Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers.

BACKGROUND: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas. METHODS: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. RESULTS: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. CONCLUSIONS: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research.

Health Information-seeking Behaviors and Preferences of a Diverse, Multilingual Urban Cohort.

INTRODUCTION: In order to address health disparities, it is important to understand how vulnerable individuals seek information. This study used an adapted version of the Health Information National Trends Survey (HINTS) administered in English, Spanish, and Chinese to describe the behaviors and preferences of a diverse group of vulnerable urban residents. METHODS: We administered a modified HINTS survey in English, Spanish, and Chinese and used purposive sampling to ensure 50% were non-English speakers evenly divided between Spanish and Chinese speakers, and 50% of English-speakers identified as Black. We used multivariable logistic regression to determine characteristics associated with sources used for health information and preferences for delivery of health information. RESULTS: Among 1027survey respondents (514 English, 256 Spanish, 260 Chinese), 55% had adequate health literacy, and 50% reported household income <$20,000, but 77% reported owning a smartphone. A plurality sought health information on the Internet (39%) or from a health care provider (36%). In multivariable analyses, smartphone ownership predicted higher odds of seeking health information on the Internet [odds ratio, (OR) 2.98; 95% confidence interval (CI), 1.81-4.91]. Participants most preferred email (41%) and brochures (40%) for delivery of health information, but non-English survey respondents were less likely to prefer email: Spanish (OR, 0.30; 95% CI, 0.11-0.83) and Chinese (OR, 0.25; 95% CI, 0.09-0.71). Smartphone ownership predicted an email preference (OR, 2.19; 95% CI, 1.43-3.36). CONCLUSIONS: Among vulnerable populations, smartphone ownership and language preferences impact preferences for seeking and receiving health information. These preferences need to be considered in designing health messages.

Social Media as a Tool to Promote Health Awareness: Results from an Online Cervical Cancer Prevention Study.

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.

Using Social Media to Target Cancer Prevention in Young Adults: Viewpoint.

Focusing on primary cancer prevention can reduce its incidence. Changing health behaviors is critical to cancer prevention. Modifiable cancer risk factors include lifestyle behaviors related to vaccination, physical activity, weight control and maintenance, alcohol consumption, and tobacco use. These health habits are often formed in young adulthood, a life stage which currently intersects with the growing population of digital natives whose childhood occurred in the internet era. Social media is a critical communication medium to reach this population of digital natives. Using a life course perspective, the purpose of this viewpoint paper is to describe the current landscape of nascent research using social media to target cancer prevention efforts in young adults and propose future directions to strengthen the scientific knowledge supporting social media strategies to promote cancer prevention behaviors. Leveraging social media as a health promotion tool is a promising strategy to impact modifiable behavioral risk factors for cancer and warrants further research on developing effective communication strategies in young adults to prevent cancer in the future generations.

Healthcare Communication Barriers and Self-Rated Health in Older Chinese American Immigrants.

Older Chinese immigrants are a growing population in the United States who experience multiple healthcare communication barriers such as limited English proficiency and low health literacy. Each of these obstacles has been associated with poor health outcomes but less is known about their effects in combination. This study examined the association between healthcare communication barriers and self-rated health among older Chinese immigrants. Cross-sectional survey data were obtained from 705 Chinese American immigrants ages 50-75 living in San Francisco, California. Communication barriers examined included spoken English proficiency, medical interpreter needs, and health literacy in written health information. The study sample (81 % females, mean age = 62) included 67 % who spoke English poorly or not at all, 34 % who reported needing a medical interpreter, and 37 % who reported "often" or "always" needing assistance to read health information. Two-thirds reported poor self-rated health; many reported having access to racial-concordant (74 %) and language-concordant (86 %) healthcare services. Both poor spoken English proficiency and low health literacy were associated with poor self-rated health, independent of other significant correlates (unemployment, chronic health conditions, and having a primary doctor who was ethnic Chinese). Results revealed that spoken English proficiency and print health literacy are independent communication barriers that are directly associated with health status among elderly Chinese American immigrants. Access to racial- or language-concordant health care services did not appear to resolve these barriers. These findings underscore the importance of addressing both spoken and written healthcare communication needs among older Chinese American immigrants.

