Family Health History Information Research Articles

Are College Students Interested in Family Health History Education? A Large Needs Assessment Survey Study.

Family health history (FHH) is an essential foundation for personalized disease prevention. As the incidence of early-onset chronic diseases is increasing among college students, it is important to provide them with the education required to learn about their FHH. This study aimed to assess college students' interest in receiving FHH education, preferred topics, and desired learning methods. We invited college students to complete an online survey from a large research-intensive university. A total of 2276 college students completed the survey. Nearly half of the participants self-identified as non-Hispanic white (45.5%). Slightly more than half of the sample (53.9%) were not interested in receiving FHH education mainly due to low prioritization. Among those who expressed interest in obtaining FHH education, the three most desired learning topics were the ability to interpret FHH information (76.1%), the application of FHH in disease prevention (72.0%), and FHH information collection strategies (63.6%). Computer-based learning (51.1%) was the most preferred educational method. Moreover, females, older individuals, those who have FHH in first-degree relatives, and participants who were members of racial and ethnic groups showed greater interests in receiving FHH education (ps < 0.05). Strategies to promote college students' awareness, collection, and use of FHH are needed.

'I think we just do it once and leave it …' The collection and utility of family health history in general practice in Aotearoa New Zealand: a qualitative study.

Introduction The value of family health history as a means to understanding health risk has been long known. Its value in a precision medicine context is also now becoming apparent. General practitioners (GPs) are considered to play a key role in the collection, and investigation, of family health history, but it remains widely reported as being both poorly and infrequently undertaken. Little is known about this practice in Aotearoa New Zealand (NZ). Aim This study aimed to explore current practices in relation to the ascertainment of family health history, with a view towards precision medicine. Methods Semi-structured interviews were conducted with 10 GPs recruited from one urban area of NZ. The interviews were subjected to a thematic analysis. Results Family health history information was used to varying degrees in four areas - risk ascertainment, patient engagement with a diagnosis, social context and building relationships. Patient cultural considerations were rarely mentioned. Reliability of information provided by patients, resource constraints, context driven consults and electronic health record limitations are potential indicators of current limits of family health history. Discussion Our findings present a baseline of current practice and echo larger studies from overseas. As precision medicine is not yet routine, a unique opportunity exists for consideration to be given to establishing specific roles within the NZ health system to enable equitable practice of, and subsequent health gains from, the use of family/whānau health history information as part of precision medicine.

Factors Influencing Family Health History Collection among Young Adults: A Structural Equation Modeling.

Family health history (FHH) can serve as an entry point for preventive medicine by providing risk estimations for many common health conditions. College is a critical time for young adults to begin to understand the value of FHH collection, and to establish healthy behaviors to prevent FHH-related diseases. This study seeks to develop an integrated theoretical framework to examine FHH collection behavior and associated factors among college students. A sample of 2670 college students with an average age of 21.1 years completed a web-based survey. Less than half (49.8%) reported actively seeking FHH information from their family members. Respondents’ knowledge about FHH were generally low. Structural equation modeling findings suggested an adequate model fit between our survey data and the proposed integrated theoretical framework. Respondents who were members of racial/ethnic minority groups exhibited higher levels of anxiety and intention to obtain FHH information but had lower confidence in their ability to gather FHH information than non-Hispanic White respondents. Therefore, educational programs designed to enhance the level of young adults’ FHH knowledge, efficacy, and behavior in FHH collection, and change subjective norms are critically needed in the future, especially for these who are members of racial/ethnic minority groups.

EP506: Implementing diverse community engagement studios: The Family History and Cancer Risk Study (FOREST) at Vanderbilt and Meharry Medical College

From the earliest recognition of families with a high rate of cancer over 100 years ago, researchers have been focused on the genetic underpinnings of inherited cancers; however, identification remains a significant challenge due to persistent barriers across patient, provider, and health system stakeholders, despite recent advances in the development of electronic medical records (EMR) and risk prediction tools that use family health history (FHH) information. Innovations in bioinformatic technology hold great promise in overcoming many of these barriers, particularly with the development of FHH applications that collect and analyze family data and SMART-on-FHIR capabilities that can integrate third-party apps with the EMR.

