primary care clinic, who met criteria for LCS. INTERVENTION: Providers were randomized to LungCARE intervention or control. LungCARE participants completed a computer tablet-based video assessment of lung cancer educational needs in the waiting room prior to a primary care visit. Patient and provider both received a summary handout of patient concerns and responses. MAIN MEASURES: All eligible patients completed baseline interviews by telephone. One week after the index visit, participants completed a follow-up telephone survey that assessed patient-physician discussion of LCS, referral to and scheduling of LCS, as well as LCS knowledge and acceptability of LungCARE. Two months after index visit, we reviewed patients' electronic health records (EHRs) for evidence of a shared decision-making conversation and referral to and receipt of LCS. KEY RESULTS: A total of 66 participants completed baseline and follow-up visits (34: LungCARE; 32: usual care). Mean age was 65.9 (± 6.0). Based on EHR review, compared to usual care, LungCARE participants were more likely to have discussed LCS with their physicians (56% vs 25%; p = 0.04) and to be referred to LCS (44% vs 13%; p < 0.02). Intervention participants were also more likely to complete LCS (32% vs 13%; p < 0.01) and had higher knowledge scores (mean score 6.5 (± 1.7) vs 5.5 (± 1.4; p < 0.01). CONCLUSIONS: LungCARE increased discussion, referral, and completion of LCS and improved LCS knowledge. CLINICAL TRIAL REGISTRATION: NCT03862001.
Subject(s)
Early Detection of Cancer , Lung Neoplasms , Humans , Aged , Lung Neoplasms/diagnosis , Lung Neoplasms/therapy , Decision Making, Shared , Physician-Patient Relations , Electronic Health Records , Randomized Controlled Trials as TopicABSTRACT
BACKGROUND: Anxiety and emotional distress have not been studied in large, diverse samples of patients with pulmonary nodules. RESEARCH QUESTION: How common are anxiety and distress in patients with newly identified pulmonary nodules, and what factors are associated with these outcomes? STUDY DESIGN AND METHODS: This study surveyed participants in the Watch the Spot Trial, a large, pragmatic clinical trial of more vs less intensive strategies for radiographic surveillance of patients with small pulmonary nodules. The survey included validated instruments to measure patient-centered outcomes such as nodule-related emotional distress (Impact of Event Scale-Revised) and anxiety (Six-Item State Anxiety Inventory) 6 to 8 weeks following nodule identification. Mixed-effects models were used to compare outcomes between study arms following adjustment for potential confounders and clustering within enrollment site, while also examining a limited number of prespecified explanatory factors, including nodule size, mode of detection, type of ordering clinician, and lack of timely notification prior to contact by the study team. RESULTS: The trial enrolled 34,699 patients; 2,049 individuals completed the baseline survey (5.9%). Respondents and nonrespondents had similar demographic and nodule characteristics, although more respondents were non-Hispanic and White. Impact of Event Scale-Revised scores indicated mild, moderate, or severe distress in 32.2%, 9.4%, and 7.2% of respondents, respectively, with no difference in scores between study arms. Following adjustment, greater emotional distress was associated with larger nodule size and lack of timely notification by a clinician; distress was also associated with younger age, female sex, ever smoking, Black race, and Hispanic ethnicity. Anxiety was associated with lack of timely notification, ever smoking, and female sex. INTERPRETATION: Almost one-half of respondents experienced emotional distress 6 to 8 weeks following pulmonary nodule identification. Strategies are needed to mitigate the burden of distress, especially in younger, female, ever smoking, and minoritized patients, and those with larger nodules. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov; No.: NCT02623712; URL: www. CLINICALTRIALS: gov.
