Family Health History Tools Research Articles

Personalizing prenatal care using family health history: identifying a panel of conditions for a novel electronic genetic screening tool.

In the age of genomic medicine, family health history (FHH) remains an important tool for personalized risk assessment as it can inform approaches to disease prevention and management. In primary care, including in prenatal settings, providers recognize that FHH enables them to assess the risk for birth defects and complex conditions that not only affect the fetus health, but also the mother's. However, many providers lack the time to gather FHH or the knowledge to confidently interpret the data. Electronic tools providing clinical decision support using FHH data can aid the busy provider with data collection and interpretation. We describe the scope of conditions included in a patient-entered FHH tool that provides clinical decision support and point-of-care education to assist with patient management. This report details how we selected the conditions for which it is appropriate to use FHH as a means to promote personalized medicine in primary prenatal care.

"You don't have to keep everything on paper": African American women's use of family health history tools.

Little is known about African American women's collection of family health history (FHH) information and use of FHH tools. Most FHH research has investigated tools that use a biomedical paradigm, but other kinds of tools, such as those that include information about family social context, have been developed for use in diverse populations. Using mixed methods, we interviewed 32 African American women about behavioral steps to collecting FHH, family communication about health, and reactions to a biomedical FHH tool. Participants chose one of two FHH tools to take home. A follow-up call three weeks later assessed tool use. Many participants expressed support for writing down FHH information, but at baseline few had done so; most participants who had collected FHH information had done so verbally. Participants reacted positively to the biomedical FHH tool used during the interview, with many saying it allowed them to see patterns in their FHH. At follow-up, 67% reported using their FHH tool, primarily to promote discussion among family members; only 32% used the tool to write down FHH information. Although participants thought collecting FHH information was important and had positive reactions to both tools, the majority did not use the tools to write down information and instead collected FHH informally. These findings underline the importance of separating the components of FHH collection behaviors to analyze the steps used in FHH creation. Practitioners should consider additional methods of encouraging patients to create written FHHs in order to share the information with health care providers.

Improving Learning About Familial Risks Using a Multicomponent Approach: The Grace Program

To enhance learning (knowledge, attitudes and practices) about the importance of family health history (FHH) information and familial risks. A pre-post design with one group was employed in this study. Five learning sessions were conducted with a community-based sample (n = 75) recruited from five counties in Texas, USA. Each learning session included: a short online video; enactive instructions on how to use the online Surgeon General FHH tool; and a presentation on how to assess familial risks. Participants completed the pre-post knowledge, attitudes and practices questionnaires and the study's satisfaction survey, and participated in a short focus group interview. Participants' average age was 48.1 ± 13.3 years. Over half of the participants (79%) were female, and 55% described themselves as non-Hispanic White. Our findings showed significant changes (p < 0.05) in participants' specific knowledge about factors that affect their familial risks. Similarly, significant changes (p < 0.05) in participants' attitudes toward familial risks assessment for common disease complications and confidence in controlling these risks have been documented. Participants' reported a high level of satisfaction in using online FHH tools, yet no significant change (p > 0.05) was detected in their reported practices regarding sharing FHH information with their providers or relatives. Focus group interviews revealed that participants were uncertain about providers' or relatives' reactions to sharing FHH information. Using different learning styles may have a significant impact on improving knowledge and attitudes about familial risks.

Mothers’ Perceptions of Family Health History and an Online, Parent-Generated Family Health History Tool

Family health history (FHH) can identify families at increased risk for disease. Purpose. To learn mothers' (1) perceptions of the benefits of FHH and (2) willingness to complete a FHH tool, My Family Health Portrait (MFHP). Methods. Qualitative in-depth interviews were conducted with mothers recruited through Cincinnati Children's Hospital. Deductive and inductive codes were developed. Results. A total of 25 mothers were interviewed. Perceived benefits included keeping the pediatrician informed (n = 12; 48%) and preventive screenings recommended based on FHH (n = 10; 40%). Participants had positive impressions of MFHP and felt that it was user-friendly (n = 17; 68%). Lack of FHH knowledge was the most common challenge to completing MFHP, but most respondents stated that they would be able to complete MFHP prior to their child's medical appointment (n = 23; 92%). Conclusion. Mothers are interested in and may be motivated to complete a parent-generated FHH prior to a pediatric appointment. Future research should focus on FHH implementation in practice.

