Scholarlink

Background <p>Amyloid 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.</p> Methods <p>We 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.</p> Results <p>Twenty-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%; <i>p</i> = 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.</p> Conclusion <p>Amyloid 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.</p>

错误：搜索内容不能为空，请输入英文关键词
错误：关键词超出字数限制，请精简
高级检索

Patient and representative experience after amyloid PET/CT in a real-world memory clinic: a mixed-methods observational study

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年7月20日

查看全文
  • Giulia Richina,
  • Nathalie Testart Dardel,
  • Paolo Salvioni,
  • Gilles Allali,
  • John O. Prior,
  • Mario Jreige

摘要

Background

Amyloid 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.

Methods

We 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.

Results

Twenty-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.

Conclusion

Amyloid 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.