Publications by authors named "Amy E Leader"

30 Publications

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Insight into how patients with prostate cancer interpret and communicate genetic test results: implications for families.

J Community Genet 2022 Jul 22. Epub 2022 Jul 22.

Division of Population Science, Department of Medical Oncology and the Sidney Kimmel Cancer Center, Thomas Jefferson University, 834 Chestnut Street, Suite 314, Philadelphia, PA, 19107, USA.

Patients with prostate cancer (PCA) are increasingly being offered germline genetic testing for precision therapy, precision management, and clinical trial options. Genetic test results also have implications for family members. How men with PCA perceive their genetic test results and decide whether to share recommendations with family members is not well studied. We interviewed 12 patients who had PCA and genetic testing and received a positive variant/likely positive variant (PV/LPV) (n = 7) or a variant of unknown significance (VUS) (n = 5) result. The semi-structured interview had five sections: genetic testing experience, impact, and interpretation of the test result, deciding whether to communicate test results to family members, impact of communication on family members, and suggestions for genetic counselors and other PCA patients. Interviews were transcribed verbatim and thematic analysis was completed using NVivo software v10. Receipt of PV/LPV or VUS genetic test results was not as emotional as receiving the diagnosis of PCA itself. Seven of the 12 participants chose to share their test results with all relevant family members, 4 chose to share with select family members, and one chose to not disclose to any family members. The majority of family members who were aware of participants' genetic results have not undergone cascade genetic testing or sought cancer screening. Participants with PCA and positive or VUS genetic test results typically share their results with at least immediate family members, but some communication barriers exist. Understanding the best way to provide actionable and relevant information about genetic testing to family members remains a challenge.
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http://dx.doi.org/10.1007/s12687-022-00603-1DOI Listing
July 2022

Examining the Association of Food Insecurity and Being Up-to-Date for Breast and Colorectal Cancer Screenings.

Cancer Epidemiol Biomarkers Prev 2022 05;31(5):1017-1025

Health Behavior and Policy, Massey Cancer Center, Virginia Commonwealth University, Richmond, Virginia.

Background: Food insecurity (FI) has been associated with poor access to health care. It is unclear whether this association is beyond that predicted by income, education, and health insurance. FI may serve as a target for intervention given the many programs designed to ameliorate FI. We examined the association of FI with being up-to-date to colorectal cancer and breast cancer screening guidelines.

Methods: Nine NCI-designated cancer centers surveyed adults in their catchment areas using demographic items and a two-item FI questionnaire. For the colorectal cancer screening sample (n = 4,816), adults ages 50-75 years who reported having a stool test in the past year or a colonoscopy in the past 10 years were considered up-to-date. For the breast cancer screening sample (n = 2,449), female participants ages 50-74 years who reported having a mammogram in the past 2 years were up-to-date. We used logistic regression to examine the association between colorectal cancer or breast cancer screening status and FI, adjusting for race/ethnicity, income, education, health insurance, and other sociodemographic covariates.

Results: The prevalence of FI was 18.2% and 21.6% among colorectal cancer and breast cancer screening participants, respectively. For screenings, 25.6% of colorectal cancer and 34.1% of breast cancer participants were not up-to-date. In two separate adjusted models, FI was significantly associated with lower odds of being up-to-date with colorectal cancer screening [OR, 0.7; 95% confidence interval (CI), 0.5-0.99)] and breast cancer screening (OR, 0.6; 95% CI, 0.4-0.96).

Conclusions: FI was inversely associated with being up-to-date for colorectal cancer and breast cancer screening.

Impact: Future studies should combine FI and cancer screening interventions to improve screening rates.
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http://dx.doi.org/10.1158/1055-9965.EPI-21-1116DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9135358PMC
May 2022

Assessing the Coverage of US Cancer Center Primary Catchment Areas.

Cancer Epidemiol Biomarkers Prev 2022 05;31(5):955-964

Department of Cancer Biology, Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, Pennsylvania.

Background: Cancer centers are expected to engage communities and reduce the burden of cancer in their catchment areas. However, the extent to which cancer centers adequately reach the entire US population is unknown.

Methods: We surveyed all members of the Association of American Cancer Institutes (N = 102 cancer centers) to document and map each cancer center's primary catchment area. Catchment area descriptions were aggregated to the county level. Catchment area coverage scores were calculated for each county and choropleths generated representing coverage across the US. Similar analyses were used to overlay US population density, cancer incidence, and cancer-related mortality compared with each county's cancer center catchment area coverage.

Results: Roughly 85% of US counties were included in at least one cancer center's primary catchment area. However, 15% of US counties, or roughly 25 million Americans, do not reside in a catchment area. When catchment area coverage was integrated with population density, cancer incidence, and cancer-related mortality metrics, geographical trends in both over- and undercoverage were apparent.

Conclusions: Geographic gaps in cancer center catchment area coverage exist and may be propagating cancer disparities. Efforts to ensure coverage to all Americans should be a priority of cancer center leadership.

Impact: This is the first known geographic analysis and interpretation of the primary catchment areas of all US-based cancer centers and identifies key geographic gaps important to target for disparities reduction. See related commentary by Lieberman-Cribbin and Taioli, p. 949.
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http://dx.doi.org/10.1158/1055-9965.EPI-21-1097DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081121PMC
May 2022

Predictors of Population Awareness of Cancer Genetic Tests: Implications for Enhancing Equity in Engaging in Cancer Prevention and Precision Medicine.

JCO Precis Oncol 2021 3;5. Epub 2021 Nov 3.

Division of Population Science, Department of Medical Oncology, Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, PA.

Racial and ethnic disparities in genetic awareness (GA) can diminish the impact of personalized cancer treatment and risk assessment. We assessed factors predictive of GA in a diverse population-based sample to inform awareness strategies and reduce disparities in genetic testing.

