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1.
Res Involv Engagem ; 9(1): 117, 2023 Dec 11.
Article in English | MEDLINE | ID: mdl-38082391

ABSTRACT

BACKGROUND: There are more than 18 million cancer survivors in the United States. Yet, survivors of color remain under-represented in cancer survivorship research (Saltzman et al. in Contemp Clin Trials Commun 29:100986, 2022; Pang et al. in J Clin Oncol 34:3992-3999, 2016; Lythgoe et al. in Prostate Cancer Prostatic Dis 24:1208-1211, 2021). Our long-term goal is to enroll and follow a cohort of historically under-represented cancer survivors, to better understand modifiable risk factors that influence clinical and quality of life outcomes in these populations. Towards that goal, we describe herein how we applied community-based participatory research approaches to develop inclusive study materials for enrolling such a cohort. METHODS: We implemented community engagement strategies to inform and enhance the study website and recruitment materials for this cohort including: hiring a dedicated engagement coordinator/community health educator as a member of our team; working with the Helen Diller Family Comprehensive Cancer Center Office of Community Engagement (OCE) and Community Advisory Board members; presenting our educational, research, and study recruitment materials at community events; and establishing a community advisory group specifically for the study (4 individuals). In parallel with these efforts, 20 semi-structured user testing interviews were conducted with diverse cancer survivors to inform the look, feel, and usability of the study website. RESULTS: Engagement with community members was a powerful and important approach for this study's development. Feedback was solicited and used to inform decisions regarding the study name (eat move sleep, EMOVES), logo, study website content and imagery, and recruitment materials. Based on community feedback, we developed additional educational materials on healthy groceries and portion size in multiple languages and created a study video. CONCLUSIONS: Including an engagement coordinator as a permanent team member, partnering with the institutional community outreach and engagement resources (i.e., OCE), and allocating dedicated time and financial support for cultivating relationships with stakeholders outside the university were critical to the development of the study website and materials. Our community guided strategies will be tested as we conduct enrollment through community advisor networks and via the state cancer registry.


Under-represented racial and ethnic populations are diagnosed with and die from cancer at higher rates than white Americans but are less likely to be included in research studies. This has resulted in limited data on these populations, especially regarding cancer survivorship and lifestyle factors such as diet, exercise, and sleep. Our aim was to develop inclusive and appealing study materials for enrolling a diverse cancer survivorship cohort by integrating a community engagement coordinator/health educator into the research team and collaborating with our cancer center's office of community engagement community advisory board. An additional bridge was developed between community partners and the research team by establishing a community advisory board specifically for the study. We also conducted 20 user testing interviews with cancer survivors and community stakeholders to inform the look, feel, and usability of the study website during development. Our community partnerships and interviews assisted with decisions on our study name, Eat Move Sleep Study (EMOVES), logo, redesigning the study website, and study format. Our partners also provided guidance that highlighted community need and development of new educational materials for healthy diet (postcard sized grocery list on healthy eating) and a video-based recruitment tool for the study. Incorporation of an engagement coordinator into the research team, building an ongoing relationship with our cancer center's office of community engagement, and adding community advisors onto our study team has greatly impacted our study approach and design.

2.
Curr Epidemiol Rep ; 9(1): 10-21, 2022.
Article in English | MEDLINE | ID: mdl-35342686

ABSTRACT

Purpose of Review: Cancer incidence and mortality are decreasing, but inequities in outcomes persist. This paper describes the San Francisco Cancer Initiative (SF CAN) as a model for the systematic application of epidemiological evidence to reduce the cancer burden and associated inequities. Recent Findings: SF CAN is a multi-institutional implementation of existing evidence on the prevention and early detection of five common cancers (i.e., breast, prostate, colorectal, liver, and lung/tobacco-related cancers) accounting for 50% of cancer deaths in San Francisco. Five Task Forces follow individual logic models designating inputs, outputs, and outcomes. We describe the progress made and the challenges faced by each Task Force after 5 years of activity. Summary: SF CAN is a model for how the nation's Comprehensive Cancer Centers are ideally positioned to leverage cancer epidemiology for evidence-based initiatives that, along with genuine community engagement and multiple stakeholders, can reduce the population burden of cancer.

