Alzheimer Disease, Mild Cognitive Impairment (MCI), Subjective Cognitive Decline (SCD)
Conditions
Keywords
communication, biomarkers, counseling, diagnostic disclosure, MCI, SCD
Brief summary
The study investigate what information individuals with SCD or MCI and their co-participant would like to receive during pre-diagnostic counseling and diagnostic disclosure, and how this information should be conveyed.
Detailed description
Improved diagnostic work-up and the introduction of disease-modifying treatment have led to a shift towards earlier diagnosis. However, there are a need for better understanding of how best to communicate about biomarker use, assessment, and results in individuals with subjective cognitive decline (SCD) and mild cognitive impairment (MCI). Objective: The overarching objective of this study is: To understand what information individuals with SCD or MCI and their co-participant would like to receive during pre-diagnostic counseling and diagnostic disclosure, and how this information should be conveyed. Methods: a prospective survey study Persons diagnosed with SCD or MCI and co-participants will be recruited consecutively from the memory clinic, Copenhagen University Hospital - Rigshospitalet (Denmark), Toulouse University Hospital, (France), University Medical Centre Ljubljana (Slovenia) and Universitair Ziekenhuis Brussel (Belgium) Approximately 30 persons and respective co-participants will be included from each hospital over a period of 12 months. Each participating person and co-participant will be asked to complete a very brief questionnaire immediately after disclosure of the diagnosis, and another questionnaire 2-6 weeks after the disclosure visit.
Interventions
OTHERquestionnaire
Questionnaire regarding biomarker counseling and diagnostic disclosure
Sponsors
Toulouse University Hospital, Department of Geriatric & Internal Medicine, France
Universitair Ziekenhuis Brussel, Department of Neurology, Belgium
University Medical Centre Ljubljana, Department of Neurology, Slovenia
Danish Dementia Research Centre
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
40 Years to 80 Years
Healthy volunteers
No
Inclusion criteria
* Diagnosed with SCD or MCI * Lumbar puncture performed during the diagnostic process * Age at or below 80 years * MMSE at or above 24
Exclusion criteria
* Diagnosis of current major psychiatric disorder (schizophrenia, bipolar disorder, psychosis) * Current excessive alcohol intake or substance abuse Inclusion criteria for the co-participant: * Attended the diagnostic disclosure visit together with the individual diagnosed with SCD or MCI
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Important issues in communication | From enrollment to the second questionnaire after 6 weeks | Rating of which issues are important for persons with SCD or MCI and their co-participant in the pre-diagnostic counseling and diagnostic disclosure communication. |
Contacts
Primary ContactMarie Bruun, MD, PhD
Backup ContactKristian S Frederiksen, MD, PhD
Outcome results
None listed