1. What patients in memory clinics want to know, and how we (ideally) inform them
- Author
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Fruijtier, Agnetha Diantha and Fruijtier, Agnetha Diantha
- Abstract
This thesis focuses on optimizing information provision in memory clinics, especially during consultations where amyloid test results are shared with individuals diagnosed with Mild Cognitive Impairment (MCI). In the first part of the thesis, the informational needs of patients and care partners visiting memory clinics were assessed. A three-round Delphi consensus study involving 80 memory clinic professionals, 66 patients, and 76 care partners identified 25 key topics to discuss during the diagnostic process, including diagnostic testing, test results, diagnosis, and practical implications. The study revealed that patients and care partners placed higher importance on understanding dementia risk and distinguishing between Alzheimer’s disease and dementia compared to health care professionals. These topics were used to create educational resources, including animation videos and a question prompt list, to better prepare patients and care partners for consultations. Subsequent research analyzed the extent to which these topics were actually discussed in clinical practice. An observational study of 174 audio-recorded consultations from eight memory clinics found that only about half of the identified topics were covered, with discussions about diagnosis and prognosis being the least frequent. These discussions were rarely initiated by patients or care partners. The study suggests that providing patients and care partners with a topic list before consultations could encourage more active participation and ensure that crucial topics are addressed. The thesis also explored the motivations of patients and their care partners for visiting memory clinics. Surveys and consultations revealed that while most patients sought to determine the cause of their symptoms or confirm/exclude dementia, about 20% had other motivations, such as seeking additional information or access to care. However, these motivations were often not expressed during consultations, highlighting the need
- Published
- 2024
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