Subject(s)
Lung Neoplasms , Multiple Pulmonary Nodules , Psychological Distress , Humans , Female , Lung Neoplasms/diagnosis , Multiple Pulmonary Nodules/diagnostic imaging , Multiple Pulmonary Nodules/psychology , Anxiety/epidemiology , Health StatusABSTRACT
Objective: Little is known about women's confidence in their breast cancer screening. We sought to characterize breast cancer screening confidence by imaging modality and clinically assessed breast density. Materials and Methods: We undertook a cross-sectional survey of women ages 40-74 years who received digital mammography (DM), digital breast tomosynthesis (DBT), and/or breast magnetic resonance imaging (MRI) with a normal screening exam in the prior year. The main outcome was women's confidence (Very, Somewhat, A little, Not at all) in their breast cancer screening detecting any cancer. Multivariable logistic regression identified correlates of being very confident in breast cancer screening by screening modality group: Group 1) DM vs. DBT and Group 2) DM or DBT alone vs. with supplemental MRI. Results: Overall, 2329 of 7439 (31.3%) invitees participated, with 30%-61% being very confident in their screening across modality and density subgroups. Having dense versus nondense breasts was associated with lower odds of being very confident (Group 1: odds ratio [OR]: 0.58; 95% confidence interval [CI]: 0.46-0.79; Group 2: OR: 0.56; 95% CI: 0.40-0.79). There were no differences by modality within Group 1, but for Group 2, women undergoing MRI had higher odds of being very confident (OR: 1.69; 95% CI: 1.21-2.37). Other correlates of greater screening confidence were as follows: Group 1-being offered a screening test choice and cost not influencing modality received, and Group 2-decision satisfaction and worry. Conclusions: Women with dense breasts had lower screening confidence regardless of screening modality and those undergoing MRI had higher confidence regardless of density. The importance of informing women about screening options is underscored by observed associations between screening choice, decision satisfaction, and screening confidence. ClinicalTrials.gov: NCT02980848.
Subject(s)
Breast Density , Breast Neoplasms , Female , Humans , Adult , Middle Aged , Aged , Breast Neoplasms/epidemiology , Early Detection of Cancer/methods , Cross-Sectional Studies , Mammography , Mass Screening/methodsABSTRACT
PURPOSE: To describe barriers to lung cancer screening (LCS) among family medicine and general internal medicine primary care physicians (PCPs) and assess the association of barriers with discussion and referral for screening. DESIGN: Cross-sectional survey. SUBJECTS AND SETTINGS: Random sample of primary care physicians (PCPs) in California. MEASURES: PCP practices for discussion and referral for LCS and ratings of LCS barriers. ANALYSIS: We performed exploratory factor analysis to identify four barrier constructs: (1) Physician Visit-Level Barriers to screening referral; (2) Physician System and Evidence Barriers; (3) Patient Cost Barrier; and (4) Other Patient Barriers. We then performed multivariable logistic regression adjusted for physician and practice characteristics to assess the association between the physician-reported barriers and whether PCPs discussed or referred for LCS. RESULTS: 368 physicians responded (response rate 42%). Most worked in large metropolitan areas (80%) and large health systems (59%). After adjusting for physician and practice characteristics, we found that physician-reporting of System and Evidence Barriers was associated with lower odds of discussion or referral for LDCT (aOR .18, 95% CI 0.09-0.37), while physician-reported Visit-Level Barriers were associated with increased odds discussion or referral (aOR 2.65, 95% CI 1.30-5.04). CONCLUSIONS: While physicians reported numerous barriers to LCS, we found that barriers were differentially associated with discussion or referral for screening. As new LCS guidelines broaden screening eligibility, it is critical to address these barriers to achieve higher rates of evidence-based LCS.