Engaging traditional medicine providers in colorectal cancer screening education in a chinese american community: a pilot study.

INTRODUCTION: Although colorectal cancer (CRC) screening is effective in preventing colon cancer, it remains underused by Asian Americans. Because Chinese Americans often use traditional Chinese medicine (TCM), we conducted a pilot study to explore the feasibility and acceptability of having TCM providers deliver education about CRC screening. METHODS: Four TCM providers (2 herbalists and 2 acupuncturists) were trained to deliver small-group educational sessions to promote CRC screening. Each provider recruited 15 participants aged 50 to 75. Participants completed a baseline survey on CRC-related knowledge, attitudes, and behaviors and then attended one 2-hour educational session delivered by the providers in Cantonese or Mandarin. Three months later, participants completed a postintervention survey. RESULTS: Sixty participants were recruited from the San Francisco Chinatown neighborhood. The average age was 62.4 years. Most participants had limited English proficiency (96.7%), annual household income less than $20,000 per year (60%), and low educational attainment (65.1% < high school education). At postintervention (n = 57), significant increases were found in having heard of CRC (from 52.6% to 79.0%, P < .001) and colon polyps (from 64.9% to 84.2%, P < .001). Knowledge regarding screening frequency recommendations also increased significantly. The rate of ever having received any CRC screening test increased from 71.9% to 82.5% (P <.001). The rate of up-to-date screening increased from 70.2% to 79.0% (P = .04). CONCLUSION: The findings suggest that TCM providers can be trained to deliver culturally and linguistically appropriate outreach on CRC screening within their community. Participants reached by TCM providers increased CRC knowledge and self-reported CRC screening.

Experiences and perceptions of medical discrimination among a multiethnic sample of breast cancer patients in the Greater San Francisco Bay Area, California.

OBJECTIVES: We conducted qualitative interviews with breast cancer survivors to identify themes related to institutional, personally mediated, and internalized discrimination in the medical setting. METHODS: We conducted 7 focus groups and 23 one-on-one interviews with a multiethnic sample of breast cancer survivors randomly selected from a population-based registry covering the Greater San Francisco Bay Area, California. RESULTS: Participants reported experiencing different forms of medical discrimination related to class, race, and language. Among African Americans, participants reported experiencing internalized discrimination and personal or group discrimination discrepancy-perceiving discrimination against them as a racial/ethnic group, yet not perceiving or discussing personal experiences of discrimination. Among Asian immigrants, participants reported experiencing institutional and personally mediated overt types of discrimination, including lack of access to quality and readily available translation services. Our results also indicated well-established coping mechanisms in response to discrimination experiences in both groups. CONCLUSIONS: Participants reported experiencing medical discrimination at all 3 levels, which may have deleterious health effects through the biopsychosocial stress pathway and through active coping mechanisms that could lead to delayed- or underutilization of the health care system to avoid discrimination.

Switching away from Cigarette Smoking with JUUL: Populations of Special Interest.

Objectives: In this study, we examined complete switching away from cigarettes across various medico-socio-demographic subpopulations of adult smokers who purchased a JUUL Starter Kit (JSK) electronic nicotine delivery system. Methods: We analyzed trajectories of smoking over 12 months in 17,986 adult smokers who purchased a JSK. Populations of special interest were characterized by race/ethnicity, income, diagnoses of potentially smoking-related illness (SRI), depression, and anxiety. Results: Across all 16 subgroups examined, a consistent pattern of trends was observed where complete switching increased, and dual-use decreased over time. Non-Hispanic Asian race/ethnicity, low income, diagnoses of potential SRI, depression, and anxiety were associated with significantly lower switching rates; however, complete switching rates at month 12 were near 50% for all groups, and surpassed the dual-use rates in all subgroups except for those with potential SRI. Conclusions: Substantial rates of complete switching were consistently achieved across all medico-socio-demographic subgroups 12 months following the purchase of the JSK. The potential benefits of switching with JUUL on smokers are likely to be experienced by a wide range of adult smokers.