4.
BMJ Open ; 10(8): e035032, 2020 08 05.
Article in English | MEDLINE | ID: mdl-32759241

ABSTRACT

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 Francisco
5.
Am J Prev Med ; 58(1): e1-e9, 2020 01.
Article in English | MEDLINE | ID: mdl-31862104

ABSTRACT

INTRODUCTION: Cancer risk and screening data are limited in their ability to inform local interventions to reduce the burden of cancer in vulnerable populations. The San Francisco Health Information National Trends Survey was developed and administered to assess the use of cancer-related information among under-represented populations in San Francisco to provide baseline data for the San Francisco Cancer Initiative. METHODS: The survey instrument was developed through consultation with research and community partners and translated into 4 languages. Participants were recruited between May and September 2017 through community-based snowball sampling with quotas to ensure adequate numbers of under-represented populations. Chi-square tests and multivariate logistic regression were used between 2018 and 2019 to assess differences in screening rates across groups and factors associated with cancer screening. RESULTS: One thousand twenty-seven participants were recruited. Asians had lower rates of lifetime mammogram (p=0.02), Pap test (p<0.01), and prostate-specific antigen test (p=0.04) compared with non-Asians. Hispanics had higher rates of lifetime mammogram (p=0.02), lifetime Pap test (p=0.01), recent Pap test (p=0.03), and lifetime prostate-specific antigen test (p=0.04) compared with non-Hispanics. Being a female at birth was the only factor that was independently associated with cancer screening participation (AOR=3.17, 95% CI=1.40, 7.19). CONCLUSIONS: Screening adherence varied by race, ethnicity, and screening type. A collaborative, community-based approach led to a large, diverse sample and may serve as a model for recruiting diverse populations to add knowledge about cancer prevention preferences and behaviors. Results suggest targeted outreach efforts are needed to address disparate cancer screening behaviors within this diverse population.


Subject(s)
Colonoscopy/statistics & numerical data , Early Detection of Cancer , Mammography/statistics & numerical data , Neoplasms , Papanicolaou Test/statistics & numerical data , Asian/statistics & numerical data , Black People/statistics & numerical data , Female , Hispanic or Latino/statistics & numerical data , Humans , Male , Middle Aged , Neoplasms/epidemiology , Neoplasms/prevention & control , Prostate-Specific Antigen , San Francisco/epidemiology , Sex Factors , Surveys and Questionnaires
6.
Prev Med ; 126: 105751, 2019 09.
Article in English | MEDLINE | ID: mdl-31226342

ABSTRACT

Social media has become a valuable tool for disseminating cancer prevention information. However, the design of messages for achieving wide dissemination remains poorly understood. We conducted a multi-method study to identify the effects of sender type (individuals or organizations) and content type (personal experiences or factual information) on promoting the spread of cervical cancer prevention messages over social media. First, we used observational Twitter data to examine correlations between sender type and content type with retweet activity. Then, to confirm the causal impact of message properties, we constructed 900 experimental tweets according to a 2 (sender type) by 2 (content type) factorial design and tested their probabilities of being shared in an online platform. A total of 782 female participants were randomly assigned to 87 independent 9-person online groups and each received a unique message feed of 100 tweets drawn from the 4 experimental cells over 5 days. We conducted both tweet-level and group-level analyses to examine the causal effects of tweet properties on influencing sharing behaviors. Personal experience tweets and organizational senders were associated with more retweets. However, the experimental study revealed that informational tweets were shared significantly more (19%, 95% CI: 11 to 27) than personal experience tweets; and organizational senders were shared significantly more (10%, 95% CI: 3 to 18) than individual senders. While rare personal experience messages can achieve large success, they are generally unsuccessful; however, there is a reproducible causal effect of messages that use organizational senders and factual information for achieving greater peer-to-peer dissemination.


