ABIDE Delphi study: Topics to discuss in diagnostic consultations in memory clinics

Background: Information given to patients and caregivers during the clinician-patient encounter varies considerably between memory clinic professionals. Patients and caregivers express a clear desire for more information. It is unclear what information patients and caregivers value most during the diagnostic process and whether this is concordant with professionals' opinion. We aimed to identify a topic list on which health care professionals, patients, and caregivers agree that these should be discussed during diagnostic consultations in memory clinics. Further, we aimed to establish the optimal moment for each topic to be discussed during the diagnostic process. Methods: We performed a three-round Delphi consensus study. Professionals (N = 80), patients (N = 66), and caregivers (N = 76) rated the importance of 44 informative topics through an online questionnaire. Consensus was defined as a topic rating of 6 or 7 on a 7-point Likert scale by ≥ 75% of each panel. In round 2 and 3, a survey was added to identify the optimal moment during the diagnostic process to discuss each topic. Results: By round 3, consensus was achieved on 17 topics divided into four categories, information about (1) diagnostic testing, (2) test results, (3) diagnosis, and (4) practical implications. Eight additional topics showed significant differences between panels. Most notable panel differences regard the risk for developing dementia and the distinction between Alzheimer's disease and dementia, which patients and caregivers evaluated as more important compared to professionals. The optimal moment to discuss topics during the diagnostic process was identified for the 17 core topics, and the eight topics with significant differences. Conclusions: We present a core list of informative topics, which professionals, patients, and caregivers agree they should be discussed during the diagnostic process in a memory clinic. The topic list can support professionals and empower patients and caregivers during diagnostic physician-patient consultations

Lumbar puncture patient video increases knowledge and reduces uncertainty: An RCT

Background: Patients often perceive a lumbar puncture (LP) as an invasive procedure. We aimed to evaluate the impact of a 3-minute educational animation-video explaining the LP procedure, on patients’ knowledge, uncertainty, anxiety, and post-LP complications. Methods: We included 203 newly referred memory clinic patients, who were randomly assigned to one of three conditions: (1) home viewing of the video, (2) clinic viewing of the video, or (3) control condition (care as usual). Participants completed questionnaires measuring knowledge as information recall, uncertainty, anxiety, and post-LP complications, the latter when patients underwent an LP procedure (n = 145). Results: Viewing the video increased information recall for both home (P <.001), and clinic viewers (P <.001) compared to controls. Levels of uncertainty decreased after viewing (Pfor interaction=.044), particularly for clinic viewers. Viewing the video or not did not affect anxiety and post-LP complications. Discussion: Preparing individuals for an LP by means of an educational video can help to increase knowledge about the procedure and reduce feelings of uncertainty

What patients want to know, and what we actually tell them: The ABIDE project

Background:We studied to what degree and at whose initiative 25 informational topics, formerly identified as important, are discussed in diagnostic consultations. Methods: Audio recordings of clinician–patient consultations of 71 patients and 32 clinicians, collected in eight Dutch memory clinics, were independently contentcoded by two coders. The coding scheme encompassed 25 informational topics. Results: Approximately half (Mdn = 12) of the 25 topics were discussed per patient during the diagnostic process, with a higher frequency among individuals receiving a dementia diagnosis (Mdn = 14) compared to others (Mdn = 11). Individual topics ranged from being discussed with 2/71 (3%) to 70/71 (99%) of patients. Patients and/or care partners rarely initiated topic discussion (10%). When they did, they often enquired about one of the least frequently addressed topics. Conclusion: Most patients received information on approximately half of the important informational topics. Providing the topic list to patients and care partners beforehand could allow consultation preparation and stimulate participation

Motivations of patients and their care partners for visiting a memory clinic. A qualitative study

Objective: We investigated motivations of patients and care partners for their memory clinic visit, and whether these are expressed in consultations. Methods: We included data from 115 patients (age 71 ± 11, 49% Female) and their care partners (N = 93), who completed questionnaires after their first consultation with a clinician. Audio-recordings of these consultations were available from 105 patients. Motivations for visiting the clinic were content-coded as reported by patients in the questionnaire, and expressed by patients and care partners in consultations. Results: Most patients reported seeking a cause for symptoms (61%) or to confirm/exclude a (dementia) diagnosis (16%), yet 19% reported another motivation: (more) information, care access, or treatment/advice. In the first consultation, about half of patients (52%) and care partners (62%) did not express their motivation(s). When both expressed a motivation, these differed in about half of dyads. A quarter of patients (23%) expressed a different/complementary motivation in the consultation, then reported in the questionnaire. Conclusion: Motivations for visiting a memory clinic can be specific and multifaceted, yet are often not addressed during consultations. Practice implications: We should encourage clinicians, patients, and care partners to talk about motivations for visiting the memory clinic, as a starting point to personalize (diagnostic) care