Methods: A cross-sectional study was conducted from July 2019 to August 2019, with the survey e-mailed to 7,575 adult residents in southeastern Pennsylvania and New Jersey. Constructs from National Cancer Institute Health Information and National Trends Survey assessed cancer attitudes or beliefs, health literacy, and numeracy. Characteristics were summarized with mean ± standard deviation for numeric variables and frequency counts and percentages for categorical variables. Comparison of factors by race or ethnicity (non-Hispanic White and non-Hispanic Black) and sex was conducted by -tests, chi-square, or Fisher's exact tests. Multivariate logistic regression models were conducted to identify factors independently predictive of GA.

Results: Of 1,557 respondents, data from 940 respondents (the mean age was 45 ± 16.2 years, 35.5% males, and 23% non-Hispanic Blacks) were analyzed. Factors associated with higher GA included female gender ( < .001), non-Hispanic White ( < .001), college education ( < .001), middle-higher income ( < .001), stronger belief in genetic basis of cancer ( < .001), lower cancer fatalism ( = .004), motivation for cancer information ( < .001), and higher numeracy ( = .002). On multivariate analysis, college education (odds ratio [OR] 1.79; 95% CI, 1.22 to 2.63), higher motivation for cancer information (OR 1.56; 95% CI, 1.17 to 2.09), stronger belief in genetics of cancer (OR 2.21; 95% CI, 1.48 to 3.30), and higher medical literacy (OR 2.21; 95% CI, 1.34 to 3.65) predicted greater GA.

Conclusion: This population-based study conducted in the precision medicine era identified novel modifiable factors, importantly perceptions of cancer genetics and medical literacy, as predictive of GA, which informs strategies to promote equitable engagement in genetically based cancer care.
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http://dx.doi.org/10.1200/PO.21.00231DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8585288PMC
March 2022

Development of Personas to Communicate Narrative-Based Information About the HPV Vaccine on Twitter.

Front Digit Health 2021 4;3:682639. Epub 2021 Aug 4.

Division of Population Science, Department of Medical Oncology, Thomas Jefferson University, Philadelphia, PA, United States.

Personas are based on real-life typologies of people that can be used to create characters and messages to communicate important health information through relatable narrative storylines. Persona development is data-driven and can involve multiple phases of formative research and evaluation; however, personas are largely underutilized in digital health research. The purpose of this study was to create and document persona development to deliver narrative-focused health education for parents on Twitter with the goal of increasing uptake of HPV vaccination among adolescents. Leveraging data from a mixed-method study conducted in the U.S. with a diverse population of parents with adolescents ages 9-14, we used both qualitative and quantitative data (e.g., the National Immunization Survey-Teen, focus groups, and social media) to create personas. These data sources were used to identify and develop key characteristics for personas to reflect a range of parents and their diverse understandings and experiences related to HPV vaccination. A parent advisory board provided insight and helped refine persona development. Four personas emerged and were characterized as the (1) Informed Altruist, (2) Real Talker, (3) Information Gatherer, and (4) Supporter. Characteristics differed across personas and provided insights into targeted narrative strategies. Described attributes included demographics, psychographics, communication style, vaccine goals and aspirations, vaccine challenges and frustrations, and vaccine hesitancy. This work demonstrates how multiple data sources can be used to create personas to deliver social media messages that can address the diverse preferences and needs of parents for HPV vaccine information. With increasing usage of social media for health information among parents, it is important for researchers to consider marketing and design thinking to create health communication messages that resonate with audiences.
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http://dx.doi.org/10.3389/fdgth.2021.682639DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8521793PMC
August 2021

Gaps in Public Awareness About BRCA and Genetic Testing in Prostate Cancer: Social Media Landscape Analysis.

JMIR Cancer 2021 Sep 20;7(3):e27063. Epub 2021 Sep 20.

Department of Medical Oncology, Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, PA, United States.

Background: Genetic testing, particularly for BRCA1/2, is increasingly important in prostate cancer (PCa) care, with impact on PCa management and hereditary cancer risk. However, the extent of public awareness and online discourse on social media is unknown, and presents opportunities to identify gaps and enhance population awareness and uptake of advances in PCa precision medicine.

Objective: The objective of this study was to characterize activity and engagement across multiple social media platforms (Twitter, Facebook, and YouTube) regarding BRCA and genetic testing for PCa compared with breast cancer, which has a long history of public awareness, advocacy, and prominent social media presence.

Methods: The Symplur Signals online analytics platform was used to obtain metrics for tweets about (1) #BRCA and #breastcancer, (2) #BRCA and #prostatecancer, (3) #genetictesting and #breastcancer, and (4) #genetictesting and #prostatecancer from 2016 to 2020. We examined the total number of tweets, users, and reach for each hashtag, and performed content analysis for a subset of tweets. Facebook and YouTube were queried using analogous search terms, and engagement metrics were calculated.

Results: During a 5-year period, there were 10,005 tweets for #BRCA and #breastcancer, versus 1008 tweets about #BRCA and #prostatecancer. There were also more tweets about #genetictesting and #breastcancer (n=1748), compared with #genetic testing and #prostatecancer (n=328). Tweets about genetic testing (12,921,954) and BRCA (75,724,795) in breast cancer also had substantially greater reach than those about PCa (1,463,777 and 4,849,905, respectively). Facebook groups and pages regarding PCa and BRCA/genetic testing had fewer average members, new members, and new posts, as well as fewer likes and followers, compared with breast cancer. Facebook videos had more engagement than YouTube videos across both PCa and breast cancer content.

Conclusions: There is substantially less social media engagement about BRCA and genetic testing in PCa compared with breast cancer. This landscape analysis provides insights into strategies for leveraging social media platforms to increase public awareness about PCa germline testing, including use of Facebook to share video content and Twitter for discussions with health professionals.
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http://dx.doi.org/10.2196/27063DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8550715PMC
September 2021

From the Community to the Bench and Back Again: The Value of Patient and Community Engagement in Cancer Research.

Cancer Discov 2021 09;11(9):2135-2138

Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, Pennsylvania.

