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

Heleen M.A. Hendriksen; Tanja J. de Rijke; Agnetha Fruijtier; Elsmarieke van de Giessen; Argonde C. van Harten; Mardou S.S.A. van Leeuwenstijn-Koopman; Jetske van der Schaar; Calvin Trieu; Denise Visser; Ellen M.A. Smets; Leonie N.C. Visser; Wiesje M. van der Flier

doi:10.1002/alz.14148

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

Heleen M.A. Hendriksen^*, Tanja J. de Rijke, Agnetha Fruijtier, Elsmarieke van de Giessen, Argonde C. van Harten, Mardou S.S.A. van Leeuwenstijn-Koopman, Jetske van der Schaar, Calvin Trieu, Denise Visser, Ellen M.A. Smets, Leonie N.C. Visser, Wiesje M. van der Flier

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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 P_interaction> 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.

Original language	English
Pages (from-to)	6556-6565
Number of pages	10
Journal	Alzheimer's & Dementia
Volume	20
Issue number	9
DOIs	https://doi.org/10.1002/alz.14148
Publication status	Published - Sept 2024
Externally published	Yes

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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Hendriksen, H. M. A., de Rijke, T. J., Fruijtier, A., van de Giessen, E., van Harten, A. C., van Leeuwenstijn-Koopman, M. S. S. A., van der Schaar, J., Trieu, C., Visser, D., Smets, E. M. A., Visser, L. N. C., & van der Flier, W. M. (2024). Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time. Alzheimer's & Dementia , 20(9), 6556-6565. https://doi.org/10.1002/alz.14148

@article{98d16f528a874da0a0529599798c538e,

title = "Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time",

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",

author = "Hendriksen, {Heleen M.A.} and {de Rijke}, {Tanja J.} and Agnetha Fruijtier and {van de Giessen}, Elsmarieke and {van Harten}, {Argonde C.} and {van Leeuwenstijn-Koopman}, {Mardou S.S.A.} and {van der Schaar}, Jetske and Calvin Trieu and Denise Visser and Smets, {Ellen M.A.} and Visser, {Leonie N.C.} and {van der Flier}, {Wiesje M.}",

note = "Publisher Copyright: {\textcopyright} 2024 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.",

year = "2024",

month = sep,

doi = "10.1002/alz.14148",

language = "English",

volume = "20",

pages = "6556--6565",

journal = "Alzheimer's & Dementia ",

issn = "1552-5260",

publisher = "John Wiley & Sons Inc.",

number = "9",

}

Hendriksen, HMA, de Rijke, TJ, Fruijtier, A, van de Giessen, E, van Harten, AC, van Leeuwenstijn-Koopman, MSSA, van der Schaar, J, Trieu, C, Visser, D, Smets, EMA, Visser, LNC & van der Flier, WM 2024, 'Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time', Alzheimer's & Dementia , vol. 20, no. 9, pp. 6556-6565. https://doi.org/10.1002/alz.14148

TY - JOUR

T1 - Amyloid PET disclosure in subjective cognitive decline

T2 - Patient experiences over time

AU - Hendriksen, Heleen M.A.

AU - de Rijke, Tanja J.

AU - Fruijtier, Agnetha

AU - van de Giessen, Elsmarieke

AU - van Harten, Argonde C.

AU - van Leeuwenstijn-Koopman, Mardou S.S.A.

AU - van der Schaar, Jetske

AU - Trieu, Calvin

AU - Visser, Denise

AU - Smets, Ellen M.A.

AU - Visser, Leonie N.C.

AU - van der Flier, Wiesje M.

PY - 2024/9

Y1 - 2024/9

N2 - 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.

AB - 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.

KW - Alzheimer's disease

KW - amyloid

KW - disclosure

KW - patient-reported experiences

KW - patient-reported outcomes

KW - positron emission tomography (PET) scan

KW - preclinical

KW - risk communication

KW - subjective cognitive decline

UR - http://www.scopus.com/inward/record.url?scp=85200143404&partnerID=8YFLogxK

U2 - 10.1002/alz.14148

DO - 10.1002/alz.14148

M3 - Article

C2 - 39087383

SN - 1552-5260

VL - 20

SP - 6556

EP - 6565

JO - Alzheimer's & Dementia

JF - Alzheimer's & Dementia

IS - 9

ER -

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

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Keywords

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