Switching away from Cigarettes across 12 Months among Adult Smokers Purchasing the JUUL System.

Objectives: In this study, we assessed complete switching away from cigarette smoking among adult smokers who purchased a JUUL Starter Kit (JSK). Methods: Adult (age ≥ 21) established smokers (smoked ≥ 100 lifetime cigarettes) who purchased a JSK in 2018 were invited to complete online surveys 1, 2, 3, 6, 9 and 12 months after initial JSK purchase. Point prevalence of switching (no past 30-day smoking) was assessed at each follow-up. Repeated measures logistic regression models evaluated associations of sociodemographic factors, baseline smoking characteristics and time-varying JUUL System ("JUUL") use characteristics and switching across the 12-month period. Results: Respondents (N = 17,986) were 55.0% male, 78.3% white, mean age = 32.65 years (SD = 10.81), mean baseline cigarettes/day = 11.10 (SD = 8.16). The proportion self-reporting switching increased over time: one-month (27.2%[3718/13,650]), 2-month (36.4%[4926/13,533]), 3-month (41.0%[5434/13,257]), 6-month (46.6%[5411/11,621]), 9-month (49.4%[6017/12,186]), and 12-month (51.2%[6106/11,919]); 33.1% reported switching at both 9-month and 12-month follow-ups. In prospective analyses, smokers with lower cigarette dependence, shorter smoking history, lower cigarette consumption, more frequent JUUL use, greater satisfaction from initial JUUL use, and higher JUUL dependence were significantly more likely to switch. Conclusions: Rates of switching with JUUL increased over time. Over 50% of respondents reported complete switching away from cigarettes 12 months following purchase. Greater use of and dependence on JUUL predicted switching.

Cigarette Smoking Trajectories in Adult Former Smokers Using the JUUL System.

Objective: In this study, we assessed cigarette smoking over 12 months among adult former smokers who newly purchased a JUUL Starter Kit (JSK). Methods: Prevalence of past 30-day smoking and factors associated with smoking were assessed among adult (age ≥ 21) former established smokers, stratified as recent (quitting ≤ 12 months) and long-term quitters (> 12 months), who purchased a JSK and completed ≥ 1 of 6 follow-up assessments (N = 4786). Results: Recent quitters had higher rates (16.6%-19.9%) of past 30-day smoking than long-term quitters (6.4%-9.2%) across the 12-month period; smoking prevalence did not significantly increase over time in either subgroup. Few participants (6.5% of recent quitters, 2.8% of long-term quitters) reported smoking at both 9 and 12 months, a pattern that might indicate persistent smoking. Past 30-day JUUL use remained high (≥ 87%) across the 12 months. Participants who used JUUL more frequently were less likely to smoke. Conclusions: Among former smokers who purchased JUUL, prevalence rates of smoking were low and stable across the 12-month period, suggesting there was not a growing cohort of former smokers resuming smoking. Smoking was more common in recent quitters than long-term quitters. Greater use of JUUL was associated with reduced odds of smoking resumption.

Egocentric social networks, lifestyle behaviors, and body size in the Asian Community Health Initiative (CHI) cohort.

BACKGROUND: Social networks have been shown to influence lifestyle behaviors in non-Latinx white (NLW) populations. We examined their influence in Asian American, Native Hawaiian and Pacific Islander (AANHPI) women. METHODS: We included 477 AANHPI women from the Asian Community Health Initiative Study who provided egocentric (degree, density, composition) and epidemiologic (size, types of ties) social network data and data on alcohol intake, physical activity, smoking, diet, and body size. We used logistic regression to evaluate associations of social network measures and dichotomous outcomes, and linear regression for continuous outcomes. RESULTS: In multivariable-adjusted analyses, higher degree and/or proportion of friends were significantly related to higher Western diet, higher odds of any alcohol consumption, and lower odds of physical inactivity and body mass index (BMI)≥23 kg/m2. Additionally, a higher proportion of NLW in women's networks was related to lower Asian diet but also lower waist size. Community participation was related to higher Western diet and lower Asian diet. By contrast, degree and/or proportion of relatives were positively related to BMI, waist size and to a higher odds of BMI≥23 kg/m2 and of ever smoking 100 cigarettes. Being married was related to fewer alcoholic drinks per week and higher Asian diet. A higher density of relationships with frequent contact was also associated with higher Asian diet. CONCLUSIONS: AANHPI women with larger proportions of friends and NLWs in their networks had more Western health behaviors and smaller body size. Norms for health behaviors and body size may be influenced by the size, composition, and structure of social networks, relevant to chronic disease prevention.