Subject(s)
Lung Neoplasms , Physicians , Cross-Sectional Studies , Early Detection of Cancer , Humans , Lung Neoplasms/diagnosis , Mass Screening , Surveys and QuestionnairesABSTRACT
OBJECTIVE: Describe communication methods between primary care ancillary staff, including front desk administrative staff and medical assistants (MAs), and patients with limited-English proficiency (LEP). METHODS: Patients with LEP completed a telephone survey after a primary care visit including questions about communication with ancillary staff (n = 1029). To inform practice improvements and lend qualitative perspective to these quantitative data, we subsequently conducted semi-structured interviews with ancillary staff and physicians. RESULTS: Professional interpreter use was minimal with ancillary staff (<4%). Among patients who did not use their preferred language with bilingual staff, about one-third reported using English to communicate, despite most (≥ 80%) speaking English 'not well' or 'not at all.' In semi-structured interviews, ancillary staff felt basic English sufficient for most patient communication. However, physicians reported taking on extra visit tasks to compensate for the communication barriers between ancillary staff and patients with LEP. CONCLUSIONS: Use of professional interpretation by front desk staff and MAs was minimal. This led many patients with LEP to 'get by' with limited English when communicating with ancillary staff, in turn increasing burden on the physician visit. PRACTICE IMPLICATIONS: Future interventions should focus on increasing use of professional interpretation by outpatient ancillary staff when communicating with LEP patients.
Subject(s)
Communication Barriers , Limited English Proficiency , Outpatients , Humans , LanguageABSTRACT
BACKGROUND: Breast cancer risk assessment tools and risk reduction strategies have advanced significantly over the past few decades but are underutilized in practice, due in part to limited acceptability by patients and physicians. We implemented a tablet-based Breast Cancer Risk Education Intervention (BreastCARE) tailored towards increasing patients' knowledge about their individual risk of developing breast cancer, increasing patient-physician discussion of breast cancer risk reduction practices, and increasing participation in recommended screening. METHODS: We surveyed patients and physicians who received the BreastCARE intervention and analyzed their satisfaction and acceptability of the intervention. We compared patient satisfaction measures by race/ethnicity and used multivariable logistic regression models to examine the effect of race/ethnicity on measures of patient satisfaction with the tablet-based risk assessment and with the breast cancer risk report. We also compared measures of physician satisfaction by resident vs. attending/NP status. Finally, we identified patients' and physicians' suggestions for implementation. RESULTS: Overall, both patients and physicians were highly satisfied with BreastCARE, with some variation by patient race/ethnicity and breast cancer risk status. The risk assessment tool and accompanying risk report helped transmit complex information in an efficient way. CONCLUSIONS: Patient self-administered risk assessment with a health education component at the point of care is acceptable for both patients and physicians, and represents a novel approach to facilitating health promotion. This risk assessment tool should be made routine in primary care accompanied by results that are easy for the patient to understand and actionable for the clinician.
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PURPOSE: We examined prostate cancer patients' participation in research and associated factors by race/ethnicity in a multiethnic sample. METHODS: Men with a new diagnosis of prostate cancer were identified through the California Cancer Registry. Patients completed a cross-sectional telephone interview in English, Spanish, Cantonese or Mandarin. Multivariable logistic regression models, stratified by race/ethnicity, estimated the associations of patient demographic and health characteristics with participation in (1) any research, (2) behavioral research, and (3) biological/clinical research. RESULTS: We included 855 prostate cancer patients: African American (19%), Asian American (15%), Latino (24%), and White (42%). In the overall model of participation in any research, African American men (Odds Ratio (OR) = 2.54, 95% CI 1.63-3.94), and those with two or more comorbidities (OR = 2.20, 95% CI 1.27-3.80) were more likely to report participation. Men 65 years old and older (OR = 0.65, 95% CI 0.47-0.91), those who were married or living with a partner (OR = 0.67, 95% CI 0.45-0.98), and those who completed the interview in Spanish (OR = 0.36, 95% CI 0.15-0.85) were less likely to report participating in any research. Stratified analyses identified racial/ethnic-specific sociodemographic characteristics associated with lower research participation, including Spanish or Chinese language, older age, and lower education. CONCLUSION: African American prostate cancer patients reported higher research participation than all other groups. However, recruitment efforts are still needed to overcome barriers to participation for Spanish and Chinese speakers, and barriers among older adults and those with lower education levels.