Subject(s)
Consumer Health Information , Early Detection of Cancer , Information Dissemination , Social Media/statistics & numerical data , Uterine Cervical Neoplasms/prevention & control , Female , Health Promotion , Humans , Research Design
7.
PLoS One ; 14(2): e0211931, 2019.
Article in English | MEDLINE | ID: mdl-30742683

ABSTRACT

INTRODUCTION: Cervical cancer prevention is possible through use of the HPV vaccine and Pap tests, yet the vaccine remains underutilized. METHODS: We obtained publicly-available Twitter data from 2014 using three sampling strategies (top-ranked, simple random sample, and topic model) based on key words related to cervical cancer prevention. We conducted a content analysis of 100 tweets from each of the three samples and examined the extent to which the narratives and frequency of themes differed across samples. RESULTS: Advocacy-related tweets constituted the most prevalent theme to emerge across all three sample types, and were most frequently found in the top-ranked sample. A random sample detected the same themes as topic modeling, but the relative frequency of themes identified from topic modeling fell in-between top-ranked and random samples. DISCUSSION: Variations in themes uncovered by different sampling methods suggest it is useful to qualitatively assess the relative frequency of themes to better understand the breadth and depth of social media conversations about health. CONCLUSIONS: Future studies using social media data should consider sampling methods to uncover a wider breadth of conversations about health on social media.


Subject(s)
Cell Phone Use , Perception , Social Media , Uterine Cervical Neoplasms/prevention & control , Female , Humans , Random Allocation
8.
J Womens Health (Larchmt) ; 28(11): 1468-1475, 2019 11.
Article in English | MEDLINE | ID: mdl-30222505

ABSTRACT

Background: Risk assessment and discussion of lifestyle in primary care are crucial elements of breast cancer prevention and risk reduction. Our objective was to evaluate the impact of a breast cancer risk assessment and education tool on patient-physician discussion of behaviors and breast cancer risk. Materials and Methods: We conducted a randomized controlled trial with an ethnically and linguistically diverse sample of women, ages 40-74, from two primary care practices. Intervention participants completed a tablet computer-based Breast Cancer Risk Assessment and Education (BreastCARE) intervention in the waiting room before a scheduled visit. Both patients and physicians received an individualized risk report to discuss during the visit. Control patients underwent usual care. Telephone surveys assessed patient-physician discussion of weight, exercise, and alcohol use 1 week following the visit. Results: Among the 1235 participants, 27.7% (161/580) intervention and 22.3% (146/655) usual-care patients were high risk for breast cancer. Adjusting for clustering by physician, the intervention increased discussions of regular exercise (odds ratios [OR] = 1.94, 1.50-2.51) and weight (OR = 1.56, 1.23-1.96). There was no effect of the intervention on discussion of alcohol. Women with some college education were more likely to discuss their weight than those with high school education or less (OR = 1.75, 1.03-2.96). Similarly, non-English speakers were more likely to discuss their weight compared with English speakers (OR = 2.33, 1.04-5.22). Conclusions: BreastCARE is a feasible risk assessment tool that can successfully promote discussions about modifiable breast cancer risk factors between patients and primary care physicians.


Subject(s)
Breast Neoplasms/prevention & control , Computers, Handheld , Life Style , Physician-Patient Relations , Adult , Aged , Alcohol Drinking/adverse effects , Body Mass Index , Exercise , Female , Humans , Middle Aged , Primary Health Care , Risk Assessment/methods , Risk Factors , Risk Reduction Behavior , Software , Surveys and Questionnaires
9.
J Cancer Educ ; 34(5): 928-937, 2019 Oct.
Article in English | MEDLINE | ID: mdl-30014170

