Patients’ evaluation of information provision in the memoryclinic

Background: We examined how patients evaluated the information provided duringtheir diagnostic trajectory in a tertiary memory clinic.

Methods: Between February 2021 and June 2023, 802 patients of Alzheimer Cen-ter Amsterdam completed a questionnaire assessing satisfaction with the amountand perceived helpfulness of information (1–4 point Likert scale), wish for more/lessinformation (yes/no), and which information was missed/redundant (open-ended). Wetested effects of age, sex, education, syndrome- and etiological diagnosis, Mini-MentalState Examination (MMSE), and time since diagnostic trajectory.

Results: Patients were satisfied with the amount (3.1 ± 0.8) and helpfulness (3.1 ± 0.9)of information. Satisfaction was highest among those who recently underwent thediagnostic trajectory (decline over time p < 0.001). One quarter (214/802 [27%])wished for more information, particularly those with higher MMSE scores (p = 0.01),mainly concerning specific test results and prognosis. Few (18/802 [2%]) preferred lessinformation.

Discussion: Our results highlight the importance of providing sufficient and tailoredinformation, as well as recurrently checking information needs over time.