Subject(s)
Clinical Trials as Topic/statistics & numerical data , Ethnicity/statistics & numerical data , Patient Participation , Prostatic Neoplasms/ethnology , Aged , Asian/statistics & numerical data , Cross-Sectional Studies , Hispanic or Latino/statistics & numerical data , Humans , Male , Prostatic Neoplasms/diagnosis , Self Report , United States , White People/statistics & numerical dataABSTRACT
Purpose: Asian and Latinx individuals have a high burden of untreated depression. Under-recognition of depressive symptoms may contribute to existing disparities in depression treatment. The objective of this cross-sectional study was to determine whether physicians recognize and treat depressive symptoms for Chinese and Latinx patients during routine primary care visits. Methods: We analyzed data from 1171 Chinese and Latinx patients who were interviewed within 1 week after a primary care visit in a large academic practice, which had not yet implemented universal depression screening. We included participants with depressive symptoms (defined as a Patient Health Questionaire-2 score ≥3) and no prior history of depression (N=118). We investigated whether patients perceived having a mental health need in the prior year and conducted chart reviews to assess provider recognition of depressive symptoms, defined as documentation of symptoms, antidepressant initiation, or mental health referral within 30 days of the visit. We further examined differences by race/ethnicity and language preference. Results: Among the 118 patients with depressive symptoms and no prior depression diagnosis (mean age 68), 71 (61%) reported a mental health need in the prior 12 months; however, providers recognized depressive symptoms in only 8/118 patients (7%). The number of patients with recognized symptoms was small across race/ethnicity and language preference groups and we found no significant differences. Conclusion: Physicians recognized and documented depressive symptoms for 1 in 10 Chinese and Latinx patients during routine primary care visits. Targeted efforts are needed to address under-recognition of symptoms and improve depression care for these populations.
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PURPOSE: The aim of this study was to examine radiologists' beliefs about existing guidelines for pulmonary nodule evaluation. METHODS: A self-administered survey was developed to ascertain awareness of, agreement with, and adherence to published guidelines, including those from the Fleischner Society and the Lung CT Screening Reporting and Data System (Lung-RADS™). Surveys were distributed to 514 radiologists at 13 health care systems that are participating in a large, pragmatic trial of pulmonary nodule evaluation. Prespecified comparisons were made among groups defined by type of health system, years of experience, reader volume, and study arm. RESULTS: The response rate was 26.3%. Respondents were most familiar with guidelines from Fleischner (94%) and Lung-RADS (71%). For both incidental and screening-detected nodules, self-reported adherence to preferred guidelines was very high (97% and 94%, respectively), and most respondents believed that the benefits of adherence outweigh the harms (81% and 74%, respectively). Underlying evidence was thought to be high in quality by 68% of respondents for screening-detected nodules and 41% for incidental nodules. Approximately 70% of respondents believed that the frequency of recommended follow-up was "just right" for both guidelines. Radiologists who practice in nonintegrated health care systems were more likely to believe that the evidence was high in quality (79.5% versus 57.1%) and that the benefits of adherence outweigh the harms (85.1% versus 67.5%). Low-volume readers had lower awareness and self-reported adherence than higher volume readers. CONCLUSIONS: Radiologists reported high levels of familiarity and agreement with and adherence to guidelines for pulmonary nodule evaluation, but many overestimated the quality of evidence in support of the recommendations.
Subject(s)
Lung Neoplasms , Solitary Pulmonary Nodule , Humans , Incidental Findings , Lung Neoplasms/diagnostic imaging , Radiologists , Solitary Pulmonary Nodule/diagnostic imaging , Surveys and Questionnaires , Tomography, X-Ray ComputedABSTRACT
Participants completed a cross-sectional survey about their use of the after visit summary (AVS) at a previous primary care visit. Of 355 participants, 294 (82.8%) recalled receiving it, 67.4% consulted it, 45.9% consulted it more than once, and 31.6% shared the AVS. In multivariable analysis, higher education and older age were associated with AVS consultation. Among the subset of 133 patients recalling personalized free-text instructions, 96% found them easy to understand and 94.4% found them useful. Our findings suggest that the AVS is a useful communication tool and improvement efforts should emphasize clarity for those most vulnerable to communication errors.
