[P2–281]: CAREGIVER BURDEN IN FAMILIAL FRONTOTEMPORAL DEMENTIA SUBJECTS: PRELIMINARY DATA IN THE LEFFTDS COHORT
Bibliographic record
Abstract
The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) Consortium involves 8 North American centers with the purpose of evaluating subjects annually with the 3 most common genetic mutations in familial FTD. We hypothesized that caregiver burden scores would increase among symptomatic FTD subjects when followed longitudinally. The Zarit Caregiver Interview (ZCI) was completed by all informants. Scores are interpreted as follows: 0–21 little or no burden, 21–40 is mild to moderate burden, and 41–60 is moderate to severe burden. Subjects were assessed by a clinician using a modified version of the Clinical Dementia Rating (CDR), with a score of 0 reflecting normal neurologic functioning, 0.5 reflecting minimally symptomatic FTD, and ≥1 reflecting overtly symptomatic FTD. Among 188 subjects evaluated at Visit 1 in whom the ZCI was completed, the mean (SD) scores were as follows: CDR=0 − 6.1 (8.8), CDR=0.5 − 8.5 (8.3), CDR≥1 − 27.8 (14.7). Forty-three (23%) have been evaluated at Visit 2, with mean (SD) scores as follows: CDR=0 − 5.5 (5.5), CDR=0.5 − 17.2 (14.6), CDR≥1 − 30.2 (15.0). Among the 43 with ZCI scores at both Visits 1 and 2, the median (Q1, Q3) score at Visit 1 was 11 (2, 24) and at Visit 2 was 13 (4, 26). Using a Wilcoxon Signed Rank Test to compare ZCI scores, there were trends for increasing burden among CDR=0.5 (p=0.078) and all subjects (p=0.077). As expected, analyses using cross-sectional data suggest that caregiver burden increases with increasing CDR score, albeit still within the low burden range. Longitudinal data in a sample of subjects evaluated twice over 1 year suggests caregiver burden is trending upward, particularly among CDR=0.5 subjects. Additional longitudinal data in this cohort will provide insights on whether increasing caregiver burden may predict imminent phenoconversion from asymptomatic to minimally symptomatic FTD, and minimally symptomatic to overtly symptomatic FTD.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.002 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".