Advancing Cancer Control in San Francisco: Cancer Screening in Under-Represented Populations.

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.

Do children and adults differ in survival from medulloblastoma? A study from the SEER registry.

Studies investigating whether adults have diminished survival from medulloblastoma (MB) compared with children have yielded conflicting results. We sought to determine in a population-based registry whether adults and children with MB differ in survival, and to examine whether dissimilar use of chemotherapy might contribute to any disparity. 1,226 MB subjects were identified using the Surveillance Epidemiology and End Results (SEER-9) registry (1973-2002) and survival analysis performed. MB was defined strictly to exclude non-cerebellar primitive neuro-ectodermal tumors. Patients were stratified by age at diagnosis: <3 years (infants), 3-17 years (children) and >or=18 years (adults). Because the SEER-9 registry lacks treatment data, a subset of 142 patients were identified using the San Francisco-Oakland SEER registry (1988-2003) and additional analyses performed. There was no significant difference in survival between children and adults with MB in either the SEER-9 (P = 0.17) or SFO (P = 0.89) cohorts but infants fared worse compared to both children (P < 0.01) and adults (P < 0.01). In the SFO sample, children and adults who received chemotherapy plus radiation therapy (XRT) did not differ in survival. Among patients treated with XRT alone, children showed increased survival (P = 0.04) compared with adults. Children and adults with MB do not differ with respect to overall survival, yet infants fare significantly worse. For children and adults with MB treated with both XRT and chemotherapy, we could not demonstrate a survival difference. Similar outcomes between adult and childhood MB may justify inclusion of adults in pediatric cooperative trials for MB.

Gender affects survival for medulloblastoma only in older children and adults: a study from the Surveillance Epidemiology and End Results Registry.

BACKGROUND: Males have a higher incidence of medulloblastoma (MB) than females, but the effect of gender on survival is unclear. Studies have yielded conflicting results, possibly due to small sample sizes or differences in how researchers defined MB. We aimed to determine the effect of gender on survival in MB using a large data set and strict criteria for defining MB. PROCEDURE: A sample of 1,226 subjects (763 males and 463 females) was identified from 1973 to 2002, using the Surveillance Epidemiology and End Results (SEER-9) registry. MB was strictly defined to exclude non-cerebellar embryonal tumors (primitive neuro-ectodermal tumors). Because children <3 years of age are known to have worse survival, patients were stratified by age <3 years at diagnosis (95 males, 82 females) and >3 years (668 males, 381 females). RESULTS: Overall, there was no significant difference in survival between males and females (log rank P = 0.22). However, among subjects >3 years, females had significantly greater survival than males (log rank P = 0.02). In children <3 years, there was a non-significant trend toward poorer survival in females (median survival: males 27 months, females 13 months; log rank P = 0.24). This interaction between age group and gender was statistically significant (P = 0.03). CONCLUSION: Females with MB have a survival advantage only in subjects >3 years. In children <3 years, females may even have poorer outcome. The effect of gender on survival and incidence in MB warrants additional biologic investigation, and may differ in very young children with MB.

Medulloblastoma incidence has not changed over time: a CBTRUS study.

