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.

Identifying best practices for disclosure of amyloid imaging results: A randomized controlled trial.

INTRODUCTION: Empirical studies on effective communication for amyloid disclosure in mild cognitive impairment (MCI) are lacking. We aimed to study the impact of six communication strategies. METHOD: We performed a randomized controlled trial with seven randomly assigned, video-vignette conditions: six emphasizing a communication strategy and one basic condition. All showed a scripted consultation of a neurologist disclosing positive amyloid positron emission tomography (PET) scan results to an MCI patient. Healthy individuals (N = 1017; mean age ± SD 64 ± 8, 808 (79%) female) were instructed to imagine themselves in the video, answered questionnaires assessing information recall, emotional state, and behavioral intentions, and evaluate the physician/information. RESULTS: "Risk best practice" resulted in highest free recall compared to other strategies (P < .05), except "emotional support". Recall in "emotional support" was better compared to "basic-' and elaborate information"(P < .05). "Risk best practice" resulted in the highest uncertainty (P < .001). "Teach-back" and "emotional support" contributed to the highest evaluations (P -values < .01). CONCLUSION: Risk communication best practices, attending to emotions, and teach-back techniques enhance information recall of amyloid-PET results, and could contribute to positive care evaluations.

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review.

Increasing attention has been paid to the 'voice' of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider's perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging.

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 content-coded 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.

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.

Cerebrospinal fluid collection: An informative animation video for patients and caregivers.

Daily clinical practice has shown that patients are often hesitant to undergo a lumbar puncture (LP) because of unfamiliarity with the awaiting procedure and/or unrealistic ideas concerning post-LP complications. In light of increased number of LPs in diagnostic and research settings, our institute has developed an educational video for patients and caregivers in which we inform them about and prepare them for the LP procedure. This video was based on the latest literature and was developed with the help of communication experts, medical doctors, and two separate patient panels.

Cognitive Impairment in a Subset of Breast Cancer Patients After Systemic Therapy-Results From a Longitudinal Study.

CONTEXT: Studies indicate adverse effects of breast cancer (BC) and cancer treatment on cognitive function. OBJECTIVES: To investigate the effects of systemic treatment on cognitive performance in BC patients. METHODS: Participants were BC patients scheduled to receive systemic treatment (BC + SYST; n = 31), or no systemic treatment (BC; n = 24) and no-cancer (NC) controls (n = 33). Neuropsychological examinations were used to study cognitive performance on 18 tests grouped into eight cognitive domains, before adjuvant treatment (T1) and six months after chemotherapy (T2), or at similar intervals. We also assessed health-related quality of life, anxiety and depression, mood, stress, and cognitive problems. Analysis of variance was used to assess group differences of cognitive performance and multivariate normative comparison to classify impairment, comparing scores of each participant against the distribution of the scores of NC controls. RESULTS: Of BC + SYST, 16% were cognitively impaired at T2, compared to 4% in BC and 6% in NC. Although not significant, we observed moderate effect sizes for worse performance in the BC + SYST group compared to NC (Flanker congruent [effect size {ES} = 0.44] and stimulus incongruent [ES = 0.44]) and compared to BC (Controlled Oral Word Association Test [ES = 0.47], digit span [ES = 0.41], and Hopkins Verbal Learning Test immediate [ES = 0.71] and delayed recall [ES = 0.65]). Cognitively impaired patients had a significantly lower estimated premorbid intelligence, worse physical and social functioning, and more distress at T2 compared to unimpaired patients. CONCLUSION: Our findings indicate that cognitive impairment after systemic treatment occurs in a subset of BC patients. The predictive value of demographic and psychosocial factors in cognitive impairment should be further investigated in a larger sample of impaired patients.