EP489: Exploring engagement and uptake of a comprehensive family history-based cancer risk assessment tool

It is challenging to identify individuals at risk of a hereditary cancer syndrome as it requires assessment of both personal and family health history, the latter of which may not be routinely collected and/or updated by healthcare providers. A possible solution is to use a patient-facing computer platform that electronically collects family health history (FHH) information for hereditary cancer syndromes and other health conditions. This could improve genomic healthcare by identifying at-risk individuals in a health system.

Exploring the Role of Community Health Workers in Improving the Collection of Family Health History: A Pilot Study.

Community health workers (CHWs) have been successful partners in addressing public health and health care challenges but have yet to be engaged in efforts to promote family health history (FHH) collection. FHH information is a key factor in determining disease risk and supporting screening and prevention across multiple diseases. The collection of FHH information could be facilitated by the existing cadre of CHWs already working alongside clients and families. In this qualitative study, we interviewed 30 CHWs from Georgia to better understand the current level of knowledge about FHH, perceptions of how FHH collection aligns with their role, and barriers and facilitators in order to support more active involvement of CHWs in FHH collection. Interviews were completed, transcribed, and double coded by three study team members. More than half of CHWs reported knowing their own FHH information. CHWs showed a strong interest and support for collecting FHH in their job, despite limited current engagement in this role. CHWs acknowledged the collection of FHH as being an opportunity to empower clients to have conversations with their providers. To better support this work, CHWs requested training in using and integrating FHH tools into their workflow and support in communicating about FHH with their clients. Our findings suggest that with support and training, CHWs are uniquely positioned to improve FHH collection among their client base. Ultimately, improving FHH collection skills among the population could allow for better integration of risk-stratified approaches that are informed by FHH information for the prevention, management, and treatment of disease.

Ethical Considerations in the Use of Direct-to-Consumer Genetic Testing for Adopted Persons

The use of DTC genetic testing to identify health risks is increasingly popular. This is particularly the case for adopted persons, who often lack access to family health history information and who may see genetic testing as the best (and only) way to identify potential inherited disease risks. However, the development of genetic testing to fill gaps in family health history information for adopted persons has been hindered by several challenges including ethical concerns surrounding appropriate uses of biotechnology and its application to medicine and public health. Here, we will approach these concerns in the context of the “Four Principles Approach” articulated by Beauchamp and Childress. Through this approach, it is our aim to illustrate the need for careful consideration of often neglected risks and benefits before adoptees make the decision to engage genetic testing.

Abstract B090: Exploring the roles of CHWs in improving uptake of family health history assessment among patients and providers: Implications for cancer risk reduction and prevention among minority populations

Abstract The collection of family health history (FHH) is integral to the implementation of population screening that could identify those at high cancer risk who could benefit most from life-saving interventions. Although most individuals believe FHH is important to their health, few actually collect or know their FHH. Recent findings have identified a reduced likelihood of FHH collection among minority populations who may already be at an increased risk for familial cancers such as kidney, cervical, prostate, ovarian, and triple-negative breast cancer. The community health worker (CHW) workforce is especially well positioned to address these challenges in FHH collection, as they are trusted members of their community and well recognized for their work in creating community-clinical linkages. Engaging CHWs in promoting FHH collection could help improve cancer risk assessment utilization among minority populations. We conducted 30 semistructured interviews with CHWs in Georgia to understand their current roles and opportunities to expand their roles to include the gathering and sharing FHH information. Interview questions were guided by the Consolidated Framework for Implementation Research and also included current engagement in FHH collection, beliefs and understanding of FHH collection, and perceived training needs to complete an FHH record using an FHH collection tool. All interviews were double coded in MAXQDA using a codebook developed, adapted, and agreed upon by the research team. Findings demonstrate that most CHWs believe that there is value in collecting FHH and that they are well suited to gather basic FHH information, but the majority had no experience collecting FHH, either formally as part of their jobs or from their own family members. Some concerns raised about this role include the potential for community members to be resistant to providing the information, CHWs' lack of medical knowledge required to address questions from clients about genetics, and the potential complexity of information needed to complete FHH tools. CHWs also provided recommendations for reducing the burden of FHH collection such as tutorials about how to gather accurate and complete information. They also suggested providing resources to clients that focus on the importance of knowing FHH and how it can be used to improve health and become knowledgeable about cancer risk-reduction resources and prevention strategies. Understanding opportunities for CHWs to extend their role in this way could help improve health care delivery and access by enhancing patient-provider communication about FHH in order to tailor recommendations, prevention, and treatment of diseases. Results from this study may inform efforts to strengthen the utility of existing FHH collection tools and accompanying materials to promote the uptake of FHH assessment among patients and providers. Citation Format: Caitlin G. Allen, Lawrence McKinney, Brittaney Bethea, Cam Escoffery, Gail McCray, Colleen McBride, Tabia Akintobi. Exploring the roles of CHWs in improving uptake of family health history assessment among patients and providers: Implications for cancer risk reduction and prevention among minority populations [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr B090.

