Collecting Tobacco Use Information with a Web-Based Family History Tool

Background: We report here on an extension to a family health history collection and interpretation tool to gather information about tobacco usage. Diagnosis and risk assessment of heritable conditions requires a family health history. We originally developed HealthHeritage, a patient-driven web-based tool to collect, update and interpret family health histories for 89 hereditary conditions, to assist health consumers or patients and their physicians [1-3]. Tobacco use is widely acknowledged to be an important, preventable environmental aspect of health [4] and an important risk factor for many hereditary conditions in HealthHeritage. Our current effort adds collection of tobacco usage by individuals and their family members to this family history tool. Objectives: Here, we extend the original HealthHeritage to include the collection of personal and family tobacco usage history and conduct a formative evaluation of this tobacco usage data collection. This evaluation assesses comprehension and ability to answer these tobacco use questions including details important for risk assessment and research. Methods: Based on an evidence-based literature review by medical specialists, we added tobacco use as a risk factor for 9 cancers (such as pancreatic, bladder, and kidney cancer) and 14 conditions in the overlapping the areas of cardio-/neurovascular disease (e.g. atherosclerosis). We also developed a separate tobacco use risk assessment to address significant health risks associated with tobacco use that, although not currently shown to be strongly hereditable (as judged by the medical specialists review) have important health implications. Our tobacco use questions resulted from a review of the literature assessing tobacco risks and several national health surveys. We chose to combine the NHLBI Atherosclerosis Risk in Communities (ARIC) survey, and the National Health Interview Survey (NHIS) as they were the most extensive in their tobacco related questions. This met an important need of one of our stakeholders, to include comprehensive data collection deemed useful for medical researchers. We conducted a pilot evaluation of these tobacco use questions with 20 health information consumers who were patients in a Family Medicine department with a history of tobacco use. Participants were given a paper-based version of the tobacco questions; this version used screenshots of the web-based questions with instructions added to allow self-guided completion. After answering the survey participants then completed a post-survey interview. This interview clarified participant comments and questions, and went into depth about potential survey difficulties (e.g. difficulties with calculations, amount known about a relative’s tobacco use). Results: Results include overall ease with the question content including comprehension and respondent’s ability to answer. Some difficulties were identified in certain subsets of participants (e.g. older individuals) in areas such as recall of tobacco usage dates and information about their relatives. Conclusions: Our effort to integrate personal and familial tobacco use history into a comprehensive family history provides a tool with potential utility for in primary care and public health research. Our pilot evaluation suggests that, for these respondents, collection of personal and familial tobacco use history with detail sufficient for risk assessment and research is possible. We discuss recommendations to enhance data collection in these areas where recall was difficult. Furthermore, in our qualitative interviews participants expressed ideas that support a potential educational impact of the survey itself on participants; the implications of this aspect of the tool will also be discussed. | vol. | iss. | | p.1 (page number not for citation purposes) Barrett et al