Currently, patients and community members have more frequent interaction with clinical and population scientists than basic scientists, leading to gaps in their engagement across the cancer research continuum. Engaging patients and community members in all types of cancer research can bring personal experiences and societal factors to the forefront, informing scientists about these concerns and leading to research that is more responsive to patient and community needs. Engaging patients with cancer and community members as partners in research helps ensure that the scientific evidence generated is useful to patients and-more importantly-trusted by patients. This bidirectional engagement between patients/community members and research investigators fosters a collaborative and ethical foundation for scientific discovery. Although community-engaged research has been in existence for decades, more recent attention by national organizations to embed patients with cancer and community members into the research process has accelerated the importance of these efforts. Here, we describe the importance of patient and community engagement (PCE) in cancer research. We outline key principles in undertaking PCE in cancer research, provide a framework for PCE throughout the cancer research continuum, review metrics for evaluating the effectiveness of PCE in cancer research, and share opportunities for PCE in cancer research going forward.
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http://dx.doi.org/10.1158/2159-8290.CD-21-0693DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8425602PMC
September 2021

Digital Literacy at an Urban Cancer Center: Implications for Technology Use and Vulnerable Patients.

JCO Clin Cancer Inform 2021 08;5:872-880

Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, PA.

Purpose: eHealth literacy, or the ability to seek, find, understand, and appraise health information from electronic sources, has become increasingly relevant in the era of COVID-19, when so many aspects of patient care became dependent on technology. We aimed to understand eHealth literacy among a diverse sample of patients with cancer and discuss ways for health systems and cancer centers to ensure that all patients have access to high-quality care.

Methods: A cross-sectional survey of patients with cancer and caregivers was conducted at an NCI-designated cancer center to assess access to the Internet, smartphone ownership, use of mobile apps, willingness to engage remotely with the health care team, and use of the patient portal. Descriptive statistics and bivariate analyses were used to assess frequencies and significant differences between variables.

Results: Of 363 participants, 55% (n = 201) were female, 71% (n = 241) identified as non-Hispanic White, and 29% (n = 85) reported that their highest level of education was a high school diploma. Most (90%, n = 323) reported having access to the Internet and most (82%, n = 283) reported owning a smartphone. Younger patients or those with a college degree were significantly more likely to own a smartphone, access health information online, know how to download an app on their own, have an interest in communicating with their health care team remotely, or have an account on the electronic patient portal.

Conclusion: As cancer centers increasingly engage patients through electronic and mobile applications, patients with low or limited digital literacy may be excluded, exacerbating current cancer health disparities. Patient-, provider- and system-level technology barriers must be understood and mitigated.
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http://dx.doi.org/10.1200/CCI.21.00039DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8807016PMC
August 2021

Identifying HPV vaccine narrative communication needs among parents on social media.

Prev Med Rep 2021 Sep 7;23:101488. Epub 2021 Jul 7.

Division of Population Science, Department of Medical Oncology, Thomas Jefferson University, United States.

Sharing personal experiences is an important communication strategy in public health, including vaccination. This study sought to understand if parents would be receptive to learning about the HPV vaccine from other parent experiences, and what format this information should take on social media. In May 2020, we conducted a qualitative study of six online focus groups across the U.S. with parents (n = 48) of children ages 9-14. Using a text-based discussion format, we discussed their experiences getting information about the HPV vaccine and using Twitter to learn about health topics. Four coders structured qualitative findings by themes including content, delivery, and source of information. An accompanying survey was used to describe participant Twitter use and HPV vaccine knowledge and attitudes. The average participant age was 44.6 years old, 63% were mothers, and the majority had high HPV vaccine knowledge. Parents indicated that they want to hear from other parents about their experiences with the HPV vaccine. However, it was hard to know where to find this information. When experiences are shared on social media, the negative ones are more memorable and more personal. Parents thought Twitter could be an important space to communicate about the HPV vaccine if it was done in a credible, verifiable, and authentic way. Parents want to learn about the HPV vaccine through other parent experiences, especially when this aligns with science supporting the vaccine. Public health and medical communities must embrace this mix of evidence and lived experiences to deliver and discuss health information.
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http://dx.doi.org/10.1016/j.pmedr.2021.101488DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8281599PMC
September 2021

Barriers and facilitators of germline genetic evaluation for prostate cancer.

Prostate 2021 08 31;81(11):754-764. Epub 2021 May 31.

Division of Population Science, Medical Oncology, Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, Pennsylvania, USA.

Background: Genetic counseling and germline testing have an increasingly important role for patients with prostate cancer (PCa); however, recent data suggests they are underutilized. Our objective was to perform a qualitative study of the barriers and facilitators of germline genetic evaluation among physicians who manage PCa.

Methods: We conducted semi-structured interviews with medical oncologists, radiation oncologists, and urologists from different U.S. practice settings until thematic saturation was achieved at n = 14. The interview guide was based on the Tailored Implementation in Chronic Diseases Framework to identify key determinants of practice. Interview transcripts were independently coded by ≥2 investigators using a constant comparative method.

Results: The decision to perform or refer for germline genetic evaluation is affected by factors at multiple levels. Although patient factors sometimes play a role, the dominant themes in the decision to conduct germline genetic evaluation were at the physician and organizational level. Physician knowledge, coordination of care, perceptions of the guidelines, and concerns about cost were most frequently discussed as the main factors affecting utilization of germline genetic evaluation.

Conclusions: There are currently numerous barriers to implementation of germline genetic evaluation for PCa. Efforts to expand physician education, to develop tools to enhance genetics in practice, and to facilitate coordination of care surrounding genetic evaluation are important to promote guideline-concordant care.
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http://dx.doi.org/10.1002/pros.24172DOI Listing
August 2021

Catch-up HPV Vaccination and Subsequent Uptake of Papanicolaou Testing in A State-mandated Health System.

Cancer Prev Res (Phila) 2021 04 9;14(4):415-420. Epub 2021 Mar 9.

Thomas Jefferson University College of Population Health, Philadelphia, Pennsylvania.

