ArticleEJNMMI reports2026
Patient and representative experience after amyloid PET/CT in a real-world memory clinic: a mixed-methods observational study.
Article in EJNMMI reports, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundAmyloid PET/CT is increasingly used in the diagnostic evaluation of cognitive disorders; however, its real-world impact on patient and caregiver experiences remains insufficiently characterised. This study examined how amyloid PET results influence perceived diagnosis, emotional responses, behavioural adaptations, and daily life organisation.
methodsWe conducted a retrospective-prospective monocentric mixed-methods study integrating clinical data from the CLEMENS registry, routine amyloid PET interpretations, and a structured telephone survey that included open-ended questions. Adults who underwent amyloid PET between 2015 and 2024 were contacted, and therapeutic representatives were interviewed when patients were unable to participate. Quantitative outcomes were compared between PET-positive and PET-negative individuals using Fisher's exact and nonparametric tests. Qualitative responses were analysed thematically and integrated with quantitative findings.
resultsTwenty-one individuals completed the survey (12 PET-positive and 9 PET-negative individuals). PET-positive individuals were slightly older (72.4 vs. 68.9 years) and had lower MoCA scores (19.4 vs. 22.2) than PET-negative individuals. They exhibited major neurocognitive disorders (5/12 vs. 1/9) and behavioural adaptations (73% vs. 33%) more frequently. Emotional responses differed markedly by PET status: depressive mood (64% vs. 12.5%; p = 0.059) and shock/distress (42% vs. 22%) were more frequent among PET-positive individuals, whereas relief was more common among PET-negative individuals (50% vs. 18%). Qualitative themes indicated that PET-positive results were perceived as turning points associated with loss of autonomy and future uncertainty, while PET-negative results commonly provided reassurance and stability.
conclusionAmyloid PET/CT influences not only diagnostic understanding but also the emotional, behavioural, and practical experiences of patients and representatives. PET-positive results are associated with a greater psychosocial burden, whereas PET-negative results provide reassurance. As amyloid PET becomes central to diagnostic and therapeutic pathways, patient-centred communication and supportive counselling will be essential.
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