Publications by authors named "Catharine Wang"

43 Publications

Utility of a virtual counselor (VICKY) to collect family health histories among vulnerable patient populations: A randomized controlled trial.

Patient Educ Couns 2021 May 18;104(5):979-988. Epub 2021 Feb 18.

Khoury College of Computer Sciences, Northeastern University, Boston, MA, USA.

Objectives: This study is a randomized controlled trial comparing the efficacy of a virtual counselor (VICKY) to the My Family Health Portrait (MFHP) tool for collecting family health history (FHx).

Methods: A total of 279 participants were recruited from a large safety-net hospital and block randomized by health literacy to use one of the digital FHx tools, followed by a genetic counselor interview. A final sample of 273 participants were included for analyses of primary study aims pertaining to tool concordance, which assessed agreement between tool and genetic counselor.

Results: Tool completion differed significantly between tools (VICKY = 97%, MFHP = 51%; p < .0001). Concordance between tool and genetic counselor was significantly greater for participants randomized to VICKY compared to MFHP for ascertaining first- and second-degree relatives (ps<.0001), and most health conditions examined. There was significant interaction by health literacy, with greater differences in concordance observed between tools among those with limited literacy.

Conclusions: A virtual counselor overcomes many of the literacy-related barriers to using traditional digital tools and highlights an approach that may be important to consider when collecting health histories from vulnerable populations.

Practice Implications: The usability of digital health history tools will have important implications for the quality of the data collected and its downstream clinical utility.
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http://dx.doi.org/10.1016/j.pec.2021.02.034DOI Listing
May 2021

Design of a study to implement population-based risk assessment for hereditary cancer genetic testing in primary care.

Contemp Clin Trials 2021 Feb 26;101:106257. Epub 2020 Dec 26.

University of Washington, 1959 NE Pacific St, Box 357120, Seattle, WA 98195, USA. Electronic address:

Identifying patients with high genetic risk for cancer has important clinical ramifications, but hereditary cancer risk is often not identified because of testing barriers at both the provider and patient level. It is unknown how to best implement appropriate genetic testing and follow-up care into an operating primary care clinic. Implementation studies to date have been conducted in high resourced facilities under optimal conditions, often not at the clinic level. This study aims to compare and evaluate two population-wide engagement strategies for identifying members of a primary care clinic's population with a family or personal history of cancer and offering high-risk individuals genetic testing for cancer susceptibility mutations. The two engagement strategies are: 1) point of care screening (POC), conducted when a patient is scheduled for an appointment and 2) direct patient engagement (DPE), where outreach provides the patient an opportunity to complete screening online on their own time. The study will identify changes, problems, and inefficiencies in clinical flow during and after the implementation of risk assessment and genomic testing for cancer risk across primary care clinics. It will also evaluate the effects of the two engagement strategies on patient, provider, and clinic leader outcomes, including perceptions of benefits, harms, and satisfaction with the engagement strategy and process of cancer risk assessment and genetic testing, across gender, racial/ethnic, socioeconomic, and genetic literacy divides. Finally, the study will evaluate the cost-effectiveness and budget impact of each engagement strategy.
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http://dx.doi.org/10.1016/j.cct.2020.106257DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8075171PMC
February 2021

Breast cancer polygenic risk scores in the clinical cancer genetic counseling setting: Current practices and impact on patient management.

J Genet Couns 2021 Apr 30;30(2):588-597. Epub 2020 Oct 30.

Ambry Genetics, Aliso Viejo, CA, USA.

Multivariate risk models are commonly used in clinical practice to estimate a woman's lifetime risk for breast cancer and assist in implementation of appropriate screening and risk reduction strategies. More recently, breast cancer polygenic risk scores (PRS) have been derived and integrated into these models to further improve risk estimation. While breast cancer PRS have been offered by two clinical diagnostic laboratories since 2017, little is known about the extent to which genetic counselors are ordering breast cancer PRS or incorporating the results into patient management. This study surveyed U.S. cancer genetic counselors from October 2019 to January 2020 to identify and understand their current practices with breast cancer PRS, to determine the impact of breast cancer PRS on patient management, and to anticipate future genetic counselor practices with breast cancer PRS. Fewer than half of respondents (43%, 51/120) had ordered breast cancer PRS and approximately one-third (35%, 16/46) reported that the PRS had changed their medical management recommendations. The majority of cancer genetic counselors had not ordered PRS, most commonly due to (a) lack of clinical guidelines (90%, 60/67), (b) insufficient evidence of clinical utility (88%, 59/67), and (c) lack of availability for patients of non-European ancestry (70%, 47/67). Of genetic counselors who had not ordered breast cancer PRS, only 10% (7/68) did not believe they would order PRS in the future. This is the first study to characterize genetic counselors' experiences with breast cancer PRS. Results from this study indicate that although breast cancer PRS have been clinically available for patients for several years, most cancer genetic counselors are not yet convinced they are ready to be incorporated into patient care.
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http://dx.doi.org/10.1002/jgc4.1347DOI Listing
April 2021

Assessing and Addressing the Need for Cancer Patient Education in a Resource-Limited Setting in Haiti.

Oncologist 2020 12 8;25(12):1039-1046. Epub 2020 Jun 8.

Global Oncology, Brookline, Massachusetts, USA.

Purpose: Misinformation and lack of information about cancer and its treatment pose significant challenges to delivering cancer care in resource-limited settings and may undermine patient engagement in care. We aimed to investigate patients' knowledge and attitudes toward cancer and its treatment and to adapt, implement, and evaluate a low-literacy cancer patient education booklet at the Hôpital Universitaire de Mirebalais (HUM) in rural Haiti.

Materials And Methods: A low-literacy cancer patient education booklet was adapted into Haitian Creole in collaboration with clinicians at HUM. Patients were recruited for structured interviews (n = 20) and two focus groups (n = 13) designed to explore patients' attitudes toward cancer and its treatment and to assess whether the booklet increased patients' knowledge via an investigator-designed knowledge test.