The objective of this study was to evaluate the association between human papillomavirus (HPV) vaccination and uptake of initial Papanicolaou (Pap) testing in Israel among women not previously vaccinated through the national immunization program. In this retrospective cohort we used health provider records of vaccinations and cancer screening attendance among female members of a state-mandated health provider in Israel (Maccabi Healthcare Services, MHS). All eligible female members ( = 20,904) immunized with at least one dose of HPV vaccine from the date of its introduction in Israel (June 2007) until December 31, 2018 were individually matched with nonvaccinated MHS members on one to one ratio by year of birth, residential area socioeconomic level, and district of residence. Data on the uptake of Pap smears until December 2018 were extracted from MHS central datasets, and the number of Pap smears for each woman during the study period was counted. During the observed follow-up period (mean, 6.6 years; interquartile range, 3.9-8.7 year), the cumulative uptake rate of Pap testing in vaccinated women (26.8%) was significantly ( < 0.001) greater than among unvaccinated (22.4%) women. In a multivariable model, HPV vaccination was associated with an HR of 1.34 [95% confidence interval (CI), 1.29-1.41] to perform Pap testing. Our findings suggest that uptake of catch-up HPV vaccine was positively correlated to increased uptake of Pap testing. PREVENTION RELEVANCE: We found that catch-up HPV vaccination was associated with increased attention to long-term cervical screening attendance. Whereas, those who are not vaccinated and unprotected from HPV, are more likely to abstain from secondary prevention screening tests too and further increase their cervical cancer risk.
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http://dx.doi.org/10.1158/1940-6207.CAPR-20-0570DOI Listing
April 2021

Understanding the messages and motivation of vaccine hesitant or refusing social media influencers.

Vaccine 2021 01 3;39(2):350-356. Epub 2020 Dec 3.

109 Casa Bay Place, St Augustine, FL 32080, United States.

Background: While anti-vaccine messages on social media have been studied for content, reach, and effectiveness, less is known about those who create and promote the messages. Online influencers, or 'everyday people who are influential within their online social networks', are viewed as trusted voices who are often making similar life decisions as their followers. Therefore, their experiences with and perspectives on health issues can be persuasive.

Methods: We collaborated with a formal network of online influencers to interview, using a semi-structured interview guide, vaccine hesitant influencer mothers about their views on vaccination; their process for developing health-related social media content; their motivation to promote anti-vaccine messages; and their opinions on current vaccination messaging. Prescreening ensured a diverse sample by race/ethnicity, age, education, number of children, and geographic residence. Interviews occurred by telephone, were audio recorded, and transcribed. Themes were generated independently by two coders using a deductive coding approach.

Results: We interviewed 15 online influencer mothers from across the U.S. (average age 39 years old; all married; 13 Caucasian, 1 African American, 1 Hispanic). In some capacity, 5 of the 15 wrote about vaccination on their blog. Those who chose not to post anti-vaccine content did so for fear of alienating followers or having their platform be the site of combative discourse among readers. When researching their social media posts, the influencers did not trust mainstream sources of health information and relied on alternative sources and search engines.

Implications: This exploratory study interviewed influential mothers who have the ability to spread anti-vaccine messages on social media. While most do not contribute to the anti-vaccine sentiment, understanding the motivation and practices of those that do assists the public health community in better understanding the online vaccination communication environment, leading to more effective messages to counterbalance anti-vaccine content on social media.
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http://dx.doi.org/10.1016/j.vaccine.2020.11.058DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8152170PMC
January 2021

Dimensions of Misinformation About the HPV Vaccine on Instagram: Content and Network Analysis of Social Media Characteristics.

J Med Internet Res 2020 12 3;22(12):e21451. Epub 2020 Dec 3.

Division of Population Science, Department of Medical Oncology, Thomas Jefferson University, Philadelphia, PA, United States.

Background: The human papillomavirus (HPV) vaccine is a major advancement in cancer prevention and this primary prevention tool has the potential to reduce and eliminate HPV-associated cancers; however, the safety and efficacy of vaccines in general and the HPV vaccine specifically have come under attack, particularly through the spread of misinformation on social media. The popular social media platform Instagram represents a significant source of exposure to health (mis)information; 1 in 3 US adults use Instagram.

Objective: The objective of this analysis was to characterize pro- and anti-HPV vaccine networks on Instagram, and to describe misinformation within the anti-HPV vaccine network.

Methods: From April 2018 to December 2018, we collected publicly available English-language Instagram posts containing hashtags #HPV, #HPVVaccine, or #Gardasil using Netlytic software (n=16,607). We randomly selected 10% of the sample and content analyzed relevant posts (n=580) for text, image, and social media features as well as holistic attributes (eg, sentiments, personal stories). Among antivaccine posts, we organized elements of misinformation within four broad dimensions: 1) misinformation theoretical domains, 2) vaccine debate topics, 3) evidence base, and 4) health beliefs. We conducted univariate, bivariate, and network analyses on the subsample of posts to quantify the role and position of individual posts in the network.

Results: Compared to provaccine posts (324/580, 55.9%), antivaccine posts (256/580, 44.1%) were more likely to originate from individuals (64.1% antivaccine vs 25.0% provaccine; P<.001) and include personal narratives (37.1% vs 25.6%; P=.003). In the antivaccine network, core misinformation characteristics included mentioning #Gardasil, purporting to reveal a lie (ie, concealment), conspiracy theories, unsubstantiated claims, and risk of vaccine injury. Information/resource posts clustered around misinformation domains including falsification, nanopublications, and vaccine-preventable disease, whereas personal narrative posts clustered around different domains of misinformation, including concealment, injury, and conspiracy theories. The most liked post (6634 likes) in our full subsample was a positive personal narrative post, created by a non-health individual; the most liked post (5604 likes) in our antivaccine subsample was an informational post created by a health individual.

Conclusions: Identifying characteristics of misinformation related to HPV vaccine on social media will inform targeted interventions (eg, network opinion leaders) and help sow corrective information and stories tailored to different falsehoods.
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http://dx.doi.org/10.2196/21451DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7746500PMC
December 2020

Characterizing HPV Vaccine Sentiments and Content on Instagram.

Health Educ Behav 2019 12;46(2_suppl):37-48

Drexel University, Philadelphia, PA, USA.

