Amyloid positron emission tomography candidates may focus more on benefits than risks of results disclosure

Jennifer H Lingler, J Scott Roberts, Hyejin Kim, Jonna L Morris, Lu Hu, Meghan Mattos, Eric McDade, Oscar L Lopez, Jennifer H Lingler, J Scott Roberts, Hyejin Kim, Jonna L Morris, Lu Hu, Meghan Mattos, Eric McDade, Oscar L Lopez

Abstract

Introduction: Given mounting calls to disclose biomarker test results to research participants, we explored factors underlying decisions by patients with mild cognitive impairment to receive amyloid imaging results.

Methods: Prospective, qualitative interviews were conducted with 59 participants (30 = mild cognitive impairment patients, 29 = care partners) from the scan arm of a randomized controlled trial on the effects of amyloid PET results disclosure in an Alzheimer Disease Research Center setting.

Results: Sixty-three percent of the participants were female, with an average age of 72.9 years, and most had greater than a high school level of education (80%). Primary motivations included: (1) better understanding one's mild cognitive impairment etiology and prognosis to plan ahead, and (2) learning one's brain amyloid status for knowledge's sake, regardless of whether the information is actionable. Most participants demonstrated an adequate understanding of the scan's limitations, yet instances of characterizing amyloid PET as a definitive test for Alzheimer's disease occurred. Mention of potential drawbacks, such as negative psychological outcomes, was minimal, even among care partners.

Discussion: Findings demonstrate a risk of disproportionate focus on possible benefits of testing among amyloid scan candidates and suggest a need to clearly emphasize the limitations of amyloid PET when counseling cognitively impaired patients and their families before testing. Future research should examine whether minimizing drawbacks at the pre-imaging stage has adverse consequences on results disclosure.

Keywords: Alzheimer's disease; Amyloid PET; Decision-making; Ethics; Mild cognitive impairment.