ABSTRACT

Latinos lag behind other racial/ethnic groups in pursuit of master's and doctoral degrees in public health and the health sciences. Éxito! is modeled after the Minority Training Program in Cancer Control Research (MTPCCR), which found that Latino participants went on to doctoral programs at a lower rate (12%) than African American (36%) and Asian participants (33%). Éxito! Latino Cancer Research Leadership Training is designed to increase the number of Latinos who pursue doctoral degrees and careers in cancer health disparity (CHD) research. The program has three components: recruitment with partnering universities and associations, an ethnically tailored intensive 5-day summer institute (SI), and 6-month paid internships offered on a competitive basis. Up to 20 master's level students/master's level health professionals are selected annually to participate in the SI; faculty are leaders in Latino CHD research. Funded by the National Cancer Institute (NCI) from 2011 to 2015, Éxito! recruited 101 summer institute participants and awarded 21 internships. Analyses of pre- and post-institute surveys showed significant increases in confidence to apply to a doctoral program and academic self-efficacy among summer institute participants, and significantly increased research skills among interns. Forty-three percent of Éxito! program alumni applied to a doctoral program (our main outcome) and 29.7% were currently enrolled. This is nearly double the rate for MTPCCR Latino participants (17%) for the corresponding time period. Éxito! is a model pipeline program for encouragement of Latinos on to doctoral programs (e.g., PhD and DrPH) with the potential to increase the pool of cancer health disparity researchers.


Subject(s)
Biomedical Research/education , Education, Graduate/methods , Hispanic or Latino/education , Medical Oncology/education , Minority Groups/education , Neoplasms/prevention & control , Public Health/education , Adult , Female , Humans , Male , Neoplasms/ethnology , Students , Surveys and Questionnaires , Universities
10.
J Cancer Educ ; 34(4): 819-822, 2019 Aug.
Article in English | MEDLINE | ID: mdl-29948924

ABSTRACT

Online social media platforms represent a promising opportunity for public health promotion. Research is limited, however, on the effectiveness of social media at improving knowledge and awareness of health topics and motivating healthy behavior change. Therefore, we investigated whether participation in an online social media platform and receipt of brief, tailored messages is effective at increasing knowledge, awareness, and prevention behaviors related to human papillomavirus (HPV) and cervical cancer. We conducted an online study in which 782 recruited participants were consecutively assigned to nine-person groups on a social media platform. Participants were shown a unique random set of 20 tailored messages per day over five days. Participants completed a baseline and post survey to assess their knowledge, awareness, and prevention behaviors related to HPV and cervical cancer. There were no statistically significant changes in knowledge and prevention behaviors from the baseline to the post survey among study participants. There was a modest, statistically significant change in response to whether participants had ever heard of HPV, increasing from 90 to 94% (p = 0.003). Our findings suggest that most study participants had substantial knowledge, awareness, and engagement in positive behaviors related to cervical cancer prevention at the start of the study. Nevertheless, we found that HPV awareness can be increased through brief participation in an online social media platform and receipt of tailored health messages. Further investigation that explores how social media can be used to improve knowledge and adoption of healthy behaviors related to cervical cancer is warranted.


Subject(s)
Health Knowledge, Attitudes, Practice , Health Promotion/methods , Papillomavirus Infections/prevention & control , Papillomavirus Vaccines/administration & dosage , Social Media/statistics & numerical data , Uterine Cervical Neoplasms/prevention & control , Adolescent , Adult , Female , Humans , Papillomaviridae/isolation & purification , Papillomavirus Infections/complications , Papillomavirus Infections/virology , Surveys and Questionnaires , United States/epidemiology , Uterine Cervical Neoplasms/epidemiology , Uterine Cervical Neoplasms/virology , Young Adult
11.
Eur J Med Genet ; 62(5): 357-367, 2019 May.
Article in English | MEDLINE | ID: mdl-30553023

