Memory clinic clinicians’ preferences and needs for communication with patients: A multi‐national survey study from EU‐FINGERS & LETHE projects

Abstract

AbstractBackgroundIncreased attention to pre‐dementia stages of Alzheimer’s disease (AD) creates new challenges for clinician‐patient communication. To assist clinicians in these challenges, we aimed to: 1) identify their perspectives on communicating about diagnostic testing, biomarker test results, dementia risk, and prevention, and 2) inventory their need for communication support.MethodBetween June and November 2021, 160 memory clinic clinicians from 21 European countries (56% 31‐50yrs; 59% female, 14±10yrs of experience) completed a digital survey in which they provided their opinions based on five hypothetical patient cases: 1) AD dementia, 2) Mild Cognitive Impairment (MCI) with positive (+) AD biomarkers, 3) Subjective Cognitive Decline (SCD) with positive AD biomarkers, 4) MCI with negative (‐) AD biomarkers, and 5) SCD with negative AD biomarkers. Additionally, we asked which amount and what type of support (online tools and/or skills training) would be appreciated for 10 listed communication skills. Descriptive statistics were used to report characteristics and survey responses.ResultMost clinicians indicated they would communicate syndrome diagnosis (66‐88% of clinicians) and biomarker results (97‐100%) to all five hypothetical patients. In case of positive biomarkers, clinicians were more hesitant to explicitly mention the presence of AD in the SCD+ case (29%) than in the MCI+ case (68%). Clinicians rather emphasized that it is not yet known what biomarker positivity means for the patient (68% in SCD+ vs. 32% in MCI+). Almost all clinicians reported discussing prognosis/dementia risk (79‐98%) and prevention (90‐99%), often tailored to patient characteristics and preferences. Of note, more than half of clinicians indicated that they preferred ‘(very) much’ support regarding 9 out of 10 listed communication skills (Figure 1), via online tools (34%), training (13%), or both (32%).ConclusionEuropean clinicians have a positive attitude towards communicating about early diagnosis of AD, dementia risk, and prevention. Clinicians differ in whether and how they explain the meaning of positive AD biomarkers to patients with SCD or MCI, reflecting the current debate in the field. Moreover, we identified a need for communication support on these topics. Fulfilling clinicians’ needs might help to attune memory clinic care even better to individual patients.