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The after-visit summary (AVS), a document generated from the electronic health record that summarizes patients' encounters with the healthcare system, is a widely used communication tool. Its use by and usefulness for populations with limited English proficiency (LEP) and limited health literacy (LHL) is poorly understood. In this cross-sectional study, we assessed use and usefulness of the AVS among English-, Spanish-, Cantonese-, or Mandarin-speaking Latinx and Chinese primary-care patients. Outcome measures were self-reported AVS use (did not use/looked-at only/shared only/looked-at and shared) and usefulness (useful/not useful). Among 993 participants, 57% were ≥65 years old, 61% had LEP, 21% had LHL, 30.2% were Latinx, 69.8% were Chinese. The majority used the AVS (86%) and found it useful (65%). In adjusted models, participants with LEP were more likely to "look at" (OR 1.68, 95% CI 1.07-2.62) and "look at and share" (OR 1.65, 1.02-2.66) the AVS, but less likely to find it useful (OR 0.68, 0.47-0.98) compared to English speakers. Those with LHL were less likely to "look at" (OR 0.60, 0.39-0.93) and less likely to find the AVS useful (OR 0.67, 0.46-0.99) compared to those with adequate health literacy. Our results emphasize the need for easy-to-understand and fully language-concordant AVS.
Subject(s)
Asian/psychology , Health Communication/methods , Health Literacy/statistics & numerical data , Hispanic or Latino/psychology , Language , Patient Satisfaction/ethnology , Primary Health Care , Adult , Aged , Asian/statistics & numerical data , Cross-Sectional Studies , Electronic Health Records , Female , Hispanic or Latino/statistics & numerical data , Humans , Male , Middle AgedABSTRACT
INTRODUCTION: In the USA, African American men bear a disproportionate burden of prostate cancer (PCa) compared with all other groups, having a higher incidence and mortality, poorer quality of life and higher dissatisfaction with care. They are also less likely to receive guideline-concordant treatment (eg, undertreatment of aggressive disease). Inadequate patient-provider communication contributes to suboptimal care, which can be exacerbated by patients' limited health literacy, providers' lack of communication skills and time constraints in low-resource, safety net settings. This study is designed to examine the communication experiences of African American patients with PCa as they undertake treatment decision-making. METHODS AND ANALYSIS: Using an ethnographic approach, we will follow 25 African American men newly diagnosed with PCa at two public hospitals, from diagnosis through treatment decision. Data sources include: (1) audio-recorded clinic observations during urology, radiation oncology, medical oncology and primary care visits, (2) field notes from clinic observations, (3) patient surveys after clinic visits, (4) two in-depth patient interviews, (5) a provider survey, and (6) in-depth interviews with providers. We will explore patients' understanding of their diagnoses and treatment options, sources of support in decision-making, patient-provider communication and treatment decision-making processes. Audio-recorded observations and interviews will be transcribed verbatim. An iterative process of coding and team discussions will be used to thematically analyse patients' experiences and providers' perspectives, and to refine codes and identify key themes. Descriptive statistics will summarise survey data. ETHICS AND DISSEMINATION: To our knowledge, this is the first study to examine in-depth patient-provider communication among African American patients with PCa. For a population as marginalised as African American men, an ethnographic approach allows for explication of complex sociocultural and contextual influences on healthcare processes and outcomes. Study findings will inform the development of interventions and initiatives that promote patient-centred communication, shared decision-making and guideline-concordant care. This study was approved by the University of California San Francisco and the Alameda Health System Institutional Review Boards.