Results: Participants reported a subjective lack of knowledge about cancer and its treatments and described views of cancer as deadly or incurable. Patients of varying education levels valued receiving written materials that set expectations about cancer treatment and expressed a desire to share the booklet with caregivers and others in their community. Participants across all levels of education significantly increased their performance on a knowledge test after counseling using the booklet (p < .001).

Conclusion: We found that an educational booklet about cancer developed in collaboration with local providers was well received by patients with variable literacy levels and improved their knowledge of cancer and its treatment in a resource-limited setting. Such educational materials have the potential to serve as tools to engage patients with cancer and their families in care.

Implications For Practice: Misinformation and lack of information pose significant challenges to delivering cancer care in resource-limited settings; however, there are often no culturally and literacy appropriate tools available to aid in patient education. This article shows that written educational materials are well received by patients of variable literacy levels and can be effective tools for increasing patients' knowledge of cancer and its treatment in a limited-resource setting. Furthermore, the authors have made their educational booklet, Cancer and You, freely available online and welcome the opportunity to connect with readers of The Oncologist interested in implementing this educational booklet in clinical care.
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http://dx.doi.org/10.1634/theoncologist.2019-0258DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7938404PMC
December 2020

Designing and Evaluating a Digital Family Health History Tool for Spanish Speakers.

Int J Environ Res Public Health 2019 12 7;16(24). Epub 2019 Dec 7.

Department of Community Health Sciences, Boston University School of Public Health, Boston, MA 02118, USA.

Digital family health history tools have been developed but few have been tested with non-English speakers and evaluated for acceptability and usability. This study describes the cultural and linguistic adaptation and evaluation of a family health history tool (VICKY: VIrtual Counselor for Knowing Your Family History) for Spanish speakers. In-depth interviews were conducted with 56 Spanish-speaking participants; a subset of 30 also participated in a qualitative component to evaluate the acceptability and usability of Spanish VICKY. Overall, agreement in family history assessment was moderate between VICKY and a genetic counselor (weighted kappa range: 0.4695 for stroke-0.6615 for heart disease), although this varied across disease subtypes. Participants felt comfortable using VICKY and noted that VICKY was very likeable and possessed human-like characteristics. They reported that VICKY was very easy to navigate, felt that the instructions were very clear, and thought that the time it took to use the tool was just right. Spanish VICKY may be useful as a tool to collect family health history and was viewed as acceptable and usable. The study results shed light on some cultural differences that may influence interactions with family history tools and inform future research aimed at designing and testing culturally and linguistically diverse digital systems.
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http://dx.doi.org/10.3390/ijerph16244979DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950582PMC
December 2019

Correction: The Search for Consumers of Web-Based Raw DNA Interpretation Services: Using Social Media to Target Hard-to-Reach Populations.

J Med Internet Res 2019 Aug 13;21(8):e15735. Epub 2019 Aug 13.

Department of Community Health Sciences, Boston University School of Public Health, Boston, MA, United States.

[This corrects the article DOI: 10.2196/12980.].
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http://dx.doi.org/10.2196/15735DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6711039PMC
August 2019

The Search for Consumers of Web-Based Raw DNA Interpretation Services: Using Social Media to Target Hard-to-Reach Populations.

J Med Internet Res 2019 07 30;21(7):e12980. Epub 2019 Jul 30.

Department of Community Health Sciences, Boston University School of Public Health, Boston, MA, United States.

Background: In recent years, there has been a proliferation of third-party Web-based services available to consumers to interpret raw DNA from direct-to-consumer genetic testing companies. Little is known about who uses these services and the downstream health implications. Identifying this hard-to-reach population of consumers for research raised questions about the most effective recruitment methods to undertake. Past studies have found that Web-based social media survey distribution can be cost-effective for targeting hard-to-reach populations, yet comparative efficacy information across platforms is limited.

Objective: The aim of this study was to identify the most effective Web-based strategies to identify and recruit the target population of direct-to-consumer genetic testing users who also made use of third-party interpretation services to analyze their raw genetic data. Web-based survey recruitment methods varying by social media platform and advertising method were compared in terms of cost-effectiveness and demographics of survey respondents.

Methods: A total of 5 Web-based survey distribution conditions were examined: 4 paid advertising services and 1 unpaid service. For the paid services, a 2x2 quasi-experimental design compared social media platforms (Facebook vs Twitter) and advertising tracking metrics (by click vs by conversion). The fifth unpaid comparison method consisted of study postings on the social media platform, Reddit, without any paid advertising. Links to identical Web-based versions of the study questionnaire were posted for 10 to 14 days for each of the distribution conditions, which allowed tracking the number of respondents that entered and completed the questionnaire by distribution condition.

Results: In total, 438 individuals were recruited to the study through all conditions. A nearly equivalent number of participants were recruited from paid campaigns on Facebook (n=159) and Twitter (n=167), with a smaller sample recruited on Reddit (n=112). Significantly more participants were recruited through conversion-tracking (n=222) than through click-tracking campaigns (n=104; Z=6.5, P<.001). Response rates were found to be partially driven by organic sharing of recruitment materials among social media users. Conversion tracking was more cost-effective than click tracking across paid social media platforms. Significant differences in terms of gender and age distributions were noted between the platforms and between the tracking metrics.

Conclusions: Web-based recruitment methods were effective at recruiting participants from a hard-to-reach population in a short time frame. There were significant differences in the effectiveness of various paid advertising techniques. Recruitment through Web-based communities also appeared to perform adequately, yet it may be limited by the number of users accessible in open community groups. Future research should evaluate the impact of organic sharing of recruitment materials because this appeared to play a substantial role in the observed effectiveness of different methods.
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http://dx.doi.org/10.2196/12980DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6691676PMC
July 2019

Recontact practices of cancer genetic counselors and an exploration of professional, legal, and ethical duty.

J Genet Couns 2019 08 6;28(4):836-846. Epub 2019 May 6.

MGH Institute of Health Professions, Boston, Massachusetts.

