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. 2024 Sep;20(9):6556-6565.
doi: 10.1002/alz.14148. Epub 2024 Aug 1.

Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time

Heleen M A Hendriksen  1   2 , Tanja J de Rijke  3   4 , Agnetha Fruijtier  1   2   3   4 , Elsmarieke van de Giessen  5   6 , Argonde C van Harten  1   2 , Mardou S S A van Leeuwenstijn-Koopman  1   2 , Jetske van der Schaar  1   2 , Calvin Trieu  1   2 , Denise Visser  5   6 , Ellen M A Smets  3   4 , Leonie N C Visser  1   2   3   4   7 , Wiesje M van der Flier  1   2   8
Affiliations

Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time

Heleen M A Hendriksen et al. Alzheimers Dement. 2024 Sep.

Abstract

Introduction: We disclosed amyloid positron emission tomography (PET) results in individuals with subjective cognitive decline (SCD) and studied patient experiences and outcomes over a 6-month period.

Methods: Fifty-seven participants from the Subjective Cognitive Impairment Cohort (SCIENCe) (66 ± 8 years, 21 [37%] F, Mini-Mental State Examination 29 ± 1, 15 [26%] amyloid positive [A+]) completed questionnaires 1 week prior (T0), 1 day after (T1), and 6 months after amyloid PET disclosure (T2). Questionnaires addressed patient-reported experiences and outcomes.

Results: Independent of amyloid status, participants were satisfied with the consultation (scale 1-10; 7.9 ± 1.7) and information provided (scale 1-4; T1: 3.3 ± 0.9, T2: 3.2 ± 0.8). After 6 months, A+ participants reported more information needs (45% vs. 12%, p = 0.02). Independent of amyloid status, decision regret (scale 1-5; A+: 1.5 ± 0.9, A-: 1.4 ± 0.6, p = 0.53) and negative emotions (negative affect, uncertainty, anxiety) were low (all p > 0.15 and Pinteraction > 0.60).

Discussion: Participants with SCD valued amyloid PET disclosure positively, regardless of amyloid status. The need for information after 6 months, which was stronger in A+ individuals, underscores the importance of follow-up.

Highlights: Participants with subjective cognitive decline (SCD) positively valued amyloid positron emission tomography (PET) disclosure. Participants with SCD experienced low levels of decision regret. We did not observe an increase in negative emotions. After 6 months, amyloid-positive individuals wanted more information.

Keywords: Alzheimer's disease; amyloid; disclosure; patient‐reported experiences; patient‐reported outcomes; positron emission tomography (PET)  scan; preclinical; risk communication; subjective cognitive decline.

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Conflict of interest statement

H.H., T.R., A.F., E.G., M.L., J.S., C.T., D.V., and E.S. report no financial disclosures or conflicts of interest. A.H. is advisor to the Brain Research Center. Research programs of A.H. have been funded by ZonMW and Alzheimer Nederland. All funding is paid to her institution. L.N.C.V. has been an invited speaker at Schwabe Group, fees were paid to her institution. Research programs of W.F. have been funded by ZonMW, NWO, EU‐JPND, EU‐IHI, Alzheimer Nederland, Hersenstichting CardioVascular Onderzoek Nederland, Health∼Holland, Topsector Life Sciences & Health, stichting Dioraphte, Gieskes‐Strijbis fonds, stichting Equilibrio, Edwin Bouw fonds, Pasman stichting, stichting Alzheimer & Neuropsychiatrie Foundation, Philips, Biogen MA Inc., Novartis‐NL, Life‐MI, AVID, Roche BV, Fujifilm, Eisai, Combinostics. W.F. holds the Pasman chair. W.F. is recipient of ABOARD, which is a public–private partnership receiving funding from ZonMW (#73305095007) and Health∼Holland, Topsector Life Sciences & Health (PPP‐allowance; #LSHM20106). W.F. is recipient of TAP‐dementia (www.tap‐dementia.nl), receiving funding from ZonMw (#10510032120003). TAP‐dementia receives co‐financing from Avid Radiopharmaceuticals and Amprion. All funding is paid to her institution. W.F. has been an invited speaker at Biogen MA Inc., Danone, Eisai, WebMD Neurology (Medscape), NovoNordisk, Springer Healthcare, and European Brain Council. All funding is paid to her institution. W.F. is consultant to Oxford Health Policy Forum CIC, Roche, Biogen MA Inc., and Eisai. All funding is paid to her institution. W.F. participated on advisory boards of Biogen MA Inc., Roche, and Eli Lilly. W.F. is a member of the steering committee of EVOKE/EVOKE+ (NovoNordisk). All funding is paid to her institution. W.F. is a member of the steering committee of PAVE, and Think Brain Health. W.F. was associate editor of Alzheimer, Research & Therapy in 2020/2021. W.F. is associate editor at Brain. Author disclosures are available in the supporting information.

Figures

FIGURE 1
FIGURE 1
Study procedures and questionnaires. DRS, Decision Regret Scale; EORTC info25, European Organisation for Research and Treatment of Cancer information questionnaire; MUIS, Mishel Uncertainty in Illness Scale; PANAS, Positive and Negative Affect Scale; PET, positron emission tomography; PSQ, Patient Satisfaction Questionnaire; STAI, State‐Trait Anxiety Inventory; TiOS, Trust in Oncologist Scale; SCIENCe, Subjective Cognitive Impairment Cohort study.
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