Development of Disease-Specific Health-Related Quality-of-Life Instruments for Children With Immune Thrombocytopenic Purpura and Their Parents
Bibliographic record
Abstract
PURPOSE: Immune thrombopenic purpura (ITP) is an important childhood hematologic disorder that is often frightening to patients and their parents because of its acute onset and bleeding symptoms. There is no consensus on the management of ITP in children. Pediatric hematologists have differing management philosophies, yet most, explicitly or implicitly, incorporate into their management approach the potential impact on the child's and family's quality of life. There is no validated ITP-specific health-related quality-of-life instrument for use with children with ITP, nor is there one to evaluate the burden experienced by their parents. ITP is usually a self-limited disorder. With current controversy over management approaches, an evaluation of the disease burden experienced by the child and the family may assist with the assessment of alternative treatment approaches. METHODS: Using standard clinimetric methodology, 88 children with acute or chronic ITP, along with their parents, participated in the development of the instruments. RESULTS: The 26-item ITP-Child Quality-of-Life Questionnaire includes five domains: treatment side effect-related, intervention-related, disease-related, activity-related, and family-related. This instrument can be used as a self-completed instrument for most children older than 7 years or as a proxy-completed instrument by parents of children younger than 7 years. The 26-item ITP-Parental Burden Quality-of-Life Questionnaire includes six domains: concerns related to diagnosis/investigation, treatment/disease monitoring, monitoring of child's activities, interference with daily life, disease outcome, and emotional impacts. CONCLUSIONS: The first steps of the development of these formally developed instruments are complete. The instruments are available for study to validate and test their responsiveness through use in clinical research studies. Such instruments are increasingly recognized as important for comprehensive measurement of patient outcomes in this and other areas of pediatric hematology/oncology practice.
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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 | 0.017 | 0.036 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.002 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 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".