The duty to recontact continues to be revisited in the field of clinical genetics and is currently relevant for cancer genetic counseling given the transition from single-gene to multi-gene panel testing. We recruited cancer genetic counselors through the National Society of Genetic Counselors list-serv to complete an online survey assessing current practices and perspectives regarding recontacting patients about diagnostic genetic tests. Forty-one percent of respondents reported that they have recontacted patients to offer updated (new) diagnostic genetic testing (40/97). A majority (61%, 17/28), of genetic counselors who reported recontact specifically for panel testing indicated that the availability of management recommendations for genes not previously tested routinely was an important factor in the decision to recontact. All respondents who recontacted patients reported "improved patient care" as a perceived benefit. Respondents indicated that recontact is mostly a patient responsibility (49%), followed by a shared responsibility between the provider and patient (43%). Few respondents (2%) reported a uniform ethical duty to recontact patients regarding new and updated testing, while the majority (89%) felt that there was some degree of ethical duty. A greater percentage of those who reported past recontact practices reported intention to recontact in the future (p = 0.001). There is little consensus among the genetic counselor respondents about how to approach the recontacting of patients to offer updated genetic testing.
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http://dx.doi.org/10.1002/jgc4.1126DOI Listing
August 2019

Behavioral and social scientists' reflections on genomics: a systematic evaluation within the Society of Behavioral Medicine.

Transl Behav Med 2019 11;9(6):1012-1019

Division of Cancer Control and Population Science, National Cancer Institute, Bethesda, MD, USA.

Clinical and public health translation of genomics could be facilitated by expertise from behavioral medicine, yet genomics has not been a significant focus of the Society of Behavioral Medicine (SBM). SBM convened a working group (WG) to lead a systematic exploration of members' views on: (a) whether SBM should give a higher priority to genomic translation and (b) what efforts, if any, should be made to support this increased engagement. The WG used a stepped process over 2 years that began by gaining input from SBM leadership regarding key issues and suggestions for approach, engaging a cross section of membership to expand and record these discussions, followed by systematic qualitative analyses to inform priority action steps. Discussions with SBM leaders and members suggested that genomics was relevant to SBM, particularly for junior members. SBM members' expertise in social and behavioral theory, and implementation study designs, were viewed as highly relevant to genomic translation. Participants expressed that behavioral and social scientists should be engaged in translational genomics work, giving special attention to health disparities. Proposed action steps are aligned with a "push-pull" framework of innovation dissemination. "Push" strategies aim to reach potential adopters and included linking members with genomics expertise to those wanting to become involved and raising awareness of evidence-based genomic applications ready for implementation. "Pull" strategies aim to expand demand and included developing partnerships with genomics societies and advocating for funding, study section modifications, and training programs.
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http://dx.doi.org/10.1093/tbm/ibz044DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7184899PMC
November 2019

Optimal Integration of Behavioral Medicine into Clinical Genetics and Genomics.

Am J Hum Genet 2019 02;104(2):193-196

Department of Community Sciences, Boston University School of Public Health, Boston, MA 02118, USA.

Clinical genetics and genomics will exert their greatest population impact by leveraging the rich knowledge of human behavior that is central to the discipline of behavioral medicine. We contend that more concerted efforts are needed to integrate these fields synergistically, and accordingly, we consider barriers and potential actions to hasten such integration.
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http://dx.doi.org/10.1016/j.ajhg.2019.01.011DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6369539PMC
February 2019

Consumer use and response to online third-party raw DNA interpretation services.

Mol Genet Genomic Med 2018 01 2;6(1):35-43. Epub 2017 Nov 2.

Division of Emerging Media Studies, College of Communication, Boston University, Boston, MA, USA.

Background: With the availability of raw DNA generated from direct-to-consumer (DTC) testing companies, there has been a proliferation of third-party online services that are available to interpret the raw data for both genealogy and/or health purposes. This study examines the current landscape and downstream clinical implications of consumer use of third-party services.

Methods: Study participants were recruited online from social media platforms. A total of 321 survey respondents reported using third-party services for raw DNA interpretation.

Results: Participants were highly motivated to explore raw DNA for ancestral information (67%), individual health implications (62%), or both (40%). Participants primarily used one of seven companies to interpret raw DNA; 73% used more than one. Company choice was driven by the type of results offered (51%), price (45%), and online reviews (31%). Approximately 30% of participants shared results with a medical provider and 21% shared with more than one. Outcomes of sharing ranged from disinterest/discounting of the information to diagnosis of genetic conditions. Participants were highly satisfied with their decision to analyze raw DNA (M = 4.54/5), yet challenges in understanding interpretation results were reported irrespective of satisfaction ratings.

Conclusion: Consumers face challenges in understanding the results and may seek out clinical assistance in interpreting their raw DNA results.
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http://dx.doi.org/10.1002/mgg3.340DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5823680PMC
January 2018

The impact of raw DNA availability and corresponding online interpretation services: A mixed-methods study.

Transl Behav Med 2018 01;8(1):105-112

Department of Community Health Sciences, Boston University School of Public Health, Boston, MA, USA.

Consumer access to third-party services to interpret raw DNA has raised concerns about downstream healthcare implications. This mixed-methods study set out to examine the extent to which genetic counselors have been contacted by consumers of third-party services and describe counselors' experiences with these "consumer" patients. Counselor views on the quality of information provided to consumers were also examined. Eighty-five genetic counselors completed an online survey, of which 22 completed in-depth telephone interviews. Survey and interview data were analyzed and combined using triangulation techniques. Over half (53%) of the survey respondents indicated they had been contacted by a patient following the use of a third-party raw DNA interpretation service. Among counselors contacted, 72% saw at least one patient. Counselors reported challenges unique to this patient population including overemphasis by patients on the validity of the data and patient resistance to information provided by the counselor. Preparation time burden and counselor inexperience and discomfort counseling these patients were additional challenges. Counselors expressed concern about the quality of the raw data and the clarity and usefulness of interpretation reports. Genetic counselors' experiences with consumer's use of third-party DNA interpretation services provide insight on the opportunities and challenges with the availability of raw DNA directly to consumers. Efforts to better support both consumers and genetic service providers are needed to maximize the effective translation of genome-based knowledge for population health.
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http://dx.doi.org/10.1093/tbm/ibx009DOI Listing
January 2018

Diet and exercise changes following direct-to-consumer personal genomic testing.

