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.

Highlights

  • Biomarkers such as amyloid imaging are increasingly used for diagnosis in the early stages of Alzheimer’s disease

  • The experienced advantages and disadvantages reported by our patients depended on the outcome of the result and the interval of the conducted interview (2 weeks or 6 months after amyloid positron emission tomography (PET) disclosure)

  • For the three patients who dropped out of the study, the following three reasons were mentioned: a lack of motivation, disagreement of the partner, and an inability to schedule a new appointment that best suited the patient. This resulted in a study population that consisted of 38 patients with amnestic mild cognitive impairment (aMCI) who met the inclusion criteria (Appendix 1) of the BioAdaptAD study [14, 31]

Read more

Summary

Introduction

Biomarkers such as amyloid imaging are increasingly used for diagnosis in the early stages of Alzheimer’s disease. Predementia stage of Alzheimer’s disease (AD), clinical, neuropsychological, and magnetic resonance imaging characteristics may not suffice for a reliable AD diagnosis. Several questions remain before amyloid positron emission tomography (PET) can be recommended for application in routine clinical practice in amnestic mild cognitive impairment (aMCI) [4, 5]. These questions relate, among others, to the prediction of the individual timeline of cognitive decline and the psychological consequences of amyloid PET disclosure [6,7,8,9]. There is limited knowledge on how to best disclose amyloid PET scan results to the tested individual [7, 10,11,12]

Objectives
Methods
Results
Discussion
Conclusion

Talk to us

Join us for a 30 min session where you can share your feedback and ask us any queries you have

Schedule a call

Disclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.