Knowledge, Perception, and Behaviors of Relatives of People With Premature Heart Disease

F amilial aggregation of coronary heart disease (CHD) is thought to account for 50% to 60% of total documented CHD before the age of 60 years. 1 First-degree relatives of people with premature CHD (proband) exhibit a risk that is 2 to 12 times greater than that of the general population. 2 The National Cholesterol Education Program's Adult Treatment Panel recommends screening patients with a recognized family history of premature CHD, defined as heart disease in men Ͻ55 years and women Ͻ65 years. 3However, a number of recent surveys have demonstrated that these guidelines are not widely implemented. 4 -6 Reasons for lack of screening based on family history are thought to exist at both the individual and provider levels.On the individual level, family members deny or are unaware of the familial aggregation of CHD and its risk factors.On the provider level, healthcare providers may not be engaged to identify high-risk families, conduct the screening, and intervene with relatives.To better understand the impact of a proband's premature CHD on first-degree relatives, we conducted a literature review to assess relatives' knowledge of CHD risk factors, risk perception, and implementation of and adherence to riskreducing behaviors and their management by healthcare providers.The goal of this review is to identify gaps in the literature and provide recommendations for future research. Methods and ResultsThe study design for this review was developed by a working group composed of individuals from 6 member institutions of the Centers for Disease Control and Prevention's Cardiovascular Health Intervention Research and Translation Network.We conducted a systematic literature search within MEDLINE, PsychInfo, Embase, and the Cochrane Database.Syntaxes were constructed with the use of Medical Subject Headings for the following combination: (coronary heart disease AND [early onset or premature]) AND (mass screening OR risk OR family) AND (attitudes).Each search was limited to studies in humans, articles published in peer-reviewed journals, and presentation of original data.Commentaries, essays, consensus statements, guidelines, and editorials were excluded.Bibliographies of studies that met criteria for inclusion were reviewed for other relevant studies.We defined a proband as an individual with premature CHD and included studies that defined the proband as having CHD before the age of 60 years.We included studies whose population was composed of first-degree relatives of probands and that were related to knowledge of CHD, risk perception, implementation of and adherence to risk-reducing behaviors, and management by healthcare providers.We excluded studies that assessed drugs to reduce biological levels of risk for CHD, addressed molecular or mechanistic factors related to CHD, assessed genetic associations or identified biomarkers, were related to CHD but not specifically to premature CHD, established family history as a risk factor for premature CHD, or established high prevalence of CHD risk factors among family members without addressing key topics.We identified 504 studies.After we applied exclusion criteria, 37 studies were deemed relevant by the 2 reviewers (C.J., T.G.N.T.).A review of 650 total bibliographic citations identified 10 additional studies.Two independent reviewers abstracted the data on year of publication, type of study (qualitative or quantitative), design, objective, study population, inclusion and exclusion criteria, results, and conclusions.Cardiovascular Health Intervention Research and Translation Network members met to discuss the scientific quality of each article.Each article was given a quality score by the panel of 0, 1, or 2 to represent poor, good, and excellent scientific quality on the basis of study design, population selection, existence of bias, and generalizability of results.A score of poor quality excluded the study from the final analysis.Of 47 studies, 26 studies were further excluded by the panel for not meeting inclusion criteria, and an additional 4 were excluded because of poor scientific quality.The remaining 17 articles were included in the final analysis.An organizational framework was developed to guide the discussion of the key topics for each article (Figure) and to help to identify potential gaps in the literature.We created evidence tables to summarize findings (Tables I and II in the online-only Data Supplement).Characteristics of the studies are provided in Table 1.Study designs were cross-sectional (47%), followed by randomized trials (24%), case-control studies (18%), and prospective cohorts (12%).Nearly half provided data on knowledge of CHD risk factors, management by healthcare providers, and risk perception.