Family History Information in Dallas/Fort Worth: What We’re Not Telling Patients

Purpose: Patients can be empowered to assess their own family health history (FHH) by providing accurate information that: (1) explains the importance of FHH in the context of heritable conditions and (2) outlines how to take an accurate FHH. The aim of this study is to assess the quality of information provided to patients regarding FHH prior to a clinical encounter in the Dallas/Fort Worth area. Methods: FHH information from local health organizations was collected throughout the Dallas/Fort Worth area. Information was included if published by a local health organization (or national organization with local offices) and FHH was discussed in the capacity of health risk assessment. The information was categorized based on source into the following groups: local electronic, national electronic, print, and health fair. Each source was further assessed for quality of information by a series of questions following the Genetics in Primary Care Institute (GPCI) guidelines for taking FHH and disease-specific questions based on familial risk guidelines. The percentage of positive “Yes” answers is tabulated for each category and assessment question. Results: A search for local information on FHH was conducted between June, 2014 and December, 2014. Information on FHH was provided by 48% (25/52) of outlets searched. 73 sources were included for analysis. 53% came from websites of local health organizations, 16% came from print resources, 11% came from health fairs, and 19% came from national health organizations. Of these sources, 22% were general FHH information and 88% were disease specific. Information from health fairs had the greatest proportion of guideline components (18.8%) and local electronic sources had the fewest components (12.4%). Printed information had a greater percentage of guideline components (15.5%) than electronic (14.6%). General FHH information was more likely to have guideline components (24.3%) than disease specific information. Conclusions: Difficulty in obtaining information on FHH was noted with less than half of potential resource sites providing FHH information. Few sources provided all components recommended by GPCI guidelines and differences in the quality of information between source categories (electronic vs. print) were found. Sharing FHH with a provider was only recommended 59% of the time. Here we have demonstrated a clear need for health organizations to provide FHH information to patients.