ABSTRACT

Effective communication, where all parties share a common understanding, is necessary to realize the promise of Genomic Medicine. It is especially salient given the imperative to increase the participation of diverse populations in genomics research and to expand the reach of clinical genomics. We have previously shown that cancer genetic counseling is suboptimal for patients with limited health literacy. To address this finding, we implemented a pilot study to improve verbal communication between genetic counselors and their patients of limited health literacy that consisted of: i) curriculum development and delivery of a Genetic Counselors (GC) communication workshop; ii) two-month post-workshop interviews with GC participants (n = 9); iii) observations/audio recordings of counseling sessions involving 24 patients and two GC workshop participants; iv) post-counseling interviews with patients (n = 9). The 4.5-h workshop presented evidenced-based principles and strategies for effective communication with limited health literacy patients (e.g. use of plain language and teach-back), and offered specific techniques and exercises to practice adoption of such practices in the genetic counseling context. GCs expressed appreciation for the opportunity to refine their skills; however, they reported that some strategies were challenging given their professional training and communication habits. For example, GCs were concerned that use of plain language could undermine efforts to obtain informed consent and provide scientifically accurate information. Observations and patient interviews after the workshop revealed that GCs were able to employ the communication strategies with positive effects, with patients indicating sufficient understanding of the genetic test and its implications as well as satisfaction with the counselors' communication. While derived from research on communication with those of limited health literacy, the communication approaches taught in the GC workshop could benefit most patients, given the high rates of low health literacy in many countries, and the many factors beyond health literacy that can contribute to reduced comprehension in health care environments.


Subject(s)
Genetic Counseling/psychology , Health Communication , Health Literacy , Precision Medicine/psychology , Adult , Female , Genetic Counseling/methods , Humans , Male , Middle Aged , Practice Guidelines as Topic , Precision Medicine/methods
12.
Health Aff (Millwood) ; 37(1): 54-61, 2018 01.
Article in English | MEDLINE | ID: mdl-29309234

ABSTRACT

The great potential for reducing the cancer burden and cancer disparities through prevention and early detection is unrealized at the population level. A new community-based coalition, the San Francisco Cancer Initiative (SF CAN), focuses on the city and county of San Francisco, where cancer is the leading cause of death. SF CAN is an integrated, cross-sector collaboration launched in November 2016. It brings together the San Francisco Department of Public Health; the University of California, San Francisco; major health systems; and community coalitions to exert collective impact. Its goals are to reduce the burden of five common cancers-breast, lung and other tobacco-related, prostate, colorectal, and liver-for which there are proven methods of prevention and detection, while reducing known disparities. We describe the infrastructure, coalition building, and early progress of this initiative, which may serve as a model for other municipalities.


Subject(s)
Community Participation , Cooperative Behavior , Early Detection of Cancer/methods , Neoplasms/diagnosis , Neoplasms/prevention & control , Public-Private Sector Partnerships , Humans , Neoplasms/mortality , Resource Allocation , San Francisco
13.
J Community Genet ; 9(3): 263-276, 2018 Jul.
Article in English | MEDLINE | ID: mdl-29197036

ABSTRACT

As genetics and genomics become part of mainstream medicine, these advances have the potential to either reduce or exacerbate health disparities. Relatively, little research has explored the quality of genetic counseling communication experienced by limited English proficiency patients, especially Chinese Americans. We observed and audio recorded genetic counseling appointments (n = 40) of low-income, limited English-proficient Chinese patients (n = 25) and conducted post-visit interviews (n = 17) using stimulated recall to examine patient understanding of the communication. Standard techniques based in grounded theory, including iterative data review and multiple coders, were used to analyze observation fieldnotes and interview transcripts and to identify these themes: (1) strong beliefs in environmental causes of cancer and skepticism about genetic causes, (2) willingness to undergo genetic testing despite skepticism of hereditary cause of cancer, (3) misunderstanding of key information needed to make informed decisions about testing and screening/prevention options, (4) variable quality of medical interpretation, and (5) selective family communication about cancer and genetic counseling and testing. Together, these themes describe substantial gaps in communication and identify the need for genetic counseling techniques and skills that enable counselors to communicate more effectively across language, literacy, and culture. Understanding the mechanisms of inheritance and the implications of genetic test results can be challenging for anyone, and it is exceptionally daunting for those who have limited English proficiency and/or low literacy. For Chinese immigrant patients to reap the full benefits of genetic counseling and testing, effective communication is essential. Research on interventions to improve communication is needed to ensure that disparities do not widen as genomic medicine reaches a more diverse population.

