AMNESTIC MCI PATIENTS’ EXPERIENCES AFTER DISCLOSURE OF THE AMYLOID PET RESULT IN A RESEARCH CONTEXT

Abstract

Researchers currently do not have the obligation to return individual research (IRR) results to the participant. This non-disclosure policy can be questioned based upon several arguments; right to know medical information, opportunity to make arrangements, etc. Here, we investigate the patients’ reported experiences post disclosure of their amyloid PET-scan. The current report concerns a substudy of an investigator-driven trial of the predictive value of amyloid PET in amnestic MCI. In this substudy, aMCI patients could opt to be informed about their amyloid PET result, positive (increased amyloid load) or negative (normal amyloid load). The study physician communicated the amyloid PET result in a semi-standardized way during the disclosure visit. Patients were interviewed prior to amyloid PET disclosure (Vanderschaeghe G. et al., Neuroethics, 2017) as well as two weeks and six months post IRR disclosure. Verbatim transcripts were analyzed via content analysis. 38 aMCI patients (100% of study participants) opted to know their IRR (eight with a positive and, 30 with a negative amyloid PET). Most aMCI patients could accurately recall their received result, yet often had difficulties to correctly use the terminology of a positive/negative amyloid PET-scan. After six months, 2/8 patients with a positive amyloid PET described experiencing emotional difficulties (sadness, feeling worried). Three patients with a negative amyloid PET started to doubt whether they received the correct result. Patients reported on experienced advantages (e.g. health clarification, practical arrangements, medication, to enjoy life more, positive impact on relationship) as well as disadvantages (e.g. emotional difficulties, worries about when symptoms will deteriorate, risk of more patronizing attitude by relatives, driver's license, possibility of a wrong diagnosis) after IRR disclosure. Patients may accurately recall their IRR. Their perception differs depending on their personal coping strategy and their experienced memory complaints. The experienced (dis)advantages reported by our patients depends on the outcome of the result (positive or negative) and the time interval of the conducted interview (two weeks or six months post IRR disclosure). Discrepancies were found between patients’ expectations based on the interview prior to IRR disclosure (Vanderschaeghe G. et al., Neuroethics, 2017) and their concrete experiences after their IRR disclosure.