Subject(s)
Black or African American , Prostatic Neoplasms , Communication , Humans , Male , Prostatic Neoplasms/therapy , Quality of Life , San FranciscoABSTRACT
BACKGROUND: Regular mammogram screening for eligible average risk women has been associated with early detection and reduction of cancer morbidity and mortality. Delayed follow-up and resolution of abnormal mammograms limit early detection efforts and can cause psychological distress and anxiety. OBJECTIVE: The goal of this study was to gain insight from women's narratives into how organizational factors related to communication and coordination of care facilitate or hinder timely follow-up for abnormal mammogram results. DESIGN: We conducted 61 qualitative in-person interviews with women from four race-ethnic groups (African American, Chinese, Latina, and White) in three different healthcare settings (academic, community, and safety-net). PARTICIPANTS: Eligible participants had an abnormal mammogram result requiring breast biopsy documented in the San Francisco Mammography Registry in the previous year. APPROACH: Interview narratives included reflections on experience and suggested improvements to communication and follow-up processes. A grounded theory approach was used to identify themes across interviews. KEY RESULTS: Participants' experiences of follow-up and diagnosis depended largely on communication processes. Twenty-one participants experienced a follow-up delay (> 30 days between index mammogram and biopsy). Organizational factors, which varied across different institutions, played key roles in effective communication which included (a) direct verbal communication with the ability to ask questions, (b) explanation of medical processes and terminology avoiding jargon, and (c) use of interpretation services for women with limited English proficiency. CONCLUSION: Health organizations varied in their processes for abnormal results communication and availability of support staff and interpretation services. Women who received care from institutions with more robust support staff, such as bilingual navigators, more often than not reported understanding their results and timely abnormal mammogram follow-up. These reports were consistent across women from diverse ethnic groups and suggest the value of organizational support services between an abnormal mammogram and resolution for improving follow-up times and minimizing patient distress.
Subject(s)
Breast Neoplasms , White People , Breast Neoplasms/diagnostic imaging , Communication , Delivery of Health Care , Female , Hispanic or Latino , Humans , Mammography , San FranciscoABSTRACT
BACKGROUND: Patients with breast cancer or at high risk for breast cancer have supportive care needs. Although cancer centers offer social, psychological, and other support to these patients, these services are not always utilized, and patients continue to report unmet supportive care needs. Reasons for non-utilization of these services have not been well documented. In this analysis, we examine patient reasons for service non-utilization and evaluate patients' interest in receiving information about and paying for other supportive care services. METHODS: Study participants were contacted by email 7-14 months following appointments at the University of California, San Francisco (UCSF) Breast Care Center (BCC) and were invited to complete a 26-question survey about supportive care utilization at UCSF. RESULTS: In total, 195 patients (45%) completed surveys. Of these, 68% had breast cancer. Among patients with breast cancer, fewer than half completed appointments with psychological services. Lack of self-perceived need was the primary reason patients did not pursue psychological services. Overall, 61% of participants were interested in learning more about psychological services, 27% in nutrition counseling, and 20% in exercise counseling. Participants were more interested in individual counseling than in group counseling but were less interested in paying for services. CONCLUSION: Patients often feel that they do not need supportive services. Breast cancer patients are interested in learning more about psychological services, exercise counseling, and nutrition counseling. Although many cancer centers offer group coaching and counseling sessions on these topics, patients may be more willing to engage in individual counseling.