14.
J Immigr Minor Health ; 20(6): 1483-1489, 2018 Dec.
Article in English | MEDLINE | ID: mdl-29168060

ABSTRACT

Chinese Americans have low colorectal cancer (CRC) screening rates. It is unclear whether physicians should offer all CRC screening modalities (fecal occult blood test [FOBT], sigmoidoscopy, colonoscopy) to Chinese Americans to increase screening. Seven hundred and twenty-five Chinese Americans were asked in a survey if their physician had ever recommended CRC screening and to self-report receipt and type of CRC screening. Participants whose physician had recommended all CRC screening modalities were significantly more likely to report ever having screening (adjusted odds ratio 4.29, 95% CI 1.26-14.68) and being up-to-date (4.06, 95% CI 2.13-7.74) than those who reported that their physician only recommended FOBT. Participants who received a recommendation of only one type of screening did not report a significant difference in ever having or being up-to-date for screening. A potential strategy to increase CRC screening among Chinese Americans is for clinicians to recommend all available CRC screening modalities to each patient.


Subject(s)
Asian/psychology , Colorectal Neoplasms/diagnosis , Early Detection of Cancer/methods , Patient Acceptance of Health Care/ethnology , Physician's Role/psychology , Acculturation , Age Factors , Aged , China/ethnology , Colonoscopy/methods , Colorectal Neoplasms/ethnology , Emigrants and Immigrants , Female , Health Services Accessibility , Humans , Male , Middle Aged , Occult Blood , Sex Factors , Socioeconomic Factors , United States/epidemiology
15.
Cancer ; 123(18): 3468-3475, 2017 Sep 15.
Article in English | MEDLINE | ID: mdl-28603859

ABSTRACT

BACKGROUND: Delays in abnormal mammogram follow-up contribute to poor outcomes. In the current study, the authors examined differences in abnormal screening mammogram follow-up between non-Hispanic white (NHW) and Asian women. METHODS: The authors used a prospective cohort of NHW and Asian women with a Breast Imaging, Reporting and Data System (BI-RADS) abnormal result of category 0 or 3-plus in the San Francisco Mammography Registry between 2000 and 2010. Kaplan-Meier estimation for the median number of days to follow-up with a diagnostic radiologic test was performed, and the authors compared the percentage of women with follow-up at 30 days, 60 days, and 90 days and no follow-up at 1 year for Asian women overall (and Asian ethnic groups) and NHW women. In addition, the authors assessed the relationship between race/ethnicity and time to follow-up with adjusted Cox proportional hazards models. RESULTS: Among Asian women, Vietnamese and Filipina women had the longest, and Japanese women the shortest, median follow-up (32 days, 28 days, and 19 days, respectively) compared with NHW women (15 days). The percentage of women receiving follow-up at 30 days was lower for Asians versus NHWs (57% vs 77%; P<.0001), and these disparities persisted at 60 days and 90 days for all Asian ethnic groups except Japanese. Asian women had a reduced hazard of follow-up compared with NHW women (adjusted hazard ratio, 0.70; 95% confidence interval, 0.69-0.72). Asian women also had a higher rate of receiving no follow-up compared with NHW women (15% vs 10%; P<.001); among Asian ethnic groups, Filipinas were found to have the highest percentage of women with no follow-up (18.1%). CONCLUSIONS: Asian women, particularly Filipina and Vietnamese women, were less likely than NHW women to receive timely follow-up after an abnormal screening mammogram. Research should disaggregate Asian ethnicity to better understand and address barriers to effective cancer prevention. Cancer 2017;123:3468-75. © 2017 American Cancer Society.


