<b>PATIENT PERCEPTIONS AND ADVOCACY IN ICHTHYOSIS: A REVIEW OF PSYCHOSOCIAL AND SUPPORTIVE CARE MODELS </b>
Bibliographic record
Abstract
Background: Ichthyosis is a range of rare, genetically heterogeneous conditions that are skin disorders caused by over-scaling and hindrance in skin barrier. Clinical care has made a significant improvement however; patients experience very serious psychosocial, emotional and societal difficulties. Objective: The objective of this review is to highlight the perception and the quality of life of the patients affected by ichthyosis experience and the role of advocacy and sponsorship organizations in championing patient-centered care. Method: A comprehensive literature search was conducted across databases including PubMed, Scopus, and Google Scholar for articles published up to May 2024. Studies focusing on patient experiences, advocacy efforts, and care strategies in ichthyosis were included. Quality assessment was performed using the Critical Appraisal Skills Program (CASP) for qualitative studies and the Newcastle-Ottawa Scale (NOS) for observational studies. Results: Thematic analysis revealed three findings: (1) high psychological and social load patients face because of visible symptoms, (2) emotional distress and social isolation, and (3) stratification points in communication between patients and healthcare providers. Advocacy organizations like the Foundation for Ichthyosis & Related Skin Types (FIRST) were identified as instrumental in education, psychosocial support, as well as policy advocacy. Conclusion: Ichthyosis management should not only be limited to clinical outcomes but should also focus on emotional and social wellbeing of the patient. The networks of sponsorship and advocacy play a crucial role in closing the care gaps and enabling patients.
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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 | 0.007 | 0.018 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.004 | 0.005 |
| Science and technology studies | 0.001 | 0.002 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.002 | 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".