Development of a process to disclose amyloid imaging results to cognitively normal older adult research participants

Alzheimer's Research and Therapy

Volumn 7, Issue 1, 2015, Pages

  Harkins, Kristin ^a   Sankar, Pamela ^a   Sperling, Reisa ^b   Grill, Joshua D ^c   Green, Robert C ^d   Johnson, Keith A ^b   Healy, Megan ^a   Karlawish, Jason ^a  

^a UNIVERSITY OF PENNSYLVANIA   (United States)

^b MASSACHUSETTS GENERAL HOSPITAL   (United States)

^c UNIVERSITY OF CALIFORNIA   (United States)

^d BRIGHAM AND WOMEN S HOSPITAL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

AMYLOID;

AGED; ALZHEIMER DISEASE; ANXIETY; ANXIETY ASSESSMENT; ARTICLE; COGNITION ASSESSMENT; COMMUNICATION SKILL; COMPREHENSION; CONSENSUS DEVELOPMENT; DELPHI STUDY; DEPRESSION; DEPRESSION ASSESSMENT; DISTRESS SYNDROME; FEMALE; FOLLOW UP; GENETIC SCREENING; HUMAN; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; MALE; MEDICAL INFORMATION; MEDICAL PRACTICE; NEUROIMAGING; NORMAL HUMAN; PATIENT MONITORING; POSITRON EMISSION TOMOGRAPHY; PRIORITY JOURNAL; RESEARCH SUBJECT; RISK FACTOR; SECONDARY PREVENTION; VERY ELDERLY;

EID: 84929174672     PISSN: None     EISSN: 17589193     Source Type: Journal    
DOI: 10.1186/s13195-015-0112-7     Document Type: Article

References (27)

1. Sperling RA, Aisen PS, Beckett LA, Bennett DA, Craft S, Fagan AM, et al. Toward defining the preclinical stages of Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011;7:280-92.
2. Jack Jr CR, Knopman DS, Jagust WJ, Shaw LM, Aisen PS, Weiner MW, et al. Hypothetical model of the dynamic biomarkers of the Alzheimer's pathological cascade. Lancet Neurol. 2010;9:119-29.
3. National Plan to Address Alzheimer's Disease: 2013 Update. http://aspe.hhs.gov/daltcp/napa/NatlPlan2013.shtml.
4. Sperling RA, Rentz DM, Johnson KA, Karlawish J, Donohue M, Salmon DP, et al. The A4 study: stopping AD before symptoms begin? Sci Transl Med. 2014;6:228fs213.
5. Burns JM, Klunk WE. Predicting positivity for a new era of Alzheimer disease prevention trials. Neurology. 2012;79:1530-1.
6. Johnson K, Minoshima S, Bohnen N, Donohoe K, Foster N, Herscovitch P, et al. Appropriate use criteria for amyloid PET: a report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer's Association. Alzheimers Dement. 2013;9:E1-16.
7. Chetelat G, La Joie R, Villain N, Perrotin A, de La Sayette V, Eustache F, et al. Amyloid imaging in cognitively normal individuals, at-risk populations and preclinical Alzheimer's disease. Neuroimage Clin. 2013;2:356-65.
8. Shulman MB, Harkins KA, Green RC, Karlawish J. Using AD biomarker research results for clinical care: a survey of ADNI investigators. Neurology. 2013;81:1114-21.
9. Okoli C, Pawlowski SD. The Delphi method as a research tool: an example, design considerations and applications. Inform Manag. 2004;42:15-29.
10. Minas H, Jorm AF. Where there is no evidence: use of expert consensus methods to fill the evidence gap in low-income countries and cultural minorities. Int J Ment Health Syst. 2010;4:33.
11. Delbecq AL, Van de Ven AH, Gustafson DH. Group techniques for program planning: a guide to nominal group and Delphi processes. Glenview, IL: Scott Foresman Company; 1975.
12. Marteau T, Bekker H. The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). Br J Clin Psychol. 1992;31:301-6.
13. Sheikh JI, Yesavage JA. Geriatric depression scale (GDS): recent evidence and development of a shorter version. In: Brink TL, editor. Clinical gerontology: a guide to assessment and intervention. New York, NY: The Haworth Press; 1986. p. 165-73.
14. Horowitz M, Wilner N, Alvaraz W. Impact of event scale: a measure of subjective stress. Psychosom Med. 1979;41:209-18.
15. Karlawish J. Addressing the ethical, policy, and social challenges of preclinical Alzheimer disease. Neurology. 2011;77:1487-93.
16. Sperling R, Karlawish JH, Johnson KA. Preclinical Alzheimer's disease-the challenges ahead. Nat Rev Neurol. 2013;9:54-8.
17. Grill JD, Johnson DK, Burns JM. Should we disclose amyloid imaging results to cognitively normal individuals? Neurodegen Dis Manage. 2013;3:43-51.
18. Roberts JS, Dunn LB, Rabinovici GD. Amyloid imaging, risk disclosure and Alzheimer's disease: ethical and practical issues. Neurodegen Dis Manage. 2013;3:219-29.
19. Lineweaver TT, Bondi MW, Galasko D, Salmon DP. Knowledge of APOE genotype affects subjective and objective memory performance in healthy older adults. Am J Psychiatry. 2014;171:201-8.
20. Lingler JH, Klunk WE. Disclosure of amyloid imaging results to research participants: has the time come? Alzheimers Dement. 2013;9:741-4.
21. Lingler J, Roberts S, Butters M, Lisa P, Schulz R, Hu L, et al. Disclosing amyloid imaging results in MCI: what do patients and families want, and why? [abstract]. Alzheimers Dement. 2013;9:533-P534.
22. Lingler J, Roberts S, Schulz R, Klunk W. Development of a standard approach to disclosing amyloid imaging results in MCI [abstract]. Alzheimers Dement. 2012;8:422.
23. Witte M, Barnes J, Lingler J, Agronin M, Hochstetler H, Healey K, et al. Testing the use of standardized scripts for disclosing 'hypothetical/mock' amyloid PET scan results to nondemented cognitively impaired patients and their care partners [abstract]. Alzheimers Dement. 2013;9:131-P132.
24. Green RC, Roberts JS, Cupples LA, Relkin NR, Whitehouse PJ, Brown T, et al. Disclosure of APOE genotype for risk of Alzheimer's disease. N Engl J Med. 2009;361:245-54.
25. Christensen K, Roberts S, Karlawish J, Obisesan T, Waterston L, Cupples L, et al. The psychological impact of genetic risk information on individuals with mild cognitive impairment at imminent risk for conversion to Alzheimer's disease dementia: findings from the REVEAL study [abstract]. Alzheimers Dement. 2013;9:546.
26. Roberts J, Chen C, Uhlmann W, Green R. Effectiveness of a condensed protocol for disclosing APOE genotype and providing risk education for Alzheimer disease. Genet Med. 2012;14:742-8.
27. Roberts JS, Christensen KD, Green RC. Using Alzheimer's disease as a model for genetic risk disclosure: implications for personal genomics. Clin Genet. 2011;80:407-14.