Transition from pediatric to adult health services: A survey of challenges, needs, and preferences of youths and parents
Bibliographic record
Abstract
Transition from pediatric to adult healthcare is a critical period. Recommendations have pointed to greater preparation of youths and families and better coordination. Considerations such as patient values and preferences may – if not taken into consideration – impede uptake of clinical recommendations. This survey-based study aimed to better understand challenges, needs, and intervention preferences of youths and parents during transition. Two online surveys were designed to investigate challenges, needs, and intervention preferences of youths with a chronic or rare condition and parents during transition. The youth survey included the French translation of the Transition Readiness Assessment Questionnaire (TRAQ). Additional questions were derived from an interview-based study and aimed to grasp issues related to human flourishing in addition to more conventional clinical issues related to the transition process. Descriptive statistics were used and ANOVAs to detect differences between the groups when applicable. 86 youths and 94 parents completed the survey. Average scores for TRAQ subscales were high except for “Tracking health issues” and “Appointment keeping”. Youths and parents reported being able to give their opinion. Parents were judged to be slightly over-involved. Ongoing involvement of parents in health management was desired. Awareness of differences between pediatric and adult healthcare was high, but a source of notable concern (e.g., accessibility of different medical and professional services). Information on transition was lacking. Installing a pivot-person, visits to the adult hospital, meeting other youths, and accessing transition videos were supported interventions. Transition readiness can be high, but significant challenges can still be present and salient. Youths and adults want to be involved and informed to prepare actively for transition through meetings or adapted materials. • Transition is a pivotal period, and clinical approaches would gain from considerations beyond biomedical aspects of care. • Scores to standardized instruments (such as the TRAQ) can be high, but youths and parents nevertheless experience distress. • Youths and parents desire more information, more support and preparation, and can be active agents in the transition process. • Interventions and information catering to youths and parents in accessible formats (e.g., short videos) are promising.
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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 | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 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".