The Influence of Family Communication Patterns on the Processing of Messages to Increase Family Health History Seeking Intentions

ABSTRACT The current study extends family communication patterns (FCP) research to assess how family communication schemata (conversation and conformity orientation dimensions) influence systematic processing of health appeals intended to persuade individuals to seek family health history information, emphasizing an updated conceptualization of family conformity (i.e., the expanded conformity orientation scale). Our results suggest that conversation orientation and the conformity dimension of parental control are the primary drivers of systematic processing of family health history messages. Systematic processing, in turn, was significantly associated with more positive attitudes and greater intentions to seek health information from family members. Our results suggest family communication patterns may impact individual engagement with family health history campaign messages, thus campaign designers may want to consider how best to tailor messages to match family communication characteristics.

An electronic family health history tool to identify and manage patients at increased risk for colorectal cancer: protocol for a randomized controlled trial

BackgroundColorectal cancer is the fourth most commonly diagnosed cancer in the United States. Approximately 3–10% of the population has an increased risk for colorectal cancer due to family history and warrants more frequent or intensive screening. Yet, < 50% of that high-risk population receives guideline-concordant care. Systematic collection of family health history and decision support may improve guideline-concordant screening for patients at increased risk of colorectal cancer. We seek to test the effectiveness of a web-based, systematic family health history collection tool and decision support platform (MeTree) to improve risk assessment and appropriate management of colorectal cancer risk among patients in the Department of Veterans Affairs primary care practices.MethodsIn this ongoing randomized controlled trial, primary care providers at the Durham Veterans Affairs Health Care System and the Madison VA Medical Center are randomized to immediate intervention or wait-list control. Veterans are eligible if assigned to enrolled providers, have an upcoming primary care appointment, and have no conditions that would place them at increased risk for colorectal cancer (such as personal history, adenomatous polyps, or inflammatory bowel disease). Those with a recent lower endoscopy (e.g. colonoscopy, sigmoidoscopy) are excluded. Immediate intervention patients put their family health history information into a web-based platform, MeTree, which provides both patient- and provider-facing decision support reports. Wait-list control patients access MeTree 12 months post-consent. The primary outcome is the risk-concordant colorectal cancer screening referral rate obtained via chart review. Secondary outcomes include patient completion of risk management recommendations (e.g. colonoscopy) and referral for genetic consultation. We will also conduct an economic analysis and an assessment of providers’ experience with MeTree clinical decision support recommendations to inform future implementation efforts if the intervention is found to be effective.DiscussionThis trial will assess the feasibility and effectiveness of patient-collected family health history linked to decision support to promote risk-appropriate screening in a large healthcare system such as the Department of Veterans Affairs.Trial registrationClinicalTrials.gov, NCT02247336. Registered on 25 September 2014.

