Communicating uncertainties when disclosing diagnostic test results for (Alzheimer's) dementia in the memory clinic: The ABIDE project

Background The development of novel diagnostics enables increasingly earlier diagnosis of Alzheimer's disease (AD). Timely diagnosis may benefit patients by reducing their uncertainty regarding the cause of symptoms, yet does not always provide patients with the desired certainty. Objective To...

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Bibliographic Details
Published in:	Health expectations : an international journal of public participation in health care and health policy Vol. 23; no. 1; pp. 52 - 62
Main Authors:	Visser, Leonie N. C., Pelt, Sophie A. R., Kunneman, Marleen, Bouwman, Femke H., Claus, Jules J., Kalisvaart, Kees J., Hempenius, Liesbeth, Beer, Marlijn H., Roks, Gerwin, Boelaarts, Leo, Kleijer, Mariska, Flier, Wiesje M., Smets, Ellen M. A., Hillen, Marij A.
Format:	Journal Article
Language:	English
Published:	England John Wiley & Sons, Inc 01-02-2020 John Wiley and Sons Inc Wiley
Subjects:	Aged Alzheimer Disease - diagnosis Alzheimer's disease Ambulatory Care Facilities Biomarkers Caregivers Caregivers - psychology Clinics Communication Dementia Dementia disorders Diagnosis Diagnostic systems Diagnostic tests Diagnostic Tests, Routine diagnostic work‐up Disclosure Dutch language Female Health Personnel - statistics & numerical data Humans Likert scale Male Medical diagnosis Medical records Memory memory clinic Middle Aged Netherlands Neurodegenerative diseases Original Research Paper Original Research Papers Patients Patients - psychology Patients - statistics & numerical data physician‐patient communication Qualitative Research Questionnaires Signs and symptoms Sociodemographics Uncertainty Netherlands dementia physician-patient communication uncertainty Alzheimer's disease diagnostic work-up memory clinic
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Summary:	Background The development of novel diagnostics enables increasingly earlier diagnosis of Alzheimer's disease (AD). Timely diagnosis may benefit patients by reducing their uncertainty regarding the cause of symptoms, yet does not always provide patients with the desired certainty. Objective To examine, using both quantitative and qualitative methods, uncertainty communicated by memory clinic clinicians in post‐diagnostic testing consultations with patients and their caregivers. Methods First, we identified all uncertainty expressions of 22 clinicians in audiotaped post‐diagnostic testing consultations with 78 patients. Second, we statistically explored relationships between patient/clinician characteristics and uncertainty expressions. Third, the transcribed uncertainty expressions were qualitatively analysed, determining the topic to which they pertained, their source and initiator/elicitor (clinicians/patients/caregivers). Results Within 57/78 (73%) consultations, clinicians expressed in total 115 uncertainties, of which 37% elicited by the patient or caregiver. No apparent relationships were found between patient/clinician characteristics and whether or not, and how often clinicians expressed uncertainty. Uncertainty expressions pertained to ten different topics, most frequently patient's diagnosis and symptom progression. Expressed uncertainty was mostly related to the unpredictability of the future and limits to available knowledge. Discussion and conclusions The majority of clinicians openly discussed the limits of scientific knowledge and diagnostic testing with patients and caregivers in the dementia context. Noticeably, clinicians did not discuss uncertainty in about one quarter of consultations. More evidence is needed on the beneficial and/or harmful effects on patients of discussing uncertainty with them. This knowledge can be used to support clinicians to optimally convey uncertainty and facilitate patients' uncertainty management.
Bibliography:	Funding information This study is funded by ZonMW‐Memorabel (ABIDE; project/grant number 733050201), in the context of the Dutch ‘Deltaplan Dementie’. The funding source was not involved in study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication. ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-3 content type line 23 ObjectType-Undefined-2 Leonie N. C. Visser and Sophie A. R. Pelt contributed equally to this work.
ISSN:	1369-6513 1369-7625
DOI:	10.1111/hex.12964