Subject(s)
Breast Neoplasms, Male/therapy , Breast Neoplasms/therapy , Health Resources/standards , Health Services Needs and Demand/statistics & numerical data , Needs Assessment/statistics & numerical data , Palliative Care , Patient Acceptance of Health Care/psychology , Patient Preference , Breast Neoplasms/diagnosis , Breast Neoplasms/psychology , Breast Neoplasms, Male/diagnosis , Breast Neoplasms, Male/psychology , Cancer Care Facilities/organization & administration , Counseling , Female , Humans , Male , Middle Aged , Quality of Life , Self-Assessment , Social Support , Surveys and Questionnaires/statistics & numerical dataABSTRACT
BACKGROUND: A lack of diversity among clinical trial (CT) participants remains a critical problem. Few studies have examined recruitment variability in cancer treatment CTs by cancer type. Given the increasing organ-specific specialization of oncologic care, an understanding of this variability may affect institutional recruitment practices. METHODS: This study examines three data sources from 2010 through 2014. The analyzed sample includes 3,580 CT participants identified in the institutional Clinical Trials Management System (CTMS) database and 20,305 incident cases of invasive cancer within a Comprehensive Cancer Center (CCC) institutional catchment area. A total of 341,114 incident cases of primary invasive cancer were identified through the California Cancer Registry (CCR). The primary study measurements were sociodemographic characteristics of the three populations (age, sex, race/ethnicity, and health insurance). RESULTS: Racial/ethnic disparities were observed, with more incident cases of Whites seen in cancer center (68%) and enrolled in CTs (72%) compared to incident cases in catchment area (67%) (pâ¯<â¯0.001) overall. More older adults (65) were enrolled in prostate cancer CTs (58%) than seen in cancer center (45%) (pâ¯<â¯0.001). Alternatively, fewer older adults were enrolled in breast and colorectal CTs than seen in cancer center (pâ¯<â¯0.001). Among colon (pâ¯<â¯0.001), breast (pâ¯<â¯0.001), and prostate (p<0.001) cancer types, insurance type significantly varied between incident cases in catchment area, cancer center, and among CT participants. For colorectal cancer, no difference in sex distribution was observed overall. A significant difference in insurance type within each cancer type was observed (pâ¯<â¯0.001). CONCLUSIONS: These findings suggest that reporting overall recruitment frequencies may mask differences by cancer type.
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OBJECTIVE: To explore 1) attitudes and priorities among physicians and patients that inform shared decision-making about lung cancer screening in real-world settings and 2) physician and patient perceptions of shared decision-making in real-world lung cancer screening (LCS) practice. MATERIALS AND METHODS: We conducted a qualitative study of 12 physicians and 30 patients meeting LCS screening criteria established by the US Preventative Services Task Force (USPSTF) from two academic primary care practices; one university clinic and one safety net clinic. Interview guides focused on knowledge and attitudes about LCS and experiences with patient-physician communication. RESULTS: Physicians offered LCS inconsistently and were ambivalent about screening because of potential harms, including false positive results, incidental findings, and radiation exposure. Physicians felt that they were incorporating shared decision-making into screening, although they acknowledged that challenges with screening communication posed barriers to shared decision-making. Patients were generally accepting of lung cancer screening. They expressed fewer concerns about screening-related harms but more personal or emotional concerns related to lung cancer. Patients perceived limited shared decision-making in their encounters, but were generally satisfied with the more physician-directed decision-making process. CONCLUSION: Physicians and patients expressed different concerns about LCS and different perceptions about the use of shared decision-making. Findings from this real-world population of screening-eligible patients can be used to inform the design of future interventions to facilitate communication and decision-making tailored to perspectives of both physicians and patients.
Subject(s)
Decision Making, Shared , Early Detection of Cancer/methods , Lung Neoplasms/diagnosis , Physician-Patient Relations , Aged , Clinical Decision-Making , Female , Health Knowledge, Attitudes, Practice , Humans , Lung Neoplasms/psychology , Male , Middle Aged , Perception , United StatesABSTRACT
Identification of mutations that increase lifetime risk of breast and ovarian cancer is critical to improving women's health. Because these mutations are relatively rare in the general population, there is a need for efficient methods to identify appropriate women to undergo genetic testing. The objective of this study was to assess the feasibility, accuracy, and performance of the NCCN guideline-based Tool for Risk Assessment for breast and ovarian Cancer (N-TRAC)-a patient-facing assessment for those affected and unaffected by cancer. This study enrolled a prospective cohort of 100 affected and 100 unaffected women that used N-TRAC in a clinical setting. Recommendations for referral to genetic counseling based on N-TRAC and other standard risk assessment methods were compared.Seventy-seven of the 100 affected women and 35 of the 100 unaffected women were identified as high risk by N-TRAC. The average completion time was approximately 2 min for both groups. N-TRAC accuracy for family history was exceptional in both groups (kappa > 0.96). N-TRAC and other risk assessment methods do not always identify the same high risk population. N-TRAC is an accurate and feasible tool that can assist in identifying women at increased risk for hereditary breast and ovarian cancer and may lead to more informed decision-making.