Earlier studies have reported changes in the incidence of medulloblastoma (MB) but have conflicted, likely because of small sample size or misclassification of MB with primitive neuroectodermal tumor (PNET). The incidence of MB and PNET from 1985 to 2002 was determined from the Central Brain Tumor Registry of the United States, a large population-based cancer registry, using strict histologic and site codes. No statistically significant change in MB incidence was observed over the last 2 decades, but there was an increase in MB and PNET combined.

Perceptions of cervical cancer prevention on Twitter uncovered by different sampling strategies.

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.

The Role of Physician Recommendation in Colorectal Cancer Screening Receipt Among Immigrant Chinese Americans.

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.

Colorectal Cancer Screening and Chinese Americans: Efficacy of Lay Health Worker Outreach and Print Materials.

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.

Improving advance care planning for English-speaking and Spanish-speaking older adults: study protocol for the PREPARE randomised controlled trial.

INTRODUCTION: Advance care planning (ACP) is a process that allows patients to identify their goals for medical care. Traditionally, ACP has focused on completing advance directives; however, we have expanded the ACP paradigm to also prepare patients to communicate their wishes and make informed decisions. To this end, we created an ACP website called PREPARE (http://www.prepareforyourcare.org) to prepare diverse English-speaking and Spanish-speaking older adults for medical decision-making. Here, we describe the study protocol for a randomised controlled efficacy trial of PREPARE in a safety-net setting. The goal is to determine the efficacy of PREPARE to engage diverse English-speaking and Spanish-speaking older adults in a full spectrum of ACP behaviours. METHODS AND ANALYSIS: We include English-speaking and Spanish-speaking adults from an urban public hospital who are ≥55 years old, have ≥2 chronic medical conditions and have seen a primary care physician ≥2 times in the last year. Participants are randomised to the PREPARE intervention (review PREPARE and an easy-to-read advance directive) or the control arm (only the easy-to-read advance directive). The primary outcome is documentation of an advance directive and/or ACP discussion. Secondary outcomes include ACP behaviour change processes measured with validated surveys (eg, self-efficacy, readiness) and a broad range of ACP actions (eg, choosing a surrogate, identifying goals for care, discussing ACP with clinicians and/or surrogates). Using blinded outcome ascertainment, outcomes will be measured at 1 week and at 3, 6 and 12 months, and compared between study arms using mixed-effects logistic regression and mixed-effects linear, Poisson or negative binomial regression. ETHICS AND DISSEMINATION: This study has been approved by the appropriate Institutional Review Boards and is guided by input from patient and clinical advisory boards and a data safety monitoring board. The results of this study will be disseminated to academic and community stakeholders. TRIAL REGISTRATION NUMBERS: NCT01990235; NCT02072941; Pre-results.

Strategies for recruiting representative samples of Asian Americans for a population-based case-control study.

BACKGROUND: Data are limited on effective methods for recruiting persons, especially from ethnically diverse populations, into population-based studies. The goal of this study was to evaluate the variation among and representativeness of controls identified using multiple methods for a population-based case-control study of breast cancer among Asian Americans, Native Hawaiians and Pacific Islanders (AANHPIs) in the San Francisco Bay Area. METHODS: We used a unique combination of targeted recruitment strategies, including address-based sampling, community-based methods, and internet-based and media-based approaches for recruiting controls, frequency matched on age and ethnicity to a population-based sample of cases. To characterise the participating controls, we compared the distribution of sociodemographic characteristics and cancer risk factors between recruitment sources using χ(2) tests. To ensure that the controls we recruited were representative of the underlying at-risk population, we compared characteristics of the controls, by ethnicity and in aggregate, to data from the California Health Interview Survey (CHIS), and adjusted the relative mix of recruitment strategies throughout the study as needed to achieve representativeness. RESULTS: As expected, controls (n=483) recruited by any single method were not representative. However, when aggregated across methods, controls were largely representative of the underlying source population, as characterised by CHIS, with regard to the characteristics under study, including nativity, education, marital status and body mass index. CONCLUSIONS: A multimode approach using targeted recruitment strategies is an effective and feasible alternative to using a single recruitment method in identifying a representative, diverse control sample for population-based studies.