With its growing popularity, inclusion of image and text, and user-friendly interface, Instagram is uniquely positioned for exploring health behaviors and sources and types of informational exposure related to the human papillomavirus (HPV) vaccine. To characterize public Instagram posts about the HPV vaccine and quantify the impact of sentiment and context on engagement via likes. Using Netlytic, 3,378 publicly available English-language posts were collected using the search terms "#HPV," "#HPVVaccine," and "#Gardasil." We randomly selected 1,200 posts to content analyze. Our final analytic sample included 360 posts after excluding posts whose links were no longer active ( = 221) or that were not relevant ( = 619). A higher proportion of posts were pro-vaccine (55.8%) than anti-vaccine (42.2%). Pro-HPV vaccination posts were liked significantly less than anti-vaccination posts (24 vs. 86 likes; < .001). More posts contained actionable information/resources (63.9%) than personal narrative elements (36.1%). Less than one in three posts (30.0%) came from health-related sources. Pro-vaccine posts were more prevalent on Instagram, and anti-vaccine posts had higher engagement and typically included misleading information about the HPV vaccine. Personal narratives skewed toward anti-vaccine sentiments and most were produced by individual users. Pro-vaccine narratives portrayed individuals who received the vaccine, but provided limited details on vaccine experiences, starkly contrasting with the depth of details in anti-vaccine personal narrative posts. On Instagram, individuals and organizations have an opportunity to promote HPV vaccination by continuing to provide informational resources in addition to creating more narrative-style posts.
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http://dx.doi.org/10.1177/1090198119859412DOI Listing
December 2019

Validity of the screener and opioid assessment for patients with pain-revised (SOAPP-R) in patients with cancer.

J Opioid Manag 2019 Jul/Aug;15(4):272-274

Department of Medical Oncology, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania.

Objective: To determine the utility of the screener and opioid assessment for patients with pain-revised (SOAPP-R) for patients with cancer-related pain.

Design: The authors performed a retrospective analysis of cancer patients screened with the SOAPP-R. Opiate abuse was determined using a combination of urine drug screens and analysis of patients' electronic medical records.

Setting/patients: Patients who were seen at a palliative care clinic presenting with pain or needing an opioid prescription at an academic medical center with any type of cancer were screened using the SOAPP-R (N = 69).

Outcome Measures: Aberrant opioid-related behavior was determined using a combination of provider notes and urine drug screens.

Results: A positive SOAPP-R score (⩾18) was observed in 27 participants (39.1 percent). The sensitivity and specificity of the SOAPP-R in the study population was 0.75 and 0.80, respectively.

Conclusions: The SOAPP-R, in its current form, may have value in screening patients with cancer for substance abuse. Incorporation of the screening tool in palliative and oncology settings may help reduce opioid abuse in cancer patients.
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http://dx.doi.org/10.5055/jom.2019.0512DOI Listing
October 2019

Exploring Asian Indian views about cancer and participation in cancer research: an evaluation of a culturally tailored educational intervention.

J Community Genet 2020 Apr 14;11(2):193-203. Epub 2019 Sep 14.

Division of Population Science, Department of Medical Oncology, Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, PA, 19107, USA.

Asian Indians (AIs) are a growing population in the United States (US) with increased cancer incidence and mortality. However, screening rates among this population are low, and the population has been underrepresented in clinical research. This pilot study aims to address gaps in the literature in order to understand if a culturally tailored educational intervention will improve knowledge, risk perceptions, and awareness of cancer risk assessments among AIs. We delivered an educational intervention comprised of culturally tailored case studies describing risk factors for developing cancer in both males and females. We assessed knowledge gaps about cancer risk and genetic testing, cancer risk perceptions, and willingness to participate in medical research studies, pre- and post-intervention. Among 23 participants, knowledge of genetic testing use and screening recommendations significantly improved post-intervention, with increased willingness to discuss cancer with family members, participate in medical research, and undergo genetic testing for cancer risk assessment. However, findings at the 1-month follow-up time did not show significant changes, except for one knowledge item. Culturally tailored educational interventions, delivered in a community setting, can influence knowledge and risk perceptions about cancer risk and genetics among AIs. Our findings lay the groundwork to continue educational efforts in the area of cancer risk and genetic testing in the AI population, a growing population that has been understudied in the US.
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http://dx.doi.org/10.1007/s12687-019-00436-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7062964PMC
April 2020

Using Facebook to reach adolescents for human papillomavirus (HPV) vaccination.

Vaccine 2018 09 29;36(40):5955-5961. Epub 2018 Aug 29.

Philadelphia Department of Public Health, Philadelphia, PA, United States.

Background: Despite numerous public health campaigns to promote the human papillomavirus (HPV) vaccine, uptake among adolescents in the US has remained below the Healthy People 80% goal for 3-dose completion. The Philadelphia Department of Public Health (PDPH) used an innovative social media strategy to raise awareness and increase rates of HPV immunization initiation and series completion among adolescents.

Methods: Between June 2012 and July 2013, PDPH launched a Facebook campaign to target Philadelphia adolescents (13-18 years) with specific messages about HPV immunization benefits and announce opportunities for vaccination. Six distinct advertising campaigns ran for two-week intervals. Facebook metrics and vaccine clinic data were used to track success. Reminder-recall letters were also sent to adolescents as part of the campaign.

Results: On average, each advertising campaign reached 155,110 adolescents and engaged 2106 adolescents. The advertising campaigns that focused on HPV disease risk and local resources were the most successful in engaging adolescents. During advertising campaigns, there were sizeable increases in both reach and engagement compared to non-campaign periods. Overall, 3400 adolescents became fans of the campaign and 176 doses of HPV vaccine were administered to 152 adolescents. Only 2 adolescents were vaccinated as a result of the Facebook campaign while the rest were prompted by reminder-recall letters or through community events.

