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Record W4321499575 · doi:10.1186/s13023-023-02631-7

Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus

2023· article· en· W4321499575 on OpenAlexaff
S. Oro, Veronika Schmidt, Milad Ameri, Riichiro Abe, Alain Brassard, Arash Mostaghimi, Amy S. Paller, Antonino Romano, Biagio Didona, Benjamin H. Kaffenberger, B. Ben Saïd, Bernard Yu‐Hor Thong, B. Ramsay, Eva Březinová, B. Milpied, Charlotte G. Mørtz, Chia‐Yu Chu, Chie Sotozono, J. Gueudry, Dónal G. Fortune, Mourad Dridi, Danielle Tartar, G. Do–Pham, Éric Gabison, Elizabeth J. Phillips, Fiona Lewis, Carmen Sălăvăstru, Barbara Horváth, John Dart, Jane Setterfield, Jason Newman, John Schulz, A. Delcampe, Knut Brockow, Lucia Seminario‐Vidal, Lukas Jörg, Maggie Watson, Margarida Gonçalo, Michaela Lucas, Miguel Ángel Fuentes Torres, Megan H. Noe, Natsumi Hama, Neil H. Shear, Pauline O’Reilly, P. Wolkenstein, Paolo Romanelli, Roni P. Dodiuk‐Gad, Robert G. Micheletti, George‐Sorin Ţiplica, Robert L. Sheridan, Saaeha Rauz, Sajjad Ahmad, Ser‐Ling Chua, T. H. Flynn, Werner J. Pichler, Stephanie T. Le, Emanual Maverakis, Sarah Walsh, Lars E. French, Marie‐Charlotte Brüggen

Bibliographic record

VenueOrphanet Journal of Rare Diseases · 2023
Typearticle
Languageen
FieldMedicine
TopicDrug-Induced Adverse Reactions
Canadian institutionsHealth Sciences CentreUniversity of TorontoSunnybrook Health Science CentreCanadian Bulletin of Medical History
Fundersnot available
KeywordsToxic epidermal necrolysisMultidisciplinary approachMedicineHuman geneticsDelphiDelphi methodIntensive care medicinePolitical scienceDermatologyComputer scienceGeneticsBiologyLaw

Abstract

fetched live from OpenAlex

BACKGROUND: Long-term sequelae are frequent and often disabling after epidermal necrolysis (Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN)). However, consensus on the modalities of management of these sequelae is lacking. OBJECTIVES: We conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae. METHODS: Participants were sent a survey via the online tool "Survey Monkey" consisting of 54 statements organized into 8 topics: general recommendations, professionals involved, skin, oral mucosa and teeth, eyes, genital area, mental health, and allergy workup. Participants evaluated the level of appropriateness of each statement on a scale of 1 (extremely inappropriate) to 9 (extremely appropriate). Results were analyzed according to the RAND/UCLA Appropriateness Method. RESULTS: Fifty-two healthcare professionals participated. After the first round, a consensus was obtained for 100% of 54 initially proposed statements (disagreement index < 1). Among them, 50 statements were agreed upon as 'appropriate'; four statements were considered 'uncertain', and ultimately finally discarded. CONCLUSIONS: Our DELPHI-based expert consensus should help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame machine prediction

Teacher imitation

Not 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.

metaresearch head score (Codex)0.183
metaresearch head score (Gemma)0.127
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Not applicable · Consensus signal: none
GenreCandidate signal: Review · Consensus signal: none
Teacher disagreement score0.183
Threshold uncertainty score0.966

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.1830.127
Meta-epidemiology (narrow)0.0010.001
Meta-epidemiology (broad)0.0010.001
Bibliometrics0.0030.002
Science and technology studies0.0040.004
Scholarly communication0.0030.003
Open science0.0020.011
Research integrity0.0020.003
Insufficient payload (model declined to judge)0.0020.000

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.

Opus teacher head0.031
GPT teacher head0.352
Teacher spread0.321 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.

The models applied no category: nothing in the taxonomy fit this work.
Study designNot applicable
Domainnot available
GenreReview

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".

Quick stats

Citations19
Published2023
Admission routes1
Has abstractyes

Explore more

Same venueOrphanet Journal of Rare DiseasesSame topicDrug-Induced Adverse ReactionsFrench-language works237,207