Open AccessWhat patients want to know, and what we actually tell them: The ABIDE project
Author(s) -
Fruijtier Agnetha D.,
Visser Leonie N.C.,
Bouwman Femke H.,
Lutz Rogier,
Schoonenboom Niki,
Kalisvaart Kees,
Hempenius Liesbeth,
Roks Gerwin,
Boelaarts Leo,
Claus Jules J.,
Kleijer Mariska,
Beer Marlijn,
Flier Wiesje M.,
Smets Ellen M.A.
Publication year - 2020
Publication title -
alzheimer's and dementia: translational research and clinical interventions
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.49
H-Index - 30
ISSN - 2352-8737
DOI - 10.1002/trc2.12113
Subject(s) - coding (social sciences) , dementia , psychology , medicine , medical education , family medicine , sociology , disease , pathology , social science
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.