Using a “genomics tool” to develop disease prevention strategy in a low-income setting: lessons from the podoconiosis research project

Genomics research is making significant contributions to our understanding of the biology and treatment of several human diseases. With varying degrees of success, genomics has also contributed to the development of new diagnostic tools and prevention strategies in the public health settings (Brand et al. 2008). A high proportion of diseases with significant public health impact occur due to the interplay between genetic and environmental factors. In this regard, conducting genomics research on diseases with strong environmental determinants is useful not only to identify genetic causes but also to improve public health approaches that aim to modify environmental risk factors (Agurs-Collins et al. 2008; Burke et al. 2010). Genomics research may contribute to the latter by presenting evidence for stratifying targeted population by level of genetic risk. This risk stratification approach has the potential to refine disease prevention strategies by more effectively targeting individuals differentially affected by the disease (Khoury et al. 2005). Moreover, given that most common complex diseases have both genetic and environmental components, community health interventions that utilize information from both risk factors promise to have higher impact (Morabia and Costanza 2005). Family health history (FHH) is the most commonly applied genomics/genetics tool in the stratification of disease risk at community level. FHH of a disease is a composite indicator of the effects of factors such as genetics, environment, culture, behavior, and the complex interplay between these factors in families. It is a “low tech” but powerful community health genomics tool for risk prediction and stratification, disease prevention and control, and health promotion (Yoon et al. 2002). For example, a study showed that 86 % of early strokes aggregated in 11 % of families, and 72 % of all early chronic heart disease cases clustered in only 14 % of families (Williams et al. 2001), demonstrating the efficiency of FHH in predicting disease risk (Scheuner 2003). Moreover, a randomized clinical trial showed effectiveness of family-oriented education and behavioral interventions. Individuals that received preventive messages tailored to an individual's familial risk had more compliance to the recommendations than those that received standard prevention messages (Ruffin et al. 2011). Despite existing knowledge gaps, the important role of the FHH tool for clinical and primary health practice was reflected in the National Institutes of Health's Consensus Development Program (http://consensus.nih.gov/2009/familyhistory.htm). Importantly, FHH offers unique values for disease prevention in low-income countries for several reasons including the fact that it is well proven, free, and is readily available to all persons (Guttmacher et al. 2004). However, there is paucity of practical evidence on applicability of FHH for informing disease prevention programs in low-income countries, particularly in Africa. The aim of this article is to describe a practical lesson gained from epidemiologic and genetic studies in Ethiopia that informed community-based prevention approaches for targeting children at high risk for podoconiosis. First, we provide a brief description of podoconiosis and the resource challenges of prevention in endemic communities. Second, we review evidence for the role of genetic and environmental risk factors for podoconiosis, and the usefulness of FHH as a “genomics tool” capturing both risk factors for identification of high risk individuals and resource targeting. Third, we discuss an experience from a pedigree study and a community-based genomics research project that demonstrated the scientific basis and feasibility of FHH. Fourth, we highlight the practical application of this approach by the local community-oriented organization in developing a model podoconiosis prevention program that targets children at high risk. Finally, we point out a strategic direction that can be implemented at primary health care facilities in Ethiopia for systematizing and scaling up the implementation of FHH to speed up elimination of podoconiosis.

The Use of a Family History Risk Assessment Tool within a Community Health Care System: Views of Primary Care Providers

Primary care providers (PCPs) offered input regarding the incorporation of a family health history (FHH) risk assessment tool into a community health care system (CHCS). Sixteen PCPs participated in one of three focus groups. Perceived impediments included the lack of standard screening guidelines, effective screening tests, genetic counseling resources, and services for high-risk patients. The PCPs were concerned about their level of expertise, the cost of preventive health care, and genetic discrimination. They also were concerned about the use of a FHH tool by oncologists within the CHCS because of communication gaps between oncologists and PCPs, lack of clarity regarding follow-up and legal liability, and reimbursement issues. To integrate a FHH tool into a CHCS, PCPs will need consultation and referral services, evidence-based recommendations, and "just-in-time" educational resources. Oncologists who use the tool will need to develop a streamlined communication system with PCPs, establish clearly defined roles, and ensure patient follow-up.

Data-Based Considerations for Electronic Family Health History Applications

Family health history contains important information about the genetic and environmental factors that contribute to patterns of health and illness in families. Applications for collecting, managing, and analyzing family health history could be improved if their design were informed by an understanding of how consumers think about and report family health history. This article presents a descriptive analysis of themes from family health history interviews that have implications for development, selection, and use of family health history tools. Important themes included ways in which family is defined, including nonbiological family members and pets; ideas about health and disease, including degree of exposure and individual perceptions; and barriers to reporting family health history, including large biological families and uncertainty. Some themes identified (eg, uncertainty) have been recognized previously and continue to be important considerations. Other themes identified, such as perceptions about severity of illness or conditions and causal relationships, are newly recognized and may have implications for nurses and other providers designing, selecting, and using family health history applications.

Veterans' experience in using the online Surgeon General's family health history tool.

