A survey of adult caregivers of people with developmental and epileptic encephalopathies: A long-term care planning needs assessment
Bibliographic record
Abstract
OBJECTIVE: Provide the perspective of caregivers planning for adulthood in people with developmental and epileptic encephalopathies (DEEs). RESULTS: Family members (N = 134) of people with DEE (1-44 years old) responded to an anonymous, internet-based survey to assess the needs of DEE families. Respondents included parents/guardians (n = 121, 90.3 %) and adult siblings ≥18y (n = 13, 9.7 %). Diagnoses included Dravet syndrome (n = 71), Lennox-Gastaut syndrome (n = 38), PCDH19-related epilepsy syndrome (n = 8), CDKL5 deficiency disorder (n = 5), SYNGAP1-related DEE (n = 5), STXBP1-related DEE (n = 3), Dup15q syndrome (n = 2), infantile spasms and NPRL2 seizure disorder (dual diagnosis, n = 1), and Fragile X syndrome (n = 1). Constant safety monitoring was required for many people with DEE (82.1 %). Between 81.3 % and 92.5 % of people with DEE experienced developmental delays, intellectual disability, delayed language and speech issues, and movement and/or balance issues. Overall, 29 (21.6 %) respondents reported having adequate access to long-term adult care planning information. Medical, legal, and financial planning was completed by 22 (18.2 %) to 46 (38.0 %) parent/guardian respondents. Most adult siblings (12/13, 92.3 %) planned to receive responsibility for future care of their sibling with DEE. Respondents accessed relevant information via disease-specific patient organizations (81.3 %), other patients and/or caregivers (67.9 %), social media (53.7 %), primary care physicians (40.3 %), nurses (14.2 %), and neurologists (1.5 %). Respondents indicated concern as the people with DEE transition into adulthood. SIGNIFICANCE: Caregivers of adults with DEE are often family members, including adult siblings. Caregivers/families may benefit from receiving additional support to facilitate future planning of transition to adult care. The healthcare system may require changes to facilitate successful medical transition.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".