What patients in memory clinics want to know, and how we (ideally) inform them

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 for clinicians to actively engage with patients and care partners about their reasons for visiting. Further, a randomized controlled trial evaluated the impact of a three-minute educational animation video on patients undergoing a lumbar puncture (LP). The video improved patients’ knowledge about the procedure and reduced uncertainty, particularly when viewed in a clinical setting. However, it did not significantly affect anxiety levels or post-LP complications. In the second part of the thesis, the thesis examined the effectiveness of different communication strategies for disclosing a positive amyloid-status to MCI patients. A study using video vignettes with 1,017 participants found that risk communication best-practices, emotional support, and the teach-back technique were the most effective in enhancing information recall and positive evaluations of care. The study also highlighted the importance of considering individual characteristics, such as gender and coping style, when communicating complex health information. Based on the research presented in this thesis, we can conclude that patients and care partners have considerable information needs, that are not always addressed and/or catered for. To optimize information provision in memory clinics, particularly during consultations in which results of amyloid testing are shared with individuals with MCI, a personalized and multi-faceted approach is required. Information should preferably be tailored to the individual and provided through various modalities, e.g. verbally, in written and audiovisual format, and at several moments during the diagnostic trajectory. We found that risk communication best-practices and the teach-back strategy as well as attending to emotions are the most effective communication strategies for clinicians to use when disclosing amyloid positive results. Based on our results, we developed tools to support patients and care partners in their preparation for a memory clinic visit, and in their communication with health care professionals.