NCI, NHLBI/PBMTC First International Conference on Late Effects after Pediatric Hematopoietic Cell Transplantation: Health-Related Quality of Life, Functional, and Neurocognitive Outcomes
Bibliographic record
Abstract
The purpose of this manuscript is to summarize issues relevant to health-related quality of life (HRQL), physical function, and neurocognitive function for survivors of pediatric hematopoietic stem cell transplantation (HCT). The physiologic and psychological demands of HCT and its sequelae have the potential to substantially alter HRQL. When compared with research on adult HCT recipients, research in pediatric HRQL following HCT has lagged considerably. Initially, this lag was because of limited validated questionnaires, small numbers of affected patients, and a general lack of salience for the topic relative to traditional endpoints, such as transplant-related toxicity and potential mortality. The percentage of childhood HCT survivors with physical disability ranges from 7% to 17% in studies where the outcome was based on clinician or self-report measures, to over 40% in studies where the outcome was based on a directly measured physical performance task. Direct and comprehensive measures of physical performance may help further clarify the proportion of individuals who have subclinical problems amenable to intervention before apparent functional loss becomes a problem. There is a need to include longer term survivors in such an assessment. In terms of neurocognitive function, the majority of reports demonstrate relatively good function in survivors. However, it is clear that little or no data on outcomes beyond 5 years posttransplant have been obtained, and clinicians working with this population remain concerned regarding the cognitive functions of these survivors. Research focused on these domains should attempt to better understand the prevalence of the problem using child self-report and direct measurements of function, standardize measurement methods, and tools across trials, obtain longer term evaluations and begin to consider interventional trials.
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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 | 0.000 |
| 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".