Patterns of Communicating About Family Health History: Exploring Differences in Family Types, Age, and Sex

Family communication environments can be a facilitator or barrier to family cooperation and communication in collecting family health history (FHH) information, which can facilitate disease prevention. This study examined the direct and indirect effects of family communicative environments on whether individuals actively collected FHH information, as well as how age and sex differences complicate this relationship. Participants (N = 203) completed online surveys, answering close-ended questions about their family's communication patterns, how open their family is to communicating about FHH, and whether they have actively collected FHH information. Results show there was a direct effect between open family communicative environments and active collection, and found FHH communication openness was a positive partial mediator. Conversely, family environments stressing hierarchy and homogeneity of beliefs inhibit open communication about and collection of a FHH. Analysis of age and sex as moderators in the models showed a significant conditional indirect effects, which grew stronger as participants' age increased. Furthermore, results showed open family communicative environments lead to active collection of FHH for women, but not for men. Results confirm the importance of family communicative environments in facilitating or inhibiting FHH collection. Findings from the current study provide intervention points for practitioners to advise patients on the importance of collecting a FHH and guide behaviors to collect FHH information based on the family communicative environment.

Family Health History Tools as Communication Resources: Perspectives from Caucasian, Hispanic, and Pacific Islander Families

ABSTRACT Many tools facilitate gathering family health history (FHH) information. Public health initiatives have focused on improving FHH communication. Research indicates that tools remain largely unused in non-clinical settings and people tend to refrain from engaging in FHH communication. Research also indicates that cultural and family relationship factors influence FHH communication and tool use. This study investigated FHH tools as resources for FHH communication within Caucasian, Hispanic, and Pacific Islander families. Interviews with 10 family dyads from each racial/ethnic group included opportunities for participants to evaluate two FHH tools. Using structurating activity theory, the qualitative analysis revealed that participants viewed the tools as a structure for FHH information, a guide for how to communicate about FHH, and a source for stories about family health. Results are discussed in terms of how family system elements and social structures shape perceptions and use of FHH tools. Conclusions include implications for research and practice.

Patient understanding of, satisfaction with, and perceived utility of whole-genome sequencing: findings from the MedSeq Project

PurposeTo examine patients’ experiences with clinical use of whole genome sequencing (WGS).MethodsA randomized trial compared primary care and cardiology patients receiving WGS and family health history (FH) information or FH information alone. 202 patients were surveyed before (BL) and up to six months (6M) after disclosure of results.ResultsPatients (mean age = 55 years; 50% female; 81% college graduates) reported low levels of decisional regret (mean: 7.1/100) and high satisfaction with physicians’ disclosure of results (median = 29 / 30). Compared to the FH-only arm, patients receiving WGS results were more likely to report learning accurate disease risk information (OR = 7.45) and findings influential for medical treatment (OR = 2.39). Sessions where WGS results were disclosed took longer (30 vs. 15 minutes), particularly for primary care patients. Patients’ expected utility of sequencing at BL was higher than perceived utility at 6M in several domains, including impacting medical decision-making (87% vs. 54%) and influencing medication choice (73% vs. 32%).ConclusionsPatients were satisfied with their physicians’ communication of WGS results and perceived them as medically useful. Discrepancies in expected versus perceived utility of WGS results suggest a need to temper patients’ expectations about its potential benefits.

Adoptees' Pursuit of Genomic Testing to Fill Gaps in Family Health History and Reduce Healthcare Disparity.

In the symposium of stories by adoptees who have faced health issues without family health history information, genomic testing is considered as a potentially life-saving means for adoptees to obtain family medical information. The authors share feelings of loss, frustration in healthcare settings, fear of unknown genetic susceptibility to disease, desire for knowledge and self-empowerment in medical decision making, and uncertainty about the utility of genomic testing. Adoptees may pursue ancestry testing, genetic genealogy to find biological relatives, and medical genomic testing. They may choose direct-to-consumer testing because of its affordability and accessibility. Adopted persons are gaining support from healthcare professionals in their pursuit of genomic testing. The National Society of Genetic Counselors' position statement regarding genetic testing and adoption "supports consideration of genetic testing, including genome-wide testing, for adopted adults." However, predictive genomic testing of children in the adoption process is not recommended by the NSGC unless testing may affect childhood medical management. The American Society of Human Genetics and the American College of Medical Genetics and Genomics similarly recommend that genetic testing of children in the adoption process be limited to diagnostic testing for conditions for which there is timely preventative or therapeutic intervention. Going forward, there is responsibility and opportunity for national genetics and genomics societies and healthcare systems to hone their practice guidelines for genomic testing for adoptees. A successful approach will include evidence-based guidelines for genomic testing, inclusion of genetic counseling before and after testing, and return of genomic test results to adoptees' medical homes.