BMC Med Genomics 2017 05 2;10(1):24. Epub 2017 May 2.

Division of Genetics, Department of Medicine, Brigham and Women's Hospital, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA, 02115, USA.

Background: The impacts of direct-to-consumer personal genomic testing (PGT) on health behaviors such as diet and exercise are poorly understood. Our investigation aimed to evaluate diet and exercise changes following PGT and to determine if changes were associated with genetic test results obtained from PGT.

Methods: Customers of 23andMe and Pathway Genomics completed a web-based survey prior to receiving PGT results (baseline) and 6 months post-results. Fruit and vegetable intake (servings/day), and light, vigorous and strength exercise frequency (days/week) were assessed. Changes in diet and exercise were examined using paired t-tests and linear regressions. Additional analyses examined whether outcomes differed by baseline self-reported health (SRH) or content of PGT results.

Results: Longitudinal data were available for 1,002 participants. Significant increases were observed for vegetable intake (mean Δ = 0.11 (95% CI = 0.05, 0.17), p = 0.0003) and strength exercise (Δ = 0.14 (0.03, 0.25), p = 0.0153). When stratified by SRH, significant increases were observed for all outcomes among lower SRH participants: fruit intake, Δ = 0.11 (0.02, 0.21), p = 0.0148; vegetable intake, Δ = 0.16 (0.07, 0.25), p = 0.0005; light exercise, Δ = 0.25 (0.03, 0.47), p = 0.0263; vigorous exercise, Δ = 0.23 (0.06, 0.41), p = 0.0097; strength exercise, Δ = 0.19 (0.01, 0.37), p = 0.0369. A significant change among higher SRH participants was only observed for light exercise, and in the opposite direction: Δ = -0.2468 (-0.06, -0.44), p = 0.0111. Genetic results were not consistently associated with any diet or exercise changes.

Conclusions: The experience of PGT was associated with modest, mostly positive changes in diet and exercise. Associations were independent of genetic results from PGT.
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http://dx.doi.org/10.1186/s12920-017-0258-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5412058PMC
May 2017

Personal Genomic Testing for Cancer Risk: Results From the Impact of Personal Genomics Study.

J Clin Oncol 2017 Feb 12;35(6):636-644. Epub 2016 Dec 12.

Stacy W. Gray, City of Hope National Medical Center, Duarte, CA; Sarah E. Gollust, University of Minnesota School of Public Health, Minneapolis, MN; Deanna Alexis Carere, McMaster University and Population Health Research Institute, Hamilton Health Sciences, Hamilton, Ontario, Canada; Clara A. Chen and Catharine Wang, Boston University School of Public Health; Angel Cronin and Huma Q. Rana, Dana-Farber Cancer Institute; Sarah S. Kalia and Robert C. Green, Brigham and Women's Hospital; Huma Q. Rana and Robert C. Green, Harvard Medical School; Robert C. Green, Partners Healthcare Personalized Medicine, Boston, MA; Mack T. Ruffin IV, University of Michigan School of Medicine; and J. Scott Roberts, University of Michigan School of Public Health, Ann Arbor, MI.

Purpose Significant concerns exist regarding the potential for unwarranted behavior changes and the overuse of health care resources in response to direct-to-consumer personal genomic testing (PGT). However, little is known about customers' behaviors after PGT. Methods Longitudinal surveys were given to new customers of 23andMe (Mountain View, CA) and Pathway Genomics (San Diego, CA). Survey data were linked to individual-level PGT results through a secure data transfer process. Results Of the 1,042 customers who completed baseline and 6-month surveys (response rate, 71.2%), 762 had complete cancer-related data and were analyzed. Most customers reported that learning about their genetic risk of cancers was a motivation for testing (colorectal, 88%; prostate, 95%; breast, 94%). No customers tested positive for pathogenic mutations in highly penetrant cancer susceptibility genes. A minority of individuals received elevated single nucleotide polymorphism-based PGT cancer risk estimates (colorectal, 24%; prostate, 24%; breast, 12%). At 6 months, customers who received elevated PGT cancer risk estimates were not significantly more likely to change their diet, exercise, or advanced planning behaviors or engage in cancer screening, compared with individuals at average or reduced risk. Men who received elevated PGT prostate cancer risk estimates changed their vitamin and supplement use more than those at average or reduced risk (22% v 7.6%, respectively; adjusted odds ratio, 3.41; 95% CI, 1.44 to 8.18). Predictors of 6-month behavior include baseline behavior (exercise, vitamin or supplement use, and screening), worse health status (diet and vitamin or supplement use), and older age (advanced planning, screening). Conclusion Most adults receiving elevated direct-to-consumer PGT single nucleotide polymorphism-based cancer risk estimates did not significantly change their diet, exercise, advanced care planning, or cancer screening behaviors.
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http://dx.doi.org/10.1200/JCO.2016.67.1503DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5455805PMC
February 2017

A randomized trial Examining The Impact Of Communicating Genetic And Lifestyle Risks For Obesity.

Obesity (Silver Spring) 2016 Dec;24(12):2481-2490

Department of Bioethics and Humanities, University of Washington School of Medicine, Seattle, Washington, USA.

Objective: Genetic testing for obesity is available directly to consumers, yet little is understood about its behavioral impact and its added value to nongenetic risk communication efforts based on lifestyle factors.

Methods: A randomized trial examined the short-term impact of providing personalized obesity risk information, using a 2 × 2 factorial design. Participants were recruited from the Coriell Personalized Medicine Collaborative (CPMC) and randomized to receive (1) no risk information (control), (2) genetic risk, (3) lifestyle risk, or (4) combined genetic/lifestyle risks. Baseline and 3-month follow-up survey data were collected. Analyses examined the impact of risk feedback on intentions to lose weight and self-reported weight.

