Amnestic MCI patients’ experiences after disclosure of their amyloid PET result in a research context

Abstract

BackgroundBiomarkers such as amyloid imaging are increasingly used for diagnosis in the early stages of Alzheimer’s disease. Very few studies have examined this from the perspective of the patient. To date, there is only limited evidence about how patients experience and value disclosure in an early disease stage.MethodsSemistructured interviews were carried out with 38 patients with amnestic mild cognitive impairment as part of an investigator-driven diagnostic trial (EudraCT, 2013-004671-12; registered on 20 June 2014) in which participants could opt to know the binary outcome (positive/negative) result of their amyloid positron emission tomography (PET) scan. Verbatim transcripts of the interviews were evaluated using qualitative content analysis and NVivo 11 software.ResultsEight of 38 patients received a positive amyloid PET scan result, and the remaining 30 patients received a negative amyloid PET scan result. After disclosure of the result to the patients, we interviewed each patient twice: 2 weeks after disclosure and 6 months after disclosure. Patients had difficulties in repeating the exact words used during disclosure of their amyloid PET scan result by the neurologist; yet, they could recall the core message of the result in their own words. Some patients were confused by the terminology of an amyloid-positive/negative test result. At 6 months, two of eight patients with a positive amyloid PET scan result experienced emotional difficulties (sadness, feeling worried). Three of 30 patients with a negative amyloid PET scan result started to doubt whether they had received the correct result. Patients reported that they experienced advantages after the disclosure, such as information about their health status, the possibility of making practical arrangements, medication, enjoying life more, and a positive impact on relationships. They also reported disadvantages following disclosure, such as having emotional difficulties, feeling worried about when their symptoms might worsen, the risk of a more patronizing attitude by relatives, and the possibility of a wrong diagnosis.ConclusionsThis exploratory study shows that the majority of patients can accurately recall the information received during disclosure. The experienced advantages and disadvantages reported by our patients depended on the outcome of the result (positive or negative) and the interval of the conducted interview (2 weeks or 6 months after amyloid PET disclosure). Discrepancies were found between patients’ expectations according to the interview prior to amyloid PET disclosure (Vanderschaeghe et al. [Neuroethics. 2017;10:281–97]) and their actual experiences after their amyloid PET disclosure.

Cognitively unimpaired adults’ reactions to disclosure of amyloid PET scan results

“…[21][22][23][24] Further, they are consistent with studies concluding that it is safe to disclose amyloid imaging results to adults with MCI and dementia. [25,26] Post-disclosure, participants who received an "elevated" result reported contemplating and making changes to health behaviors and future plans to a greater extent than participants who received a "not-elevated" results. Participants with elevated brain amyloid did not uniformly ascribe these changes to their amyloid PET scan result.…”

From information to follow‐up: Ethical recommendations to facilitate the disclosure of amyloid PET scan results in a research setting

“…In Table 1 , we represent benefits and risks as reported by previously conducted studies regarding disclosure of results [14] , [15] , [16] , [22] , [23] , [24] , [25] , [26] , [27] . Table 1 can provide researchers with an overview of possible benefits and risks, which can be explained to the participant.…”

“… NOTE. Table 1 is based on the advantages and disadvantages as reported in the following studies [12] , [14] , [15] , [16] , [22] , [23] , [24] , [25] , [26] , [27] . Abbreviation: AD, Alzheimer's disease.…”

“…Benefits and risks can be interpreted differently by participants compared to the views of researchers [15] . For example, emotional and psychological consequences may be perceived as a compelling reason against disclosure of results.…”

“…Three of four recommendations [10] , [11] , [13] focused on the disclosure of amyloid PET results, whereas one recommendation [12] pertains to biomarker-based information more generally. Relatively few empirical studies have explored the viewpoints of patients, carers, and stakeholders regarding amyloid PET disclosure [14] , [15] , [16] , [17] .…”