References

    1. Alzheimer's Association Early detection and diagnosis of Alzheimer's disease (Policy brief). In: Alzheimer's Association Public Health [online] Available at:
    1. Grill J.D., Apostolova L.G., Bullain S., Burns J.M., Cox C.G., Dick M. Communicating mild cognitive impairment diagnoses with and without amyloid imaging. Alzheimers Res Ther. 2017;9:35.
    1. Witte M.M., Foster N.L., Fleisher A.S., Williams M.M., Quaid K., Wasserman M. Clinical use of amyloid-positron emission tomography neuroimaging: practical and bioethical considerations. Alzheimers Dement. 2015;1:358–367.
    1. Witte M., Barnes J., Lingler J., Agronin M., Hochstetler H., Healey K. Testing the use of standardized scripts for disclosing ‘hypothetical/mock’ amyloid PET scan results to nondemented cognitively impaired patients and their care partners. Alzheimers Dement. 2013;9:131–132.
    1. Roberts J.S., Dunn L.B., Rabinovici G.D. Amyloid imaging, risk disclosure and Alzheimer's disease: ethical and practical issues. Neurodegener Dis Manag. 2013;3:219–229.
    1. Lingler J.H., Klunk W.E. Disclosure of amyloid imaging results to research participants: has the time come? Alzheimers Dement. 2013;9:741–744.
    1. Lingler J.H., Butters M.A., Gentry A.L., Hu L., Hunsaker A.E., Klunk W.E. Development of a standardized approach to disclosing amyloid imaging research results in mild cognitive impairment. J Alzheimers Dis. 2016;52:17–24.
    1. Harkins K., Sankar P., Sperling R., Grill J.D., Green R.C., Johnson K.A. Development of a process to disclose amyloid imaging results to cognitively normal older adults research participants. Alzheimers Res Ther. 2015;7:26.
    1. Vanderschaeghe G., Schaeverbeke J., Vandenberghe R., Dierickx K. Amnestic MCI patients' perspectives toward disclosure of amyloid PET results in a research context. Neuroethics. 2017;10:281–297.
    1. Lopez O.L., Jagust W.J., DeKosky S.T., Becker J.T., Fitzpatrick A., Dulberg C. Prevalence and classification of mild cognitive impairment in the Cardiovascular Health Study Cognition Study: part 1. Arch Neurol. 2003;60:1385–1389.
    1. Jeste D.V., Palmer B.W., Appelbaum P.S., Golshan S., Glorioso D., Dunn L.B. A new brief instrument for assessing decisional capacity for clinical research. Arch Gen Psychiatry. 2007;64:966–974.
    1. Seaman J.B., Terhorst L., Gentry A., Hunsaker A., Parker L.S., Lingler J.H. Psychometric properties of a decisional capacity screening tool for individuals contemplating participation in Alzheimer's disease reseah. J Alzheimers Dis. 2015;46:1–9.
    1. Hamilton M. A rating scale for depression. J Neurol Neurosurg Psychiatry. 1960;23:56.
    1. Spielberger C.D. Anxiety: state-trait process. In: Spielberger C.D., Sarason I.G., editors. Vol. 1. Wiley; New York: 1975. pp. 115–143. (Stress and Anxiety).
    1. Glaser B.G. The constant comparative method of qualitative analysis. Ground Theory Rev Int J. 2008;7
    1. Wennberg J.E. Unwarranted variations in healthcare delivery: implications for academic medical centres. BMJ. 2002;325:961–964.
    1. Rosenbaum L. Invisible risks, emotional choices—Mammography and medical decision making. N Engl J Med. 2014;371:1549–1552.
    1. Stout N.K., Lee S.J., Schechter C.B., Kerlikowske K., Alagoz O., Berry D. Benefits, harms, and costs for breast cancer screening after US implementation of digital mammography. J Natl Cancer Inst. 2014;106
    1. Pataky R., Gulati R., Etzioni R. Is prostate cancer screening cost-effective? A microsimulation model of prostate-specific antigen-based screening for British Columbia, Canada. Int J Cancer. 2014;135:939–947.
    1. Arias J.J., Karlawish J. Confidentiality in preclinical Alzheimer disease studies: when research and medical records meet. Neurology. 2014;82:725–729.
    1. Kim S.Y.H., Karlawish J., Berkman B.E. Ethics of genetic and biomarker test disclosures in neurodegenerative disease prevention trials. Neurology. 2015;84:1488–1494.
    1. Grill J.D., Cox C.G., Kremen S., Mendez M.F., Teng E., Shapira J. Patient and caregiver reactions to clinical amyloid imaging. Alzheimers Dement. 2017;13:924–932.
    1. Lim Y.Y., Maruff P., Getter C., Snyder P.J. Disclosure of positron emission tomography amyloid imaging results: a preliminary study of safety and tolerability. Alzheimers Dement. 2016;12:454–458.
    1. Mozersky J., Sankar P., Harkins K., Hachey S., Karlawish J. Comprehension of an elevated amyloid positron emission tomography biomarker result by cognitively normal older adults. JAMA Neurol Epub. 2017;75:44–50.
    1. Gooblar J., Roe C.M., Selsor N.J., Gabel M.J., Morris J.C. Attitudes of research participants and the general public regarding disclosure of Alzheimer disease research results. JAMA Neurol. 2015;72:1484–1490.
    1. Ott B.R., Pelosi M.A., Tremont G., Snyder P.J. A survey of knowledge and views concerning genetic and amyloid positron emission tomography status disclosure. Alzheimers Dement. 2016;2:23–29.
    1. Mustafa R., Brosch J.R., Rabinovici G.D., Dickerson B.C., Carrillo M.C., Glazier B.S. Patient and caregiver assessment of the benefits from the clinical use of amyloid PET imaging. Alzheimer Dis Assoc Disord. 2018;32:35–42.
    1. Gomersall T., Astell A., Nygård L., Sixsmith A., Mihailidis A., Hwang A. Living with ambiguity: a metasynthesis of qualitative research on mild cognitive impairment. Gerontologist. 2015;55:892–912.
    1. Lingler J.H., Hu L. Qualitative evidence in working with cognitively impaired persons. In: Olson K., Young R.A., Schultz I.Z., editors. Handbook of Qualitative Research. Spring; New York: 2016. pp. 277–289.
    1. Lingler J.H., Terhorst L., Schulz R., Gentry A., Lopez O. Dyadic analysis of illness perceptions among persons with mild cognitive impairment and their family members. Gerontologist. 2016;56:886–895.
    1. Jack C.R., Jr., Bennett D.A., Blennow K., Carrillo M.C., Dunn B., Haeberlein S.B. NIA-AA Research Framework: toward a biological definition of Alzheimer's disease. Alzheimers Dement. 2018;14:535–562.
    1. Albert M.S., DeKosky S.T., Dickson D., Dubois B., Feldman H.H., Fox N.C. he diagnosis of mild cognitive impairment due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011;7:270–279.

Source: PubMed

スポンサーと協力者

医学的状態

薬物療法

3
購読する