Results: A total of 696 participants completed the study. A significant interaction effect was observed for genetic and lifestyle information on intent to lose weight (P = 0.0150). Those who received genetic risk alone had greater intentions at follow-up, compared with controls (P = 0.0034). The impact of receiving elevated risk information on intentions varied by source and combination of risks presented. Non-elevated genetic risk did not lower intentions. No group differences were observed for self-reported weight.

Conclusions: Genetic risk information for obesity may add value to lifestyle risk information depending on the context in which it is presented.
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http://dx.doi.org/10.1002/oby.21661DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5127396PMC
December 2016

Awareness, Interest, and Preferences of Primary Care Providers in Using Point-of-Care Cancer Screening Technology.

PLoS One 2016 15;11(1):e0145215. Epub 2016 Jan 15.

Harvard Medical School, Boston, Massachusetts, United States of America.

Well-developed point-of-care (POC) cancer screening tools have the potential to provide better cancer care to patients in both developed and developing countries. However, new medical technology will not be adopted by medical providers unless it addresses a population's existing needs and end-users' preferences. The goals of our study were to assess primary care providers' level of awareness, interest, and preferences in using POC cancer screening technology in their practice and to provide guidelines to biomedical engineers for future POC technology development. A total of 350 primary care providers completed a one-time self-administered online survey, which took approximately 10 minutes to complete. A $50 Amazon gift card was given as an honorarium for the first 100 respondents to encourage participation. The description of POC cancer screening technology was provided in the beginning of the survey to ensure all participants had a basic understanding of what constitutes POC technology. More than half of the participants (57%) stated that they heard of the term "POC technology" for the first time when they took the survey. However, almost all of the participants (97%) stated they were either "very interested" (68%) or "somewhat interested" (29%) in using POC cancer screening technology in their practice. Demographic characteristics such as the length of being in the practice of medicine, the percentage of patients on Medicaid, and the average number of patients per day were not shown to be associated with the level of interest in using POC. These data show that there is a great interest in POC cancer screening technology utilization among this population of primary care providers and vast room for future investigations to further understand the interest and preferences in using POC cancer technology in practice. Ensuring that the benefits of new technology outweigh the costs will maximize the likelihood it will be used by medical providers and patients.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145215PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4714834PMC
July 2016

Genetic causal beliefs about obesity, self-efficacy for weight control, and obesity-related behaviours in a middle-aged female cohort.

Psychol Health 2016 2;31(4):420-35. Epub 2016 Jan 2.

f Department of Community Health Sciences , Boston University , Boston , MA , USA.

Objective: Obesity is a heritable condition with well-established risk-reducing behaviours. Studies have shown that beliefs about the causes of obesity are associated with diet and exercise behaviour. Identifying mechanisms linking causal beliefs and behaviours is important for obesity prevention and control.

Design: Cross-sectional multi-level regression analyses of self-efficacy for weight control as a possible mediator of obesity attributions (diet, physical activity, genetic) and preventive behaviours in 487 non-Hispanic White women from South King County, Washington.

Main Outcome Measures: Self-reported daily fruit and vegetable intake and weekly leisure-time physical activity.

Results: Diet causal beliefs were positively associated with fruit and vegetable intake, with self-efficacy for weight control partially accounting for this association. Self-efficacy for weight control also indirectly linked physical activity attributions and physical activity behaviour. Relationships between genetic causal beliefs, self-efficacy for weight control, and obesity-related behaviours differed by obesity status. Self-efficacy for weight control contributed to negative associations between genetic causal attributions and obesity-related behaviours in non-obese, but not obese, women.

Conclusion: Self-efficacy is an important construct to include in studies of genetic causal beliefs and behavioural self-regulation. Theoretical and longitudinal work is needed to clarify the causal nature of these relationships and other mediating and moderating factors.
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http://dx.doi.org/10.1080/08870446.2015.1115503DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4769980PMC
July 2016

Impact of family history assessment on communication with family members and health care providers: A report from the Family Healthware™ Impact Trial (FHITr).

Prev Med 2015 Aug 19;77:28-34. Epub 2015 Apr 19.

Departments of Family Medicine & Community Health and Reproductive Biology, Case Western Reserve University and Case Comprehensive Cancer Center, University Hospitals Case Medical Center, Cleveland, USA.

Objective: This study examines the impact of Family Healthware™ on communication behaviors; specifically, communication with family members and health care providers about family health history.

Methods: A total of 3786 participants were enrolled in the Family Healthware™ Impact Trial (FHITr) in the United States from 2005-7. The trial employed a two-arm cluster-randomized design, with primary care practices serving as the unit of randomization. Using generalized estimating equations (GEE), analyses focused on communication behaviors at 6month follow-up, adjusting for age, site and practice clustering.

Results: A significant interaction was observed between study arm and baseline communication status for the family communication outcomes (p's<.01), indicating that intervention had effects of different magnitude between those already communicating at baseline and those who were not. Among participants who were not communicating at baseline, intervention participants had higher odds of communicating with family members about family history risk (OR=1.24, p=0.042) and actively collecting family history information at follow-up (OR=2.67, p=0.026). Family Healthware™ did not have a significant effect on family communication among those already communicating at baseline, or on provider communication, regardless of baseline communication status. Greater communication was observed among those at increased familial risk for a greater number of diseases.

Conclusion: Family Healthware™ prompted more communication about family history with family members, among those who were not previously communicating. Efforts are needed to identify approaches to encourage greater sharing of family history information, particularly with health care providers.
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http://dx.doi.org/10.1016/j.ypmed.2015.04.007DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4508012PMC
August 2015

Acceptability and feasibility of a virtual counselor (VICKY) to collect family health histories.

Genet Med 2015 Oct 15;17(10):822-30. Epub 2015 Jan 15.

General Internal Medicine, Boston University School of Medicine, Boston, Massachusetts, USA.

Purpose: To overcome literacy-related barriers in the collection of electronic family health histories, we developed an animated Virtual Counselor for Knowing your Family History, or VICKY. This study examined the acceptability and accuracy of using VICKY to collect family histories from underserved patients as compared with My Family Health Portrait (MFHP).