Healthcare Challenges Faced by Adopted Persons Lacking Family Health History Information.

An individual's genetic-relative family health history can lead to the identification of high-risk individuals and through this can result in highly effective disease prevention for those at risk. In this symposium, readers will see the very different lived experiences of adopted persons whose access to genetic-relative family health history is limited. All share a common experience of facing obstacles within the U.S. healthcare system related to lacking family health history. Genomic technologies now offer tremendous promise to fill gaps in access to this vital health information.

Autonomy, Well-Being, and the Value of Genetic Testing for Adopted Persons.

This paper argues that the value of genetic-relative family health history (GRFHx) information and the notion that lack of this information is a disadvantage can be established through its role as a nested goal in comprehensive life projects independent of documentation of particular health outcomes. Health information often plays a significant role in a person's formulation of life goals and projects, as well as in identification of plausible effective means to realize these goals. If health outcomes are valuable in part because of the nested role these play in the successful realization of a person's life projects and goals, then other, similarly nested contributors to such success must also be valued on a similar scale. Some of these other contributors to a successful life may themselves be nested with health considerations, as illustrated in the relationship that will be the focus of this paper. Health information --independent of outcomes per se - influences relationships, reproduction, and the formulation of plausible comprehensive life goals in intricate and very influential ways. Although such information may be valued in part because it is predictive of health outcomes, this relationship does not reduce such information, nor the comprehensive life goals and projects such information promotes, to health outcomes. That is, while health status can both enhance and detract from the autonomous (successful) pursuit of life projects formulated in the context of health information, the value and weight of these projects is independent of particular health status or outcomes, even while in part shaped by them.

Chinese Americans' Views and Use of Family Health History: A Qualitative Study.

ObjectiveFamily health history (FHH) plays a significant role in early disease detection and prevention. Although Asian Americans are the fastest growing U.S. immigrant group, no data exists regarding Chinese Americans’ (the largest Asian subgroup) views and use of FHH. This study examines this important issue.MethodsForty-nine adults from southern U.S. Chinese American communities participated in this qualitative, semi-structured, in-depth interview study. Interviews were audio recorded, transcribed, and analyzed with a content analysis approach.ResultsAlthough the majority of participants perceived the importance of collecting FHH, most lacked FHH knowledge and failed to collect FHH information. Barriers affecting FHH collection and discussion among family members included long-distance separation from family members, self-defined “healthy family,” and Chinese cultural beliefs. Lack of doctors’ inquiries, never/rarely visiting physicians, self-defined “healthy family,” perceived insignificance of discussing FHH with doctors, and Chinese cultural beliefs were the obstacles in communicating FHH with physicians.ConclusionsChinese Americans had limited usage of their FHH and faced cultural, distance, knowledge-, and healthcare system-related barriers that influenced their FHH use. Developing FHH education programs for Chinese Americans is highly recommended.

Family health history: an essential starting point for personalized risk assessment and disease prevention.

Family health history (FHH) information is well established as a basis for assessing a patient's personal disease risk, but is underutilized for diagnosis and making medical recommendations. Epidemiological and genetic information have heightened the value of FHH to an individual's health. This has motivated the development of new FHH collection tools and strategies for family members, but will require greater awareness and knowledge by both patients and practitioners. FHH will be increasingly important as genomic data become a mainstay of medical diagnostics, since in many cases, a medically important FHH results from lineage-specific genetic variants. The impact of complementary FHH and genomic information will drive the pursuit of personalized and precise targeting of treatments and interventions aimed at maintaining patient health.

