On 7 February, the Alzheimer’s and Dementia journal published a global inter-societal Delphi consensus on outcome measures for Alzheimer’s disease (AD), co-authored by a group of experts including our Executive Director, Jean Georges. As Alzheimer’s disease (AD) progresses, people experience many different symptoms, ranging from memory problems to issues with language, social engagement and coordination. AD also affects quality of life, such as the ability to practice hobbies, or maintain relationships in the same way. Clinicians measure these outcomes, and the impact they have on patients using an array of tests and assessments. However, clinical studies and trials inconsistently use these outcome measures, making it hard to compare and interpret results. It is also unclear which are the most appropriate, robust and feasible measures to use in routine clinical practice. To address these questions, a group of experts from many different backgrounds was convened, including patients, patient representatives, family doctors, nurses and healthcare professionals from across the globe.
Chaired by Prof. Giovanni Frisoni (University of Geneva, Switzerland), this group used a Delphi process of voting to prioritise AD outcome measures for use in clinical practice when caring for patients who have symptomatic AD, particularly in the mild cognitive impairment, mild and moderate dementia stages. The list of outcomes was identified using a detailed, systematic review of the existing literature. Domains represented included cognitive abilities, functional abilities, behavioural and psychiatric symptoms, along with quality of life measures for patients or caregivers and family, among others. Together, the group achieved consensus on prioritising defined outcomes for patients according to their stage of AD. Prioritised cognitive tests including the mini-mental state exam (MMSE) and Montreal Cognitive Assessment (MoCA), which was identified as a well-validated tool that is easy to administer. In the patient quality of life (QoL) domain, experts prioritised outcomes that measure the impact of AD on relationships, social contact and remaining active, which were all identified as important for the well-being of patients. These outcomes can be measured using tests such as QoL-AD, DEMQoL and EQ-5D-5L.
The experts also prioritised global outcome measures, in which patients are interviewed along with their caregiver or family members. The highest-scoring outcome measure in this category was the Clinical Dementia Rating (CDR) scale, which is frequently used in clinical trials. The experts highlighted the importance of involving patients and caregivers in developing and determining priority outcome measures, stating that more work is needed to develop instruments that integrate easily into clinical routines. Read the article below to see the full list of outcome measures: https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.12945