Subject(s)
Asian/statistics & numerical data , Breast Neoplasms/diagnostic imaging , Breast Neoplasms/ethnology , Healthcare Disparities/ethnology , Mammography/methods , White People/statistics & numerical data , Breast Neoplasms/pathology , Cohort Studies , Early Detection of Cancer/methods , Early Detection of Cancer/statistics & numerical data , Female , Follow-Up Studies , Humans , Kaplan-Meier Estimate , Mammography/statistics & numerical data , Middle Aged , Multivariate Analysis , Needs Assessment , Proportional Hazards Models , Registries , Retrospective Studies , San Francisco
17.
J Genet Couns ; 26(5): 1090-1104, 2017 Oct.
Article in English | MEDLINE | ID: mdl-28289853

ABSTRACT

As genetics and genomics become part of mainstream Medicine, these advances have the potential to reduce or exacerbate health disparities. Gaps in effective communication (where all parties share the same meaning) are widely recognized as a major contributor to health disparities. The purpose of this study was to examine GC-patient communication in real time, to assess its effectiveness from the patient perspective, and then to pilot intervention strategies to improve the communication. We observed 64 English-, 35 Spanish- and 25 Chinese-speaking (n = 124) public hospital patients and 10 GCs in 170 GC appointments, and interviewed 49 patients who were offered testing using the audio recordings to stimulate recall and probe specific aspects of the communication. Data analyses were conducted using grounded theory methods and revealed a fundamental mismatch between the information provided by GCs and the information desired and meaningful to patients. Several components of the communication that contributed to this mismatch and often resulted in ineffective communication included: (1) too much information; (2) complex terminology and conceptually difficult presentation of information; (3) information perceived as not relevant by the patient; (4) unintentional inhibition of patient engagement and question-asking; (5) vague discussions of screening and prevention recommendations. Our findings indicate a need to transform the standard model of genetic counseling communication using evidence-based principles and strategies from other fields of Medicine. The high rates of limited health literacy in the US, increasing access of diverse populations to genetic services, and growing complexity of genetic information have created a perfect storm. If not directly addressed, this convergence is likely to exacerbate health disparities in the genomic age.


Subject(s)
Cultural Diversity , Genetic Counseling/statistics & numerical data , Health Literacy/statistics & numerical data , Healthcare Disparities , Neoplasms/genetics , Vulnerable Populations/statistics & numerical data , Female , Humans , Male , Middle Aged
18.
Am J Prev Med ; 52(3): e67-e76, 2017 Mar.
Article in English | MEDLINE | ID: mdl-27986352

ABSTRACT

INTRODUCTION: Chinese Americans have low colorectal cancer (CRC) screening rates. Evidence-based interventions to increase CRC screening in this population are lacking. This study aims to compare the efficacy of two interventions in increasing CRC screening among Chinese Americans. DESIGN: Cluster randomized comparative trial. SETTING/PARTICIPANTS: From 2010 to 2014, a community-academic team conducted this study in San Francisco, CA with Chinese Americans aged 50-75 years who spoke English, Cantonese, or Mandarin. INTERVENTION: Lay health worker (LHW) intervention plus in-language brochure (LHW+Print) versus brochure (Print). LHWs in the LHW+Print arm were trained to teach participants about CRC in two small group sessions and two telephone calls. MAIN OUTCOME MEASURES: Change in self-reports of ever having had CRC screening and being up to date for CRC screening from baseline to 6 months post-intervention. Statistical analysis was performed from 2014 to 2015. RESULTS: This study recruited 58 LHWs, who in turn recruited 725 participants. The average age of the participants was 62.2 years, with 81.1% women and 99.4% foreign born. Knowledge increase was significant (p<0.002) for nine measures in the LHW+Print group and six in the Print group. Both groups had increases in having ever been screened for CRC (LHW+Print, 73.9%-88.3%, p<0.0001; Print, 72.3%-79.5%, p=0.0003) and being up to date for CRC screening (LHW+Print, 60.0%-78.1%, p<0.0001; Print, 58.1%-64.1%, p=0.0003). In multivariable analyses, the intervention OR for LHW+Print versus Print was 1.94 (95% CI=1.34, 2.79) for ever screening and 2.02 (95% CI=1.40, 2.90) for being up to date. CONCLUSIONS: Both in-language print materials and LHW outreach plus print materials increased CRC screening among Chinese Americans. The combination of LHW+Print was more effective than Print alone. These findings can guide clinicians and policymakers in choosing appropriate interventions to increase CRC screening among Chinese American immigrants. TRIAL REGISTRATION: This study is registered at www.clinicaltrials.gov NCT00947206.