Methods: Participants were recruited from a patient registry at a safety net hospital and randomized to use either VICKY or MFHP. Accuracy was determined by comparing tool-collected histories with those obtained by a genetic counselor.

Results: A total of 70 participants completed this study. Participants rated VICKY as easy to use (91%) and easy to follow (92%), would recommend VICKY to others (83%), and were highly satisfied (77%). VICKY identified 86% of first-degree relatives and 42% of second-degree relatives; combined accuracy was 55%. As compared with MFHP, VICKY identified a greater number of health conditions overall (49% with VICKY vs. 31% with MFHP; incidence rate ratio (IRR): 1.59; 95% confidence interval (95% CI): 1.13-2.25; P = 0.008), in particular, hypertension (47 vs. 15%; IRR: 3.18; 95% CI: 1.66-6.10; P = 0.001) and type 2 diabetes (54 vs. 22%; IRR: 2.47; 95% CI: 1.33-4.60; P = 0.004).

Conclusion: These results demonstrate that technological support for documenting family history risks can be highly accepted, feasible, and effective.
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http://dx.doi.org/10.1038/gim.2014.198DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4503525PMC
October 2015

Celebrity disclosures and information seeking: the case of Angelina Jolie.

Genet Med 2015 Jul 23;17(7):545-53. Epub 2014 Oct 23.

Department of Community Health Sciences, Boston University School of Public Health, Boston, Massachusetts, USA.

Purpose: On 14 May 2013, actress Angelina Jolie disclosed that she had a BRCA1 mutation and underwent a prophylactic bilateral mastectomy. This study documents the impact of her disclosure on information-seeking behavior, specifically that regarding online genetics and risk reduction resources available from the National Cancer Institute.

Methods: Using Adobe Analytics, daily page views for 11 resources were tracked from 23 April 2013 through 25 June 2013. Usage data were also obtained for four resources over a 2-year period (2012-2013). Source of referral that viewers used to locate a specific resource was also examined.

Results: There was a dramatic and immediate increase in traffic to the National Cancer Institute's online resources. The Preventive Mastectomy fact sheet received 69,225 page views on May 14, representing a 795-fold increase as compared with the previous Tuesday. A fivefold increase in page views was observed for the PDQ Genetics of Breast and Ovarian Cancer summary in the same time frame. A substantial increase, from 0 to 49%, was seen in referrals from news outlets to four resources from 7 May to 14 May.

Conclusion: Celebrity disclosures can dramatically influence online information-seeking behaviors. Efforts to capitalize on these disclosures to ensure easy access to accurate information are warranted.
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http://dx.doi.org/10.1038/gim.2014.141DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4408206PMC
July 2015

A randomized trial of the clinical utility of genetic testing for obesity: design and implementation considerations.

Clin Trials 2014 Feb 11;11(1):102-13. Epub 2013 Nov 11.

aDepartment of Community Health Sciences, Boston University School of Public Health, Boston, MA, USA.

Background: Obesity rates in the United States have escalated in recent decades and present a major challenge in public health prevention efforts. Currently, testing to identify genetic risk for obesity is readily available through several direct-to-consumer companies. Despite the availability of this type of testing, there is a paucity of evidence as to whether providing people with personal genetic information on obesity risk will facilitate or impede desired behavioral responses.

Purpose: We describe the key issues in the design and implementation of a randomized controlled trial examining the clinical utility of providing genetic risk information for obesity.

Methods: Participants are being recruited from the Coriell Personalized Medicine Collaborative, an ongoing, longitudinal research cohort study designed to determine the utility of personal genome information in health management and clinical decision making. The primary focus of the ancillary Obesity Risk Communication Study is to determine whether genetic risk information added value to traditional communication efforts for obesity, which are based on lifestyle risk factors. The trial employs a 2 × 2 factorial design in order to examine the effects of providing genetic risk information for obesity, alone or in combination with lifestyle risk information, on participants' psychological responses, behavioral intentions, health behaviors, and weight.

Results: The factorial design generated four experimental arms based on communication of estimated risk to participants: (1) no risk feedback (control), (2) genetic risk only, (3) lifestyle risk only, and (4) both genetic and lifestyle risk (combined). Key issues in study design pertained to the selection of algorithms to estimate lifestyle risk and determination of information to be provided to participants assigned to each experimental arm to achieve a balance between clinical standards and methodological rigor. Following the launch of the trial in September 2011, implementation challenges pertaining to low enrollment and differential attrition became apparent and required immediate attention and modifications to the study protocol. Although monitoring of these efforts is ongoing, initial observations show a doubling of enrollment and reduced attrition.

Limitations: The trial is evaluating the short-term impact of providing obesity risk information as participants are followed for only 3 months. This study is built upon the structure of an existing personalized medicine study wherein participants have been provided with genetic information for other diseases. This nesting in a larger study may attenuate the effects of obesity risk information and has implications for the generalizability of study findings.

Conclusions: This randomized trial examines value of obesity genetic information, both when provided independently and when combined with lifestyle risk assessment, to motivate individuals to engage in healthy lifestyle behaviors. Study findings will guide future intervention efforts to effectively communicate genetic risk information.
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http://dx.doi.org/10.1177/1740774513508029DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3946398PMC
February 2014

Family history assessment: impact on disease risk perceptions.

Am J Prev Med 2012 Oct;43(4):392-8

Department of Community Health Sciences, Boston University School of Public Health, Boston, MA 02118, USA.

Background: Family Healthware™, a tool developed by the CDC, is a self-administered web-based family history tool that assesses familial risk for six diseases (coronary heart disease; stroke; diabetes; and colon, breast, and ovarian cancers) and provides personalized prevention messages based on risk. The Family Healthware Impact Trial (FHITr) set out to examine the clinical utility of presenting personalized preventive messages tailored to family history risk for improving health behaviors.

Purpose: The purpose of this study was to examine the impact of Family Healthware on modifying disease risk perceptions, particularly among those who initially underestimated their risk for certain diseases.

Design: A total of 3786 patients were enrolled in a cluster-randomized trial to evaluate the clinical utility of Family Healthware.

