Affiliations: [a]
University of Pittsburgh School of Nursing, Department of Health and Community Systems, Pittsburgh, PA, USA
| [b]
University of Pittsburgh School of Medicine, Department of Psychiatry, Pittsburgh, PA, USA
| [c]
University of Pittsburgh School of Social Work, Pittsburgh, PA, USA
| [d]
University of Pittsburgh School of Public Health, Department of Human Genetics, Pittsburgh, PA, USA
| [e]
University of Michigan School of Public Health, Department of Health Behavior & Health Education, Ann Arbor, MI, USA
| [f]
University Center for Social and Urban Research, Pittsburgh, PA, USA
Correspondence:
[*]
Correspondence to: Jennifer H. Lingler, PhD, CRNP, 3500 Victoria St., Suite 415, Pittsburgh, PA 15261, USA. Tel.: +1 412 383 5214; Fax: +1 412 383 7293; E-mail: [email protected].
Abstract: The increased use of PET amyloid imaging in clinical research has sparked numerous concerns about whether and how to return such research test results to study participants. Chief among these is the question of how best to disclose amyloid imaging research results to individuals who have cognitive symptoms that could impede comprehension of the information conveyed. We systematically developed and evaluated informational materials for use in pre-test counseling and post-test disclosures of amyloid imaging research results in mild cognitive impairment (MCI). Using simulated sessions, persons with MCI and their family care partners (N = 10 dyads) received fictitious but realistic information regarding brain amyloid status, followed by an explanation of how results impact Alzheimer’s disease risk. Satisfaction surveys, comprehension assessments, and focus group data were analyzed to evaluate the materials developed. The majority of persons with MCI and their care partners comprehended and were highly satisfied with the information presented. Focus group data reinforced findings of high satisfaction and included 6 recommendations for practice: 1) offer pre-test counseling, 2) use clear graphics, 3) review participants’ own brain images during disclosures, 4) offer take-home materials, 5) call participants post-disclosure to address emerging questions, and 6) communicate seamlessly with primary care providers. Further analysis of focus group data revealed that participants understood the limitations of amyloid imaging, but nevertheless viewed the prospect of learning one’s amyloid status as valuable and empowering.