Conclusion: The campaign was well-received, far-reaching and generated awareness and conversations among adolescents. However, the campaign did not appear to be a sufficient driver for HPV uptake even when common barriers to HPV immunization were minimized.
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http://dx.doi.org/10.1016/j.vaccine.2018.08.060DOI Listing
September 2018

Examining relationships between age at diagnosis and health-related quality of life outcomes in prostate cancer survivors.

BMC Public Health 2018 Aug 23;18(1):1060. Epub 2018 Aug 23.

Division of Population Science, Department of Medical Oncology, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, USA.

Background: Patient reports of health related quality of life can provide important information about the long-term impact of prostate cancer. Because patient symptoms and function can differ by age of the survivor, the aim of our study was to examine patient-reported quality of life and prostate symptoms by age at diagnosis among a registry of Dutch prostate cancer survivors.

Methods: A population of 617 individuals from the Patient Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship (PROFILES) database was surveyed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30) and prostate symptom (EORTC QLQ-PR25) scales. Age at diagnosis was the main independent variable, with three age categories: 60 years and younger, 61-70 years, and 71 years and older. Dependent variables were the EORTC-QLQ-C30 and EORTC QLQ-PR25 scales, divided into positive and negative outcomes. Positive measures of health-related quality of life included global health, physical functioning, role functioning, emotional functioning, cognitive functioning, and social functioning. Negative outcomes included fatigue, nausea, pain, dyspnea, insomnia, appetite, constipation, and diarrhea. We also assessed sexual activity, and urinary, bowel and hormonal symptoms. Descriptive analyses included frequencies with chi-square tests and medians with Kruskal-Wallis tests. Multivariable adjusted analyses were conducted by median regression modeling.

Results: Among the numerous scales showing some unadjusted association with age group, only two scales demonstrated significant differences between prostate cancer patients age 71+ compared to the youngest group (age < 61) after multivariable adjustment. On average, the oldest patients experienced an 8.3-point lower median physical functioning score (β = - 8.3; 95% CI = - 13.9, - 2.8; p = 0.003) and a 16.7-point lower median sexual activity score (β = - 16.7; 95% CI = - 24.7, - 8.6; p < 0.001) while controlling for BMI, marital status, time since diagnosis, comorbidities (heart condition), Gleason score, and treatment (prostatectomy).

Conclusions: Results suggest that patient age at diagnosis should be considered among factors that contribute to health-related quality of life outcomes for prostate cancer survivors.

Implications For Cancer Survivors: A possible reevaluation of screening recommendations may be appropriate to acknowledge age as a factor contributing to health-related quality of life outcomes for prostate cancer survivors.
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http://dx.doi.org/10.1186/s12889-018-5976-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6108139PMC
August 2018

A Prostate Cancer Composite Score to Identify High Burden Neighborhoods.

Prev Med 2018 07 4;112:47-53. Epub 2018 Apr 4.

Division of Population Sciences, Department of Medical Oncology, Thomas Jefferson University, Philadelphia, PA, United States.

This study presents a novel geo-based metric to identify neighborhoods with high burdens of prostate cancer, and compares this metric to other methods to prioritize neighborhoods for prostate cancer interventions. We geocoded prostate cancer patient data (n = 10,750) from the Pennsylvania cancer registry from 2005 to 2014 by Philadelphia census tract (CT) to create standardized incidence ratios (SIRs), mortality ratios (SMRs), and mean prostate cancer aggressiveness. We created a prostate cancer composite (PCa composite) variable to describe CTs by mean-centering and standard deviation-scaling the SMR, SIR, and mean aggressiveness variables and summing them. We mapped CTs with the 25 highest PCa composite scores and compared these neighborhoods to CTs with the 25 highest percent African American residents and the 25 lowest median household incomes. The mean PCa composite score among the 25 highest CTs was 4.65. Only seven CTs in Philadelphia had both one of the highest PCa composite scores and the highest percent African American residents. Only five CTs had both the highest PCa composites and the lowest median incomes. Mean PCa composite scores among CTs with the highest percent African American residents and lowest median incomes were 2.08 and 1.19, respectively. The PCa composite score is an accurate metric for prioritizing neighborhoods based on burden. If neighborhoods were prioritized based on percent African American or median income, priority neighborhoods would have been very different and not based on PCa burden. These methods can be utilized by public health decision-makers when tasked to prioritize and select neighborhoods for cancer interventions.
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http://dx.doi.org/10.1016/j.ypmed.2018.04.003DOI Listing
July 2018

Exploring Asian Indian and Pakistani views about cancer and participation in cancer genetics research: toward the development of a community genetics intervention.

J Community Genet 2018 Jan 28;9(1):27-35. Epub 2017 Jun 28.

Department of Medical Oncology, Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, PA, USA.

Cancer is a leading cause of mortality among the three million Asian Indian/Pakistanis (AIPs) in the USA. AIPs have traditionally been underrepresented in cancer-related research, although reasons remain largely unexplored. We sought to understand AIP's awareness and perceptions of cancer to improve their participation in risk assessment and cancer genetics research. Four focus groups, stratified by gender and birthplace (US-born vs. foreign-born), were held at an AIP cultural center. Discussions focused on knowledge and awareness of cancer risk; how AIP culture influences cancer perceptions; access to health care services for cancer screening, diagnosis, or treatment; and willingness to or experiences with participating in cancer genetics research. Sessions were audio-recorded, transcribed verbatim, and content analyzed using NVivo11 for dominant themes. Thirty-two AIP adults participated in a focus group. Information on family cancer history is challenging to obtain due to the desire for privacy, cancer stigma, and loss of medical records. Interest in genetic testing for cancer risk was mixed: some were in favor of knowing their personal risk, yet many noted that future generations in their family would benefit more by knowing their risk. Participants felt that the AIP community has largely been overlooked in recruitment efforts for research studies. Recommendations for improving recruitment efforts included partnering with community events and festivities, posting culturally and linguistically relevant recruitment materials, and focusing on population-wide health improvement. Understanding the culture and perceptions of AIPs, separate from Asian Americans at large, will allow for more tailored approaches for including this population in cancer genetics research.
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http://dx.doi.org/10.1007/s12687-017-0312-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5752649PMC
January 2018

Decision Support and Shared Decision Making About Active Surveillance Versus Active Treatment Among Men Diagnosed with Low-Risk Prostate Cancer: a Pilot Study.

