Experiences with Premorbid SUDEP Discussion among Participants in the North American SUDEP Registry (NASR) (P6.361)
Bibliographic record
Abstract
Objective: To examine experiences and attitudes toward a discussion of sudden unexpected death in epilepsy (SUDEP) among those who lost a family member to SUDEP. Background: More than half of epilepsy-related deaths are due to SUDEP. Surveys of both neurologists and persons with epilepsy (PWE) have shown that clinicians rarely discuss SUDEP with patients or caregivers. However, most patients and caregivers wish to know about the risk of SUDEP and routine disclosure of SUDEP risk has been recommended by several organizations. Methods: Participants were family members of deceased PWE enrolled in the North American SUDEP Registry (NASR), a clinical and biospecimen repository established in 2011 with participants in the U.S. and Canada. At enrollment, participants completed a detailed intake interview that includes discrete and open-ended questions on their own experience with SUDEP discussion. Final cause of death and epilepsy characteristics were determined from the interview and review of medical records. Results: As of October 2015, 100 cases of definite/probable SUDEP were enrolled in NASR and had intake interviews completed by a family member. Median age of death was 25 (1.75-70), 36[percnt] of the decedents were female. The median age of epilepsy onset was 9 years (0-65) and the median duration of epilepsy was 10.6 years. 18 (18[percnt]) of family members had heard of SUDEP beforehand; of those, SUDEP discussion was initiated by their neurologist in only 7 cases. Of those family members who had not been aware of SUDEP, 68.2[percnt] wished it had been discussed and 23.1[percnt] were unsure. Only 9 (9[percnt]) participants felt that they would not have wanted to know about SUDEP before their family member’s death. Conclusions: These findings support the observation that SUDEP is rarely discussed with PWE and the majority of families bereaved by SUDEP wished they were counseled about the risk.
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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 | 0.006 | 0.017 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.005 | 0.002 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
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".