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O1‐02‐03: A novel staging tool for determining disease severity in frontotemporal dementia patients
Author(s) -
Mioshi Eneida,
Hodges John
Publication year - 2009
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2009.05.198
Subject(s) - rasch model , frontotemporal dementia , psychology , cronbach's alpha , disinhibition , primary progressive aphasia , semantic dementia , dementia , aphasia , clinical psychology , disease , psychiatry , psychometrics , developmental psychology , medicine
Background: Frontotemporal dementia (FTD) patients present at first with a progressive deterioration of behaviour (bv-FTD) or language (semantic dementia, progressive non-fluent aphasia). As the disease progresses, however, the overall disabilities increase and behavioural and language symptoms merge across the different FTD subtypes. Despite important implications of better understanding of disease progression, no staging tool has yet been developed to track changes systematically. Methods: Data from 111 consecutive FTD patients from the Cambridge Early Onset Dementia Clinic were used for generating a novel FTD staging tool, using the Rasch analysis method. Mean length of disease, as measured by symptom onset, was 4.8 years. Mean patient age was 65; mean education was 13 years. Ratio of male : female patients was 3:1. The Rasch analysis provides the opportunity to identify which items best distribute patients in terms of their severity. In addition, the analyses place patients in a progression line, according to their level of ability. 82 questions on behavioural change and 41 questions on activities of daily living were the starting point for the Rasch analysis. Results: The Rasch analysis method generated a novel scale with a final set of 32 items, addressing behavioural and functional changes over time. Behavioural items (11) included questions related to change in motivation, disinhibition, impulsivity and appetite preferences whereas functional items (21) addressed changes in abilities to manage finances, prepare meals and looking after oneself. The final set of 32 items showed that the scale reliability was excellent, with a Cronbach alpha of 0.94. More importantly, Rasch item separation and patient separation was 3.85, indicating a progressive item and patient distribution, thus reflecting disease severity. Conclusions: Our new FTD staging scale is a powerful tool to assess patient’s progression throughout the disease. More importantly, the scale can be easily administered by health professionals to determine quickly the disease stage of FTD patients. Finally, the staging tool generates evidence which has important implications for the information given to families and patients. It can also be used for monitoring disease modifying agents and should contribute to a better understanding of disease progression in FTD.