Setting/participants: Participants were recruited from 41 primary care practices among 13 states between 2005 and 2007.

Main Outcome Measures: Perceived risk for each disease was assessed at baseline and 6-month follow-up using a single-item comparative risk question. Analyses were completed in March 2012.

Results: Compared to controls, Family Healthware increased risk perceptions among those who underestimated their risk for heart disease (15% vs 9%, p<0.005); stroke (11% vs 8%, p<0.05); diabetes (18% vs 11%, p<0.05); and colon cancer (17% vs 10%, p=0.05) but not breast or ovarian cancers. The majority of underestimators did not shift in their disease risk perceptions.

Conclusions: Family Healthware was effective at increasing disease risk perceptions, particularly for metabolic conditions, among those who underestimated their risk. Results from this study also demonstrate the relatively resistant nature of risk perceptions.

Trial Registration: This study is registered at clinicaltrials.govNCT00164658.
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http://dx.doi.org/10.1016/j.amepre.2012.06.013DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3448124PMC
October 2012

The evolution of personalized cancer genetic counseling in the era of personalized medicine.

Fam Cancer 2012 Sep;11(3):539-44

Practice changes in cancer genetic counseling have occurred to meet the demand for cancer genetic services. As cancer genetics continues to impact not only prevention strategies but also treatment decisions, current cancer genetic counseling models will need to be tailored to accommodate emerging clinical indications. These clinical indications include: surgical prophylactic bilateral mastectomy candidates, PARP-inhibitor candidates, patients with abnormal tumor screening results for Lynch syndrome, and post-test counseling patients (after genetic testing is ordered by another healthcare provider). A more personalized, multidisciplinary approach to selecting the best framework, for a given clinical indication, may become increasingly necessary in this era of personalized medicine.
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http://dx.doi.org/10.1007/s10689-012-9524-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3905734PMC
September 2012

Health beliefs among individuals at increased familial risk for type 2 diabetes: implications for prevention.

Diabetes Res Clin Pract 2012 May 17;96(2):156-62. Epub 2012 Jan 17.

Department of Health, Promotion and Development, School of Nursing, University of Pittsburgh, Pittsburgh, PA, USA.

Aim: To evaluate perceived risk, control, worry, and severity about diabetes, coronary heart disease (CHD) and stroke among individuals at increased familial risk of diabetes.

Methods: Data analyses were based on the Family Healthware™ Impact Trial. Baseline health beliefs were compared across three groups: (1) no family history of diabetes, CHD or stroke (n=836), (2) family history of diabetes alone (n=267), and (3) family history of diabetes and CHD and/or stroke (n=978).

Results: After adjusting for age, gender, race, education and BMI, scores for perceived risk for diabetes (p<0.0001), CHD (p<0.0001) and stroke (p<0.0001) were lowest in Group 1 and highest in Group 3. Similar results were observed about worry for diabetes (p<0.0001), CHD (p<0.0001) and stroke (p<0.0001). Perceptions of control or severity for diabetes, CHD or stroke did not vary across the three groups.

Conclusions: Among individuals at increased familial risk for diabetes, having family members affected with CHD and/or stroke significantly influenced perceived risk and worry. Tailored lifestyle interventions for this group that assess health beliefs and emphasize approaches for preventing diabetes, as well as its vascular complications, may be an effective strategy for reducing the global burden of these serious but related chronic disorders.
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http://dx.doi.org/10.1016/j.diabres.2011.12.017DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3905745PMC
May 2012

Clinical utility of family history for cancer screening and referral in primary care: a report from the Family Healthware Impact Trial.

Genet Med 2011 Nov;13(11):956-65

Department of Medicine, Division of Genetics, NorthShore University HealthSystem, Evanston, Illinois 60201, USA.

Purpose: To assess the effectiveness of computerized familial risk assessment and tailored messages for identifying individuals for targeted cancer prevention strategies and motivating behavior change.

Methods: We conducted a randomized clinical trial in primary care patients aged 35-65 years using Family Healthware, a self-administered, internet-based tool that collects family history for six common diseases including breast cancer, colon cancer, and ovarian cancer, stratifies risk into three tiers, and provides tailored prevention messages. Cancer screening adherence and consultation were measured at baseline and 6-month follow-up.

Results: Of 3283 participants, 34% were at strong or moderate risk of at least one of the cancers. Family Healthware identified additional participants for whom earlier screening (colon cancer, 4.4%; breast cancer, women ages: 35-39 years, 9%) or genetic assessment (colon cancer, 2.5%; breast cancer, 10%; and ovarian cancer, 4%) may be indicated. Fewer than half were already adherent with risk-based screening. Screening adherence improved for all risk categories with no difference between intervention and control groups. Consultation with specialists did not differ between groups.

Conclusion: Family Healthware identified patients for intensified cancer prevention. Engagement of clinicians and patients, integration with clinical decision support, and inclusion of nonfamilial risk factors may be necessary to achieve the full potential of computerized risk assessment.
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http://dx.doi.org/10.1097/GIM.0b013e3182241d88DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3425444PMC
November 2011

Effect of preventive messages tailored to family history on health behaviors: the Family Healthware Impact Trial.

Ann Fam Med 2011 Jan-Feb;9(1):3-11

Department of Family Medicine, University of Michigan, Ann Arbor, MI, USA.

Purpose: We wanted to determine the impact of automated family history assessment and tailored messages for coronary heart disease, stroke, diabetes, colorectal, breast, and ovarian cancer on preventive behaviors compared with a standard preventive message.

Methods: The study was a cluster-randomized clinical trial that included 41 primary care practices, the majority in the Midwest, using Family Healthware, a self-administered, Web-based tool that assesses familial risk for the diseases and provides personalized risk-tailored messages. Patients in the control group received an age- and sex-specific health message related to lifestyle and screening. Smoking cessation, fruit and vegetable intake, physical activity, aspirin use, blood pressure, and cholesterol and blood glucose screening were assessed at baseline and 6 months after the intervention.