J Cancer Educ 2018 02;33(1):180-185

Department of Urology, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, USA.

This study aimed to explore the effects of a decision support intervention (DSI) and shared decision making (SDM) on knowledge, perceptions about treatment, and treatment choice among men diagnosed with localized low-risk prostate cancer (PCa). At a multidisciplinary clinic visit, 30 consenting men with localized low-risk PCa completed a baseline survey, had a nurse-mediated online DS session to clarify preference for active surveillance (AS) or active treatment (AT), and met with clinicians for SDM. Participants also completed a follow-up survey at 30 days. We assessed change in treatment knowledge, decisional conflict, and perceptions and identified predictors of AS. At follow-up, participants exhibited increased knowledge (p < 0.001), decreased decisional conflict (p < 0.001), and more favorable perceptions of AS (p = 0.001). Furthermore, 25 of the 30 participants (83 %) initiated AS. Increased family and clinician support predicted this choice (p < 0.001). DSI/SDM prepared patients to make an informed decision. Perceived support of the decision facilitated patient choice of AS.
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http://dx.doi.org/10.1007/s13187-016-1073-7DOI Listing
February 2018

The association between neighborhood social capital and cancer screening.

Am J Health Behav 2013 Sep;37(5):683-92

Division of Population Science, Department of Medical Oncology, Jefferson Medical College, Thomas Jefferson University, Philadelphia, PA, USA.

Objectives: To examine the association between social capital and adherence to cancer screening exams.

Methods: Data from a population-based survey assessed perceived neighborhood social capital as well as cancer screening behavior. We analyzed the influence of social capital on adherence to screening guidelines for cervical, breast, and colorectal cancer.

Results: Data from 2668 adults documented that those with greater perceived neighborhood social capital were more likely to be screened for cancer. The effect was strongest for colorectal cancer and weakest for cervical cancer.

Conclusions: Research on understanding the effect of the neighborhood social environment on efforts related to cancer screening behavior may be helpful for increasing cancer screening rates.
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http://dx.doi.org/10.5993/AJHB.37.5.12DOI Listing
September 2013

Acceptability of the human papillomavirus vaccine among urban adolescent males.

Am J Mens Health 2013 Jan 14;7(1):27-36. Epub 2012 Aug 14.

Drexel University, Philadephia, PA 19107, USA.

The human papillomavirus (HPV) vaccine was recently approved for use in males. Certain groups, such as men who have sex with men (MSM), are at increased risk of HPV infection. The purpose of the study was to understand perceptions of HPV and the vaccine among adolescent and young adult males, both heterosexual and MSM. Seventy-six males (45 heterosexual, 31 MSM) completed a questionnaire and participated in a focus group. Overall, 42% had heard of HPV and 39% had heard of the HPV vaccine. Males had moderate to favorable attitudes toward vaccination, although intentions to vaccinate were more neutral. MSM were more knowledgeable, aware, and in control of the decision to vaccinate than heterosexual males. Increasing awareness and knowledge about HPV and the vaccine may be necessary to encourage vaccination; certain subgroups of males may be more receptive to HPV vaccination than others.
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http://dx.doi.org/10.1177/1557988312456697DOI Listing
January 2013

Narrative Health Communication and Behavior Change: The Influence of Exemplars in the News on Intention to Quit Smoking.

J Commun 2012 Jun 25;62(3):473-492. Epub 2012 Apr 25.

Annenberg School for Communication, University of Pennsylvania, Philadelphia, PA 19104, USA.

This study investigated psychological mechanisms underlying the effect of narrative health communication on behavioral intention. Specifically, the study examined how exemplification in news about successful smoking cessation affects recipients' narrative engagement, thereby changing their intention to quit smoking. Nationally representative samples of U.S. adult smokers participated in 2 experiments. The results from the 2 experiments consistently showed that smokers reading a news article with an exemplar experienced greater narrative engagement compared to those reading an article without an exemplar. Those who reported more engagement were in turn more likely to report greater smoking cessation intentions.
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http://dx.doi.org/10.1111/j.1460-2466.2012.01644.xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3377164PMC
June 2012

An exploratory study of adolescent female reactions to direct-to-consumer advertising: the case of the Human Papillomavirus (HPV) Vaccine.

Health Mark Q 2011 Oct;28(4):372-85

a Division of Population Science, Department of Medical Oncology , Thomas Jefferson University , Philadelphia , Pennsylvania.

When the human papillomavirus (HPV) vaccine was approved in 2006, an extensive direct-to-consumer (DTC) advertising campaign raised awareness and promoted vaccination. This study explores adolescents' exposure to and understanding of the messages in these advertisements. Sixty-seven African American females participated in a focus group about DTC advertising for the HPV vaccine. Virtually all adolescents had seen an HPV vaccine DTC advertisement, but most did not understand the health information contained in it. If DTC advertising is to be an effective source of health information for adolescents in the future, it must take into account the unique features of an adolescent audience.
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http://dx.doi.org/10.1080/07359683.2011.630289DOI Listing
October 2011

Nicotine vaccines: will smokers take a shot at quitting?

Nicotine Tob Res 2010 Apr 25;12(4):390-7. Epub 2010 Feb 25.

Center of Excellence in Cancer Communication Research, Annenberg School for Communication, University of Pennsylvania, 3620 Walnut Street, 410, Philadelphia, PA 19104, USA.

Introduction: A vaccine against nicotine may soon be available to smokers who want to quit. The vaccine stimulates the production of antibodies that bind to nicotine, thereby impeding nicotine from crossing the blood-brain barrier and exerting psychoactive effects. The primary purpose of this study was to evaluate intentions to try a nicotine vaccine if one were to become available among a nationally representative sample of smokers. The secondary purpose was to assess whether information about genetic susceptibility to nicotine addiction had an effect on smokers' interest in receiving the vaccine.

