Communicating mild cognitive impairment diagnoses with and without amyloid imaging

Abstract

BackgroundMild cognitive impairment (MCI) has an uncertain etiology and prognosis and may be challenging for clinicians to discuss with patients and families. Amyloid imaging may aid specialists in determining MCI etiology and prognosis, but creates novel challenges related to disease labeling.MethodsWe convened a workgroup to formulate recommendations for clinicians providing care to MCI patients.ResultsClinicians should use the MCI diagnosis to validate patient and family concerns and educate them that the patient’s cognitive impairment is not normal for his or her age and education level. The MCI diagnosis should not be used to avoid delivering a diagnosis of dementia. For patients who meet Appropriate Use Criteria after standard-of-care clinical workup, amyloid imaging may position specialists to offer more information about etiology and prognosis. Clinicians must set appropriate expectations, including ensuring that patients and families understand the limitations of amyloid imaging. Communication of negative results should include that patients remain at elevated risk for dementia and that negative scans do not indicate a specific diagnosis or signify brain health. Positive amyloid imaging results should elicit further monitoring and conversations about appropriate advance planning. Clinicians should offer written summaries, including referral to appropriate social services.ConclusionsIn patients with MCI, there is a need to devote considerable time and attention to patient education and shared decision-making. Amyloid imaging may be a tool to aid clinicians. Careful management of patient expectations and communication of scan results will be critical to the appropriate use of amyloid imaging information.

Clinicians’ communication with patients receiving a MCI diagnosis: The ABIDE project

“…To attune to the individual's needs and preferences, clinicians, patients and care partners could discuss beforehand what potential test results might yield, and if biomarker testing is the preferred action at this point in time. Thus, the decision for or against testing, and which tests to use, should preferably be a shared decision [8,30]. Our results however suggest that clinicians who addressed the possibility of further biomarker testing, did not present all arguments for biomarkers testing.…”

“…Qualitative content analysis was used to systematically organize the data [13]. First, an initial coding scheme was developed, based on previous research [14,15], literature/guidelines on MCI [3,5,8], and literature on risk communication/provision of prognostic information [7], to deductively categorize the observed communication. The study-specific coding scheme (S1 Appendix) assessed clinician-patient communication regarding:…”

“…Most patients and care partners also have a strong need to understand the patient's symptoms, and for information on the prognosis and implications [14]. Grill and colleagues state in their practice guideline that amyloid testing may offer such information [8]. Their point of view is more progressive then what is recommended in the AAN [3] or the Dutch MCI practice guidelines [21].…”

“…Recently, recommendations were published on how to deliver AD biomarker results and subsequent prognostic information in MCI patients [8]. They state that a positive result, indicative for underlying AD pathology, should elicit further monitoring and conversations about future (care) planning.…”

Clinical Use and Utility of Amyloid Imaging

“…picture (24), or pointed to the need for adequate education (24,28,29). For cognitively impaired participants of research studies, Lingler et al argued (30) that it is time to disclose the respective amyloid imaging results, again providing adequate pre-and postdisclosure education.…”