Patients' and caregivers' views on conversations and shared decision making in diagnostic testing for Alzheimer's disease: The ABIDE project.

Kunneman, Marleen; Pel-Littel, Ruth; Bouwman, Femke H; Gillissen, Freek; Schoonenboom, Niki S M; Claus, Jules J; van der Flier, Wiesje M; Smets, Ellen M A

Kunneman, Marleen; Pel-Littel, Ruth; Bouwman, Femke H; Gillissen, Freek; Schoonenboom, Niki S M; Claus, Jules J; van der Flier, Wiesje M; Smets, Ellen M A.

Afiliação

Kunneman M; Department of Medical Psychology, Academic Medical Center, Amsterdam, The Netherlands.
Pel-Littel R; Vilans Centre of Expertise for Long-Term Care, Utrecht, The Netherlands.
Bouwman FH; Alzheimer Center and Department of Neurology, VU University Medical Center and Amsterdam Neuroscience, Amsterdam, The Netherlands.
Gillissen F; Alzheimer Center and Department of Neurology, VU University Medical Center and Amsterdam Neuroscience, Amsterdam, The Netherlands.
Schoonenboom NSM; Department of Neurology, Spaarne Gasthuis, Haarlem, The Netherlands.
Claus JJ; Department of Neurology, Tergooi Hospital, Hilversum, The Netherlands.
van der Flier WM; Alzheimer Center and Department of Neurology, VU University Medical Center and Amsterdam Neuroscience, Amsterdam, The Netherlands.
Smets EMA; Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, The Netherlands.

Alzheimers Dement (N Y) ; 3(3): 314-322, 2017 Sep.

Article em En | MEDLINE | ID: mdl-29067338

ABSTRACT

ABSTRACT

INTRODUCTION:

This study aims to assess patients' and caregivers' views on and experiences with (1) decisions about diagnostic testing for Alzheimer's disease (AD) and (2) receiving test results.

METHODS:

We conducted separate focus groups with patients from three hospitals who underwent diagnostic testing for AD (N = 11) and their caregivers (N = 11). Audio recordings were transcribed verbatim and analyzed using MaxQDA.

RESULTS:

Patients and caregivers preferred and perceived active involvement in decision making, but the decision to initiate diagnostic testing seems to be made before the clinician-patient encounter. Patients and caregivers indicate that decisions are driven by a strong need to explain the patient's symptoms. They missed information on why different diagnostic tests were used, what the results of these tests were, and to what extent these results were (ab)normal.