Authors: Arenda Mank, Ingrid S. van Maurik, Els D. Bakker, Esther M.M. van de Glind, Wiesje van Der Flier, Leonie N.C. Visser
Published: 2020-12-07
DOI: 10.1002/alz.040866
Source: Full article
AbstractBackgroundAlzheimer’s disease (AD) is characterized by a long predementia stage and high symptom variability. Prediction of disease progression is important in clinical decision‐making and care planning. Prognostic studies mainly attempted to predict progression to dementia, but it is questionable whether from a patient’s perspective, this is most relevant. We aimed to identify endpoints of relevance to patients and caregivers in AD progression, as part of the European ADDITION project.MethodWe used a two‐step approach. First, we conducted four focus groups with in total 12 patients and 14 care partners between July and October 2019 (Table 1). Participants were recruited through two Dutch memory clinics, and purposefully selected to compose heterogeneous groups in terms of gender, age, and disease stage and setting. Transcripts of the audiotaped focus groups were independently coded by two researchers using thematic content analysis. The resulting list of endpoints then served as input for an online survey. Patients and caregivers were asked to potentially add endpoints, rate their importance, and rank them in order of relevance.ResultEight major categories of endpoints were: 1) Cognition (e.g. How long do I still recognize others?); 2) Functioning and dependency (e.g. How long can I still perform hobbies?); 3) Behavioral and neuropsychiatric (e.g. When can I expect behavioral problems?); 4) Social environment (e.g. When should I tell others?); 5) Psychical health (e.g. Which physical symptoms can I expect?); 6) Patient quality of life; 7) Time to death; 8) Caregiver‐oriented outcomes (e.g. How is caregiver quality of life impacted?). In the preliminary analysis of the survey (data collection ongoing; available now N=34 patients; N=36 caregivers), we found that both patients and caregivers considered the cognition‐related endpoints as most important (Table 2). We are currently extending data collection to other European countries for cross‐cultural validation.ConclusionWe identified patient and caregiver‐relevant outcomes, and will incorporate these in a large‐scale, online data‐collection. The ultimate goal is to predict these endpoints in individualized prediction modeling, that will help to provide patients and care partners with personalized information on the expected disease course.