Results: Of 4,248 participants, 3,344 (78%) completed the study. Participants were white (91%), female (70%), and insured (97%), and had a mean age of 50.6 years (range 35-65 years). Intervention participants were more likely to increase daily fruit and vegetable consumption from 5 or fewer servings a day to 5 or more servings a day (OR = 1.29; 95% confidence interval [CI], 1.05-1.58) and to increase physical activity (OR = 1.47; 95% CI, 1.08-1.98) to 5 to 6 times a week for 30 minutes or more a week. The absolute differences in proportion were 3% and 4%, respectively. Intervention participants were less likely to move from not having cholesterol screening in the last 5 years to having their cholesterol measured within 5 years (OR = 0.34; 95% CI, 0.17-0.67), with an absolute difference of 15%.

Conclusions: Messages tailored to an individual's familial risk for 6 common diseases modestly increased self-reported physical activity and fruit and vegetable intake but reduced the likelihood of receiving cholesterol screening.
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http://dx.doi.org/10.1370/afm.1197DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022039PMC
April 2011

Components of family history associated with women's disease perceptions for cancer: a report from the Family Healthware™ Impact Trial.

Genet Med 2011 Jan;13(1):52-62

Center for Medical Genetics, NorthShore University HealthSystem, 1000 Central Street, Suite 620, Evanston, IL 60201, USA.

Purpose: To determine the specific components of family history and personal characteristics related to disease perceptions about breast, colon, and ovarian cancers.

Methods: Baseline, cross-sectional data on 2,505 healthy women aged 35-65 years enrolled from 41 primary care practices in the cluster-randomized Family Healthware™ Impact Trial, assessed for detailed family history and perceived risk, perceived severity, worry, and perceived control over getting six common diseases including breast, colon, and ovarian cancers.

Results: Participants provided family history information on 41,841 total relatives. We found evidence of underreporting of paternal family history and lower perceived breast cancer risk with cancer in the paternal versus maternal lineage. We observed cancer-specific perceived risks and worry for individual family history elements and also found novel "spillover" effects where a family history of one cancer was associated with altered disease perceptions of another. Having a mother with early-onset breast or ovarian cancer was strongly associated with perceived risk of breast cancer. Age, parenthood, and affected lineage were associated with disease perceptions and ran counter to empiric risks.

Conclusions: Understanding patients' formulation of risk for multiple diseases is important for public health initiatives that seek to inform risk appraisal, influence disease perceptions, or match preventive interventions to existing risk perceptions.
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http://dx.doi.org/10.1097/GIM.0b013e3181fbe485DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927459PMC
January 2011

Family history and perceptions about risk and prevention for chronic diseases in primary care: a report from the family healthware impact trial.

Genet Med 2010 Apr;12(4):212-8

Department of Family Medicine, Case Western Reserve University, Cleveland, Ohio, USA.

Purpose: To determine whether family medical history as a risk factor for six common diseases is related to patients' perceptions of risk, worry, and control over getting these diseases.

Methods: We used data from the cluster-randomized, controlled Family Healthware Impact Trial (FHITr). At baseline, healthy primary care patients reported their perceptions about coronary heart disease, stroke, diabetes, and breast, ovarian, and colon cancers. Immediately afterward, intervention group participants used Family Healthware to record family medical history; this web-based tool stratified familial disease risks. Multivariate and multilevel regression analyses measured the association between familial risk and patient perceptions for each disease, controlling for personal health and demographics.

Results: For the 2330 participants who used Family Healthware immediately after providing baseline data, perceived risk and worry for each disease were strongly associated with family history risk, adjusting for personal risk factors. The magnitude of the effect of family history on perceived risk ranged from 0.35 standard deviation for ovarian cancer to 1.12 standard deviations for colon cancer. Family history was not related to perceived control over developing diseases. Risk perceptions seemed optimistically biased, with 48-79% of participants with increased familial risk for diseases reporting that they were at average risk or below.

Conclusions: Participants' ratings of their risk for developing common diseases, before feedback on familial risk, parallels but is often lower than their calculated risk based on family history. Having a family history of a disease increases its salience and does not change one's perceived ability to prevent the disease.
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http://dx.doi.org/10.1097/GIM.0b013e3181d56ae6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4037165PMC
April 2010

Causal beliefs about obesity and associated health behaviors: results from a population-based survey.

Int J Behav Nutr Phys Act 2010 Mar 3;7:19. Epub 2010 Mar 3.

Boston University School of Public Health, Boston MA, USA.

Background: Several genetic variants are associated with obesity risk. Promoting the notion of genes as a cause for obesity may increase genetically deterministic beliefs and decrease motivation to engage in healthy lifestyle behaviors. Little is known about whether causal beliefs about obesity are associated with lifestyle behaviors. Study objectives were as follows: 1) to document the prevalence of various causal beliefs about obesity (i.e., genes versus lifestyle behaviors), and 2) to determine the association between obesity causal beliefs and self-reported dietary and physical activity behaviors.

Methods: The study data were drawn from the 2007 Health Information National Trends Survey (HINTS). A total of 3,534 individuals were included in the present study.

Results: Overall, 72% of respondents endorsed the belief that lifestyle behaviors have 'a lot' to do with causing obesity, whereas 19% indicated that inheritance has 'a lot' to do with causing obesity. Multinomial logistic regression analyses indicated that the belief that obesity is inherited was associated with lower reported levels of physical activity (OR = 0.87, 95% CI: 0.77-0.99) and fruit and vegetable consumption (OR = 0.87, 95% CI: 0.76-0.99). In contrast, the belief that obesity is caused by lifestyle behaviors was associated with greater reported levels of physical activity (OR = 1.29, 95% CI: 1.03-1.62), but was not associated with fruit and vegetable intake (OR = 1.07, 95% CI: 0.90-1.28).

Conclusions: Causal beliefs about obesity are associated with some lifestyle behaviors. Additional research is needed to determine whether promoting awareness of the genetic determinants of obesity will decrease the extent to which individuals will engage in the lifestyle behaviors essential to healthy weight management.
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http://dx.doi.org/10.1186/1479-5868-7-19DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2842229PMC
March 2010