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

Abstract

AbstractIntroductionWe formerly identified 17 informational topics on which health care professionals, patients and care‐partners agree that these should be discussed during diagnostic consultations in memory clinics [1]. In addition, 8 topics were identified as highly relevant by at least one, but not all three groups. Here, we studied to what degree these 25 informational topics are actually discussed during diagnostic consultations and at whose initiative, i.e., the clinician, the patient or the care‐partner.MethodsAudio‐recordings of pre‐ and post‐test clinician‐patient consultations of 71 patients, seen by 32 clinicians (sample descriptives in table 1), were collected in eight memory clinics and independently content‐coded by two coders [2]. The coding scheme encompassed the 25 informational topics, grouped into 4 categories; (i) diagnostic testing, (ii) test results, (iii) diagnosis and prognosis, and (iv) practical implications.ResultsMany topics were discussed frequently, though individual topics ranged from being discussed with 2/71 (3%) to 70/71 (99%) of the patients. On average, 12 (SD=4) of the 25 topics were discussed per patient, during the diagnostic process. Topics in the category ‘diagnosis and prognosis’ were discussed least frequently (see figure 1). Patients and/or care‐partners rarely initiated discussion of a topic (topic initiated by clinician: 90%). When they did, the topic was most often one of the least frequently addressed topics (see figure 2), as well as one of the eight topics deemed highly relevant by at least one group (mostly patients and/or care‐partners), but not all three.ConclusionWe found most topics to be addressed quite frequently by clinicians in memory clinics, validating the feasibility of addressing these topics. Nevertheless, we observed considerable variation when looking at individual topics. Discussion of diagnostic or prognostic information was relatively limited, while patients and care‐partners consider this topic highly relevant, as substantiated by initiating discussion on diagnosis and/or prognosis. Hence, diagnostic or prognostic information should receive more attention in clinical practice. In addition, providing the topic list to patients prior to their visit could allow them to better prepare for the consultation and stimulate active participation.