Let's Move Together.

Due to shared health behaviors and disease risk, families may be more effective targets for health promotion. This study assessed whether providing family health history (FHH)-based risk information for heart disease and diabetes affected encouragement to engage in physical activity (PA) and healthy weight (HW) maintenance and co-engagement in physical activity among 320 Mexican-origin parents and their 1,081 children. At baseline and 10 months, parents indicated who they encouraged and who encouraged them to engage in PA/HW, and with whom they co-engaged in PA. Households were randomized to receive FHH-based assessments either by one or all adult household members. Primary analyses consisted of regression analyses using generalized estimating equations. At baseline, parents reported encouraging their child for both PA and HW in 37.6% of parent-child dyads and reported receiving children's encouragement for both in 12.1% of dyads. These increased to 56.8% and 17.5% at 10 months ( p < .001). Co-engagement in PA increased from 11.4% to 15.7% ( p < .001), with younger children (30.4%) and mother-daughter dyads (26.8%) most likely to co-engage at 10 months. Providing FHH-based risk information to all adult household members (vs. one) was associated with increased parent-to-child encouragement of PA/HW ( p = .011) at 10 months but not child-to-parent encouragement. New encouragement from parent-to-child ( p = .048) and from child-to-parent ( p = .003) predicted new 10-month PA co-engagement. Providing FHH information on a household level can promote parental encouragement for PA/HW, which can promote greater parent-child co-engagement in PA. In this high-risk population with a cultural emphasis on family ties, using FHH-based risk information for all adult household members may be a promising avenue to promote PA.

Abstract C23: Understanding the breast cancer experiences of rural Latina breast cancer survivors in Eastern North Carolina

Abstract Background: While there is a wealth of information available concerning the barriers to breast cancer screening and the psychosocial concerns that minority women have regarding self-breast exams and mammography, there is still a limited understanding concerning breast cancer survivorship among diverse groups of women. To address issues relevant to the increasing numbers of diverse women with breast cancer, the purpose of this pilot study was to gain an in-depth understanding of the breast cancer survivors' experiences in Eastern North Carolina (ENC). Specifically, this study aims to investigate barriers and facilitators in accessing breast cancer treatment, as well as possible challenges in adherence to survivorship plans to ensure life-long, cancer-free health. Methods: Through a mixed-method approach of surveys and face-to-face interviews, we can better understand cultural and contextual factors of cancer survivorship. The sample size for this pilot study is ten Latina breast cancer survivors and two key-informants that run the only Latina cancer support group in the ENC region. In-depth interviews provided an environment where breast cancer survivors could share their experiences and provide insight into challenges they experienced during their treatment phase, and after. Surveys were also utilized to gather basic demographic information and family health history information from each participant. The survey contains questions regarding general information about participants' breast cancer prognosis, including age at which they were diagnosed, stage and treatment received. Interviews lasted approximately one hour and were audio-tape recorded, transcribed and analyzed using qualitative data analysis techniques. Results: Preliminary themes include barriers to getting yearly recommended screening exams before diagnosis (i.e. no insurance, not recommended age for screenings); experience with breast cancer diagnosis; psychosocial factors (i.e. quality of life, fear and anxiety, coping mechanisms, support systems, and body changes); and quality of care factors (i.e. doctor-patient relationship, treatment, side-effects of treatment, and being adherent to survivorship plan). Final analysis of data will be presented at the conference. Conclusion: This study will provide novel information regarding barriers faced by Latinas in “new-growth” communities, specifically the impact of sociocultural factors, structural barriers to accessing breast cancer care and resources, patient-doctor relationships, and survivorship. Our findings also highlights opportunities for intervention that can contribute to a seamless transition through the continuum of breast cancer care. Citation Format: Essie T. Torres, Alice R. Richman. Understanding the breast cancer experiences of rural Latina breast cancer survivors in Eastern North Carolina. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr C23.