Editorial: Transition care in primary immunodeficiencies
Bibliographic record
Abstract
Transition has been defined as 'a purposeful, planned process that addresses the medical, psychological, and educational/vocational needs of adolescents and young adults (AYA) with chronic physical and medical conditions as they move from childcentered to adult-oriented health care systems' (1).Inborn Errors of Immunity (IEI) are chronic rare disorders that result in impaired, Almost half the countries in their study reported having no practice of transition care.One of the major challenges was the reluctancy of patients and caregivers to adapt to unfamiliarized adult healthcare systems. Inadequate ratio of adult immunologists and facilities for transfer as well as lack of training in transition care were also barriers to smooth transition.It is now well established that an effective process is of utmost importance to improve long term outcome of AYA with chronic conditions. Timing and progression of transition preparation during adolescence is key. Some tools assessing youth readiness for transition are available (mostly in English language). However, both the study by Chan CM et al. and the previous ERN RITA survey highlighted lack of formal transition guidelines for PID as a gap that needs to be addressed (3,4). In this issue, To date, there is relatively little data about patient experience of transition in PID. In this special issue, two studies address this gap. Ouimet F. and adult colleagues from Montréal, Quebec, Canada examine the common transition difficulties for IEI patients with chronic illness which encompassed challenges of changing health care teams as well as issues around developing independence. The authors outline a set of recommendations reported by youths and their families. These include having a joint clinic with both pediatric and adult team, meeting health care professionals from the adult clinical unit, providing information about the adult healthcare setting (including having clear instructions on how and who to contact in case of emergencies) (7). A transition coordinator (such as a dedicated nurse) and connection with a network of youth (and caregivers) who transitioned recently for peer meetings were also recommended. Self-advocacy and medication management were reported by King C et al. as areas of challenge identified by patients during transition. Their study additionally highlighted the specific aspect of unnecessary and costly duplication of investigations (especially laboratory testing) in new transitioning patients. They suggest that implementing a formal transition protocol could minimize these costs (8).These studies highlight the need for further research to understand the parents and caregivers' point of view to inform improvements in transition for PID and develop formal guidelines is needed.Contributions of multidisciplinary health care professionals -pediatric and adult teams, clinical psychologists, and ethicists -alongside contributions of colleagues from different health care systems greatly enriched the perspectives on this topic, highlighting the importance of standardized integration of transition practice towards betterment of transiting PID patients into adulthood.
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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) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.002 | 0.000 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.002 | 0.000 |
| Research integrity | 0.006 | 0.006 |
| Insufficient payload (model declined to judge) | 0.000 | 0.001 |
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; both teacher heads agree on what is shown here.
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".