Methods: Four hundred and twenty-seven adults were randomized to read one of two versions of a short description about the vaccine. One version framed addiction as genetically influenced, while the other framed it as environmentally influenced. Smokers were then asked about their intentions to use a nicotine vaccine if one were to become available in the future.

Results: Across both groups, 53% indicated that they would be likely or very likely to try the vaccine. Using multivariate linear regression, the strongest predictors of vaccination intention were having a favorable attitude toward a nicotine vaccine (beta = .41) and having a favorable attitude toward vaccination in general (beta = .22). There were no significant effects of the framing conditions on intention to receive the vaccine.

Discussion: Intentions to try a nicotine vaccine as a cessation method are relatively high among smokers. If the vaccine becomes available, specific groups of smokers may be more interested than others; education and recruitment efforts could be targeted appropriately.
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http://dx.doi.org/10.1093/ntr/ntq015DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847077PMC
April 2010

Awareness of anticancer vaccines among Asian American women with limited english proficiency: an opportunity for improved public health communication.

J Cancer Educ 2009 ;24(4):280-3

Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, PA 19104, USA.

Background: Asian Americans suffer from liver and cervical cancers, both vaccine preventable, yet vaccine awareness has not been described.

Methods: Cross-sectional survey (6 languages, 380 adult women).

Results: Those with limited English proficiency (LEP) were less likely to have accurate knowledge of cervical cancer vaccine (44% vs. 76%, among the 34% aware of any cancer-preventive vaccines) and were more likely to believe vaccines existed for non-vaccine-preventable cancers. Awareness of anti-liver cancer vaccine was low for both LEP and non-LEP women.

Conclusion: There is a great need to educate Asian Americans about vaccine-preventable cancers, especially among LEP women.
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http://dx.doi.org/10.1080/08858190902973127DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769022PMC
January 2010

The HPV vaccine and the media: how has the topic been covered and what are the effects on knowledge about the virus and cervical cancer?

Patient Educ Couns 2009 Nov 22;77(2):308-13. Epub 2009 Apr 22.

RTI International, Inc., Washington, DC 20005, USA.

Objective: In June 2006, the first vaccine for HPV was approved by the FDA and media coverage about the topic increased significantly. This study sought to explore the nature of the coverage and whether knowledge about HPV was affected by it.

Methods: A content analysis, including 321 news stories from major newspapers, the AP wire and television news networks was conducted. A monthly RDD-recruited Internet survey with a national sample (n=3323) was used to assess changes in population knowledge.

Results: Twenty-three percent of stories did not mention the sexually transmitted nature of the disease and 80% left out information about the need for continued cervical cancer screening after vaccination. Exposure to health-related media content was significantly associated with knowledge about HPV, even controlling for baseline knowledge (OR=1.62, 95% CI=1.12-2.35).

Conclusions: Changes in the volume of coverage over time were associated with knowledge about HPV, but the content analysis reveals that many of the stories were missing important information.

Practice Implications: Clinicians must consider the potential media source patients are using for HPV-related information in order to correct inaccurate or incomplete information that could affect health behavior.
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http://dx.doi.org/10.1016/j.pec.2009.03.018DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4250971PMC
November 2009

Effects of information framing on human papillomavirus vaccination.

J Womens Health (Larchmt) 2009 Feb;18(2):225-33

Annenberg School for Communication, University of Pennsylvania, Philadelphia, PA 19104, USA.

Background: In June 2006, the first vaccine to prevent human papillomavirus (HPV) transmission was approved for use in females in the United States. Because the vaccine was approved for females as young as 9, its success depends on parents' and individuals' willingness to accept vaccination. Little is known about how attitudes toward this vaccine will be influenced by the way the vaccine is portrayed in the media or in public debate.

Methods: To assess the effects of information framing on intentions to vaccinate self or female children, if appropriate, 635 adults read one of three short descriptive paragraphs about the vaccine, each of which emphasized a different aspect of the vaccine. Participants were then asked about their intentions to vaccinate under cost or no-cost conditions.

Results: Women who read that the vaccine protects only against cervical cancer had significantly higher intentions to vaccinate themselves when the vaccine was available at little or no cost compared with women who read alternate versions of the descriptive paragraph, F(2,325) = 5.74, p = 0.004.

Conclusions: How the HPV vaccine is framed may affect vaccination intentions under certain conditions. Women may be more receptive to the vaccine if it is framed as a cervical cancer prevention tool rather than a sexually transmitted infection (STI) prevention tool.
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http://dx.doi.org/10.1089/jwh.2007.0711DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945723PMC
February 2009

Are patterns of health behavior associated with cancer screening?

Am J Health Promot 2009 Jan-Feb;23(3):168-75

Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD 20892-7331, USA.

Purpose: This study investigates the relationship between patterns of health behaviors and the use of cancer-screening tests while controlling for sociodemographic and health system factors.

Design: Cross-sectional analysis of the 2000 National Health Interview (NHIS).

Setting: Nationally representative sample.

Subjects: Adults 50 years and older.

Measures: Use of cancer-screening tests, health behaviors, sociodemographic factors, and health system factors from self-reported responses from the NHIS. Sixteen health behavior patterns were identified based on lifestyle recommendations for physical activity, tobacco use, alcohol consumption, and fruit and vegetable consumption.

Results: Health behavior patterns, age, educational attainment, usual source of care, and health insurance were significantly associated with the use of breast, cervical, and colorectal cancer screening (p < .05). Approximate R2 for the four models ranged from .067 for colorectal cancer screening in women to .122 for cervical cancer screening. Having a usual source of care was the strongest correlate of screening; the magnitude of associations for health behavior patterns and demographic variables and screening was similar and much smaller than those for usual source of care.

Conclusion: These findings demonstrate relationships between patterns of multiple health behaviors and use of recommended cancer-screening tests, even when accounting for factors known to influence test use. This suggests potential for addressing cancer screening in the context of multiple behavior change interventions once barriers to health care access are removed.
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http://dx.doi.org/10.4278/ajhp.07082085DOI Listing
March 2009
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