Recall of disclosed Apolipoprotein E genotype and lifetime risk estimate for Alzheimer's disease: The REVEAL Study

Purpose: To determine whether individuals recall their apolipoprotein E genotype and numeric lifetime risk estimates after undergoing a risk assessment for Alzheimer's disease.Methods: One-hundred and four participants underwent Alzheimer's disease risk assessment that included disclosure of apolipoprotein E genotype and a numeric lifetime risk estimate.Results: At six weeks and one year post-disclosure, 59% and 48% of participants, respectively, recalled their lifetime risk estimate, and 69% and 63% recalled their apolipoprotein E genotype. Participants were more likely to remember their genotype than numeric lifetime risk estimate at one year (P < 0.05). Apolipoprotein E ɛ4-positive participants had better recall of their genotype at both time points (P < 0.05). Participants were more likely to recall whether they carried the “risk-enhancing form of apolipoprotein E” than their specific genotype (P < 0.05).Conclusions: These data suggest that apolipoprotein E genotype, especially the presence of an ɛ4 allele, is more memorable than a numeric risk estimate for Alzheimer's disease. Participants recalled genotype information in a more simplified, binary form. Health professionals testing for complex disorders such as Alzheimer's disease must find an appropriate balance between communicating risk in an understandable format and addressing the probabilistic nature of the information.

[1]  A. Weinberg,et al.  Demographic, psychosocial, and objective risk factors related to perceived risk of skin cancer. , 2009, Journal of cancer education : the official journal of the American Association for Cancer Education.

[2]  J. Shenker Diagnosis and Management of Alzheimer??s Disease and Other Dementias, 2nd Edition , 2007 .

[3]  R. Green,et al.  Predictive Genetic Testing for Alzheimer's Disease: Impact upon Risk Perception , 2005, Risk analysis : an official publication of the Society for Risk Analysis.

[4]  S. Domchek,et al.  Patients' resistance to risk information in genetic counseling for BRCA1/2. , 2005, Archives of internal medicine.

[5]  W. Otten,et al.  Feeling at risk: How women interpret their familial breast cancer risk , 2004, American journal of medical genetics. Part A.

[6]  Jonathan Baron,et al.  Intended Message Versus Message Received in Hypothetical Physician Risk Communications: Exploring the Gap , 2004, Risk analysis : an official publication of the Society for Risk Analysis.

[7]  R. Green,et al.  Estimating risk curves for first-degree relatives of patients with Alzheimer’s disease: The REVEAL study , 2004, Genetics in Medicine.

[8]  P. Hopwood,et al.  Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services , 2003, European Journal of Human Genetics.

[9]  P. Butow,et al.  Women’s preferences and consultants’ communication of risk in consultations about familial breast cancer: impact on patient outcomes , 2003, Journal of medical genetics.

[10]  R. Green,et al.  Reasons for Seeking Genetic Susceptibility Testing Among First‐Degree Relatives of People With Alzheimer Disease , 2003, Alzheimer disease and associated disorders.

[11]  B. Meiser,et al.  What is the impact of genetic counselling in women at increased risk of developing hereditary breast cancer? A meta-analytic review. , 2002, Social science & medicine.

[12]  W Burke,et al.  Categorizing genetic tests to identify their ethical, legal, and social implications. , 2001, American journal of medical genetics.

[13]  B. Rimer,et al.  General Performance on a Numeracy Scale among Highly Educated Samples , 2001, Medical decision making : an international journal of the Society for Medical Decision Making.

[14]  H Kunreuther,et al.  Determinants of Priority for Risk Reduction: The Role of Worry , 2000, Risk analysis : an official publication of the Society for Risk Analysis.

[15]  Michael J. Watson,et al.  The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer , 1999, British Journal of Cancer.

[16]  A. Howell,et al.  Psychological support needs for women at high genetic risk of breast cancer: some preliminary indicators , 1998, Psycho-oncology.

[17]  C. Randolph,et al.  The Repeatable Battery for the Assessment of Neuropsychological Status (RBANS): preliminary clinical validity. , 1998, Journal of clinical and experimental neuropsychology.

[18]  A. Cull,et al.  The use of videotaped information in cancer genetic counselling: a randomized evaluation study. , 1998, British Journal of Cancer.

[19]  P. Harper,et al.  What do we mean by genetic testing? , 1997, Journal of medical genetics.

[20]  A. Goate,et al.  Exploring the etiology of Alzheimer disease using molecular genetics. , 1997, JAMA.

[21]  A. Clarke,et al.  Outcomes and process in genetic counselling , 1996, Clinical genetics.

[22]  R. Eeles,et al.  Familial breast cancer: a controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counselling. , 1996, British Journal of Cancer.

[23]  N. Relkin,et al.  Apolipoprotein E genotyping in Alzheimer's disease , 1996, The Lancet.

[24]  N. Risch,et al.  Statement on use of apolipoprotein E testing for Alzheimer disease. American College of Medical Genetics/American Society of Human Genetics Working Group on ApoE and Alzheimer disease. , 1995, JAMA.

[25]  B. Rimer,et al.  Awareness of heightened breast cancer risk among first-degree relatives of recently diagnosed breast cancer patients. The High Risk Breast Cancer Consortium. , 1995, Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology.

[26]  R F Nease,et al.  Perceptions of breast cancer risk and screening effectiveness in women younger than 50 years of age. , 1995, Journal of the National Cancer Institute.

[27]  B. Rimer,et al.  Effects of individualized breast cancer risk counseling: a randomized trial. , 1995, Journal of the National Cancer Institute.

[28]  A. Howell,et al.  The impact of genetic counselling on risk perception in women with a family history of breast cancer. , 1994, British Journal of Cancer.

[29]  R. Croyle,et al.  Psychological minimization of cholesterol test results: moderators of appraisal in college students and community residents. , 1993, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[30]  M. Pericak-Vance,et al.  Apolipoprotein E: high-avidity binding to beta-amyloid and increased frequency of type 4 allele in late-onset familial Alzheimer disease. , 1993, Proceedings of the National Academy of Sciences of the United States of America.

[31]  P. Atkinson,et al.  Lay constructions of genetic risk , 1992 .

[32]  V. Reyna,et al.  Fuzzy-trace theory and framing effects in choice: Gist extraction, truncation, and conversion , 1991 .

[33]  R. Green,et al.  Genetic susceptibility testing versus family history–based risk assessment: Impact on perceived risk of Alzheimer disease , 2005, Genetics in Medicine.

[34]  Howard Leventhal,et al.  The self-regulation of health and illness behaviour. , 2003 .

[35]  D. Galton,et al.  Apolipoprotein E genotyping in Alzheimer's disease. , 1996, Lancet.

[36]  S. Lovestone,et al.  Consensus Statement on Predictive Testing for Alzheimer Disease , 1995, Alzheimer disease and associated disorders.

[37]  N. Holtzman,et al.  Assessment of risk by pregnant women: implications for genetic counseling and education. , 1986, Social biology.

[38]  F. Fraser,et al.  Genetic counseling: provision and reception of information. , 1979, American journal of medical genetics.