Characterizing Difficulty and Life Disruption During B‐Acute Lymphoblastic Leukemia Therapy From the Perspective of Parents: A Survey Study
Bibliographic record
Abstract
PURPOSE: Children with B-acute lymphoblastic leukemia (B-ALL) treated in resource-intensive settings have a high likelihood of cure, but therapy is long, burdensome, and associated with substantial toxicities. Understanding parents' perceptions of the most disruptive and difficult aspects of B-ALL treatment is critical to future improvements in care. We aimed to understand which child side effects, chemotherapeutic agents, and aspects of leukemia care are rated difficult or disruptive by parents, and variations based on parent or child characteristics. METHODS: Parents of children (1-19 years) currently or previously treated for B-ALL who are members of the Momcology pediatric cancer support and advocacy organization were invited to complete an online survey on difficult and disruptive aspects associated with their child's diagnosis. Data were analyzed descriptively, and inferential statistical tests evaluated characteristic-based differences. RESULTS: Parents of 442 children completed the survey. Nausea/vomiting was the most commonly reported difficult side effect during pre-maintenance therapy (55.4%), followed by decreased energy (41.4%) and neuropathy (40.7%). Mood changes were the most difficult side effect during maintenance therapy (29.3%). The extent of difficulty associated with each side effect reported was high. Most parents (79.6%) rated oral corticosteroids as the most difficult chemotherapeutic agent. The components of care most difficult and disruptive were unplanned hospital visits (79.9%) and compromised immunity (76.9%). Parent-rated difficulties significantly varied by child age at diagnosis. CONCLUSIONS: Parents of children with B-ALL report substantial child and family difficulties that are directly attributable to leukemia treatment. These findings should inform areas of investigation for optimizing treatment regimens and supportive care.
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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 | 0.003 | 0.010 |
| 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 | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 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".