Subject(s)
Colorectal Neoplasms/diagnosis , Early Detection of Cancer/methods , Health Education/methods , Mass Screening/methods , Aged , Asian , Female , Health Knowledge, Attitudes, Practice , Health Promotion , Humans , Male , Middle Aged , Multivariate Analysis , Pamphlets , San Francisco
19.
Public Health Genomics ; 19(6): 342-351, 2016.
Article in English | MEDLINE | ID: mdl-27788513

ABSTRACT

BACKGROUND/AIMS: We compared the 6-Point Scale, a screening tool to identify low-income women for referral to genetic counseling, with genetic counselors' (GCs') recommendation and the Referral Screening Tool (RST). METHODS: RST and 6-Point Scale scores were computed for 2 samples: (1) S1, public hospital mammography clinic patients in 2006-2010 (n = 744), classified by GCs as high risk (meriting referral to counseling) or not high risk, and (2) S2, primary care patients enrolled in an education intervention study in 2011-2012 (n = 1,425). Sensitivity, specificity, and area under the ROC curve (AUROC) were computed for the 6-Point Scale score versus GC and RST classification as high risk. RESULTS: The 6-Point Scale had low sensitivity (0.27, 95% confidence interval [CI] 0.21-0.34) but high specificity (0.97, 95% CI 0.95-0.99) and AUROC (0.85, 95% CI 0.81-0.90) versus GC classification, and high sensitivity (S1: 0.90, 95% CI 0.79-1.00; S2: 0.94, 95% CI 0.87-0.97), specificity (S1: 0.95, 95% CI 0.93-0.97; S2: 0.94, 95% CI 0.93-0.96), and AUROC (S1: 0.98, 95% CI 0.96-0.99; S2: 0.98, 95% CI 0.98-0.99) versus the RST. CONCLUSION: The 6-Point Scale compared favorably with the RST, a validated instrument, and is potentially useful as a simple tool for administration in a safety net setting, requiring minimal time investment by primary care physicians and their staff and no financial investment in tablet computers or software.


Subject(s)
Breast Neoplasms/diagnosis , Early Detection of Cancer/methods , Adult , Aged , Ambulatory Care Facilities , Breast Neoplasms/genetics , Early Detection of Cancer/standards , Female , Genetic Counseling/organization & administration , Genetic Predisposition to Disease , Humans , Mammography , Middle Aged , Poverty , Predictive Value of Tests , Primary Health Care/organization & administration , Referral and Consultation/organization & administration , Risk Assessment/methods , Risk Factors , Sensitivity and Specificity
20.
J Health Dispar Res Pract ; 9(2): 154-167, 2016.
Article in English | MEDLINE | ID: mdl-27642542

ABSTRACT

Semi-structured interviews were conducted with 16 Latino cancer patients diagnosed in California; 10 health professionals from the San Francisco Bay Area and Fresno, California; and 10 Cancer Information Services (CIS) information specialists from the regional offices handling calls from Spanish-speakers. Interview guides were designed by the investigators to answer three main research questions: 1) How do Latinos obtain information about cancer and what types of information do they access?; 2) What sources of cancer information do they seek out and find credible?; and 3) What are the barriers and facilitators to Latinos obtaining cancer information? Stakeholders generally viewed health professionals as the most credible source of cancer information. All groups regarded family and friends as important sources of information. Patients and health professionals tended to differ on the value of print materials. Although patients found them generally useful, health professionals tended to view them as inadequate for meeting the informational needs of their Latino patients due to the challenge of low health literacy. Health professionals also tended to undervalue Internet resources compared to patients and CIS specialists. All stakeholders viewed language, ethnic discordance and the impact on patients of the initial diagnosis as barriers to effective communication of cancer information. Health professionals and CIS specialists, but not patients, mentioned low literacy as a barrier. Our findings underscore the importance of the physician-patient relationship as a point of intervention to address the unmet informational and psychosocial needs of Latino cancer patients.

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