AIM: To assess veterans' experience and satisfaction in using the Surgeon General's (SG) online family health history (FHH) tool, and determine the perceived facilitators and barriers to using the online SG-FHH tool. MATERIALS #ENTITYSTARTX00026; METHODS: A mixed-method using both qualitative and quantitative approaches was employed in this study. A total of 35 veterans at the VA Medical Center in San Antonio, Texas, USA were invited to enter their FHH information using the online SG-FHH tool, complete the study's satisfaction survey and participate in a short semi-structured interview. The goal of the semi-structured interviews was to assess participants perceived facilitators and barriers to using the online SG-FHH tool. All participants were also provided with a printed copy of their pedigree, which was generated by the SG-FHH tool and were encouraged to share it with their relatives and providers. RESULTS: The majority of participants (91%) said that they had access to a computer with internet capability and 77% reported that they knew how to use a computer. More than two-thirds of the participants felt that items on the SG-FHH tool were easy to read and felt that FHH categories were relevant to their family's health. Approximately 94% of participants viewed the SG-FHH tool as useful, and the majority of participants (97%) indicated that they were likely to recommend the tool to others. Content analysis of the semi-structured interviews highlighted several barriers to veterans' use of the SG-FHH tool and their FHH information. These included: lack of patients' knowledge regarding their relatives' FHH, and privacy and confidentiality concerns. CONCLUSION: This study provides information on the performance and functionality of an inexpensive and widely accessible method for FHH collection. Furthermore, our findings highlight several opportunities and challenges facing the utilization of FHH information as a clinical and genomic tool at the Veterans Health Administration (VHA). The results suggest that strategies that improve veterans' knowledge regarding the importance of their FHH information and that address their concerns about privacy and confidentiality may enhance the successful implementation of FHH information into VHA clinical practice. IMPLICATIONS: identifying a locally accepted method for FHH collection and documentation which can be conducted outside of the patient visit will reduce time burdens for providers and patients and allow for a focus on other important topics during clinic visits. Improvement in familial risk screening and assessment will enable the VHA to be prepared for personalized medicine and focus their resources on promoting critically important health behaviors for populations with the highest risk of developing chronic diseases and their complications.

Iona College Community Centered Family Health History Project: Lessons Learned from Student Focus Groups

The Community Centered Family Health History project was initiated to create accessible family health history tools produced by and for the community. The project goal was to promote increased community engagement in health education by encouraging conversations among family members that would translate knowledge of family health history into healthy lifestyle choices. As one of seven community partners, Iona College participated in customizing and beta-testing the Does It Run in the Family? toolkit. Twenty-nine college students were engaged to recruit three relatives related by blood to provide feedback on the utility of the toolkit. The toolkit consists of two booklets--"A Guide to Family Health History" and "A Guide to Understanding Genetics and Health"--explaining the importance of knowing and talking about health within the family as well as basics about how conditions are passed down through generations. Twenty-two of the twenty-nine students participated in focus groups to discuss their reactions to participation in the project. Students in the focus group reported that the study participants--students and their family members--found the toolkit to be user friendly and the experience a valuable one that prompted many to take positive steps toward good health.

Community-Centered Family Health History: A Customized Approach to Increased Health Communication and Awareness

There has been little study of whether family health history (FHH) tools used by individuals, families, and communities inspire measurable changes in communication and behavior. The Community-Centered Family Health History (CCFHH) project was a collaborative endeavor among national and community-based organizations with an interest in genetics education and health. Using community- based participatory research principles as a foundation, CCFHH examined whether the Does It Run In the Family? toolkit, a set of two customizable booklets on health and genetics, encourages discussion and collection of FHH information across diverse communities. Five communities across the country measured the utility of customized versions of the Does It Run In the Family? toolkit. Each community partner recruited families, consisting of two or more blood relatives, to use the toolkit for 3 months, discuss it among their family members, and consider the implications of the health information. Pre- and postintervention surveys measured family communication about family history and disease risk and the use of FHH information in health care provider interactions. After aggregate, cross-community analysis of individual responses, from pre- to post-toolkit use family members showed increases in communication about family history of disease risk (p < .05) and in awareness about FHH (p < .05). These findings indicate that diverse communities are receptive to FHH intervention, and tailored health educational materials can lead to increased conversations and awareness about health issues across communities.

New Standards and Enhanced Utility for Family Health History Information in the Electronic Health Record: An Update from the American Health Information Community's Family Health History Multi-Stakeholder Workgroup

Family health history is a complex, multifaceted tool for assessing disease risk that can offer insight into the interplay between inherited and social factors relevant to patient care. Family health history tools in electronic health records can enable the user to collect, represent, and interpret structured data that properly supports clinical decisions. If these data can be made interoperable, important health information can be shared with minimal duplication of effort among entities involved in the continuum of patient care. This paper reviews the efforts by the American Health Information Community's Family Health History Multi-Stakeholder Workgroup to create a core data set for family health history information and to determine requirements to promote incorporation of such information in electronic health records. The Workgroup is a component of the U.S. Department of Health and Human Services' Personalized Health Care Initiative.