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

Humans Stevens-Johnson Syndrome / complications Consensus Skin Disease Progression
Consensus Delphi Epidermal necrolysis Quality of life Sequelae Stevens-Johnson syndrome Toxic epidermal necrolysis

Journal

Orphanet journal of rare diseases
ISSN: 1750-1172
Titre abrégé: Orphanet J Rare Dis
Pays: England
ID NLM: 101266602

Informations de publication

Date de publication:
22 02 2023
Historique:
received: 22 08 2022
accepted: 06 02 2023
entrez: 23 2 2023
pubmed: 24 2 2023
medline: 25 2 2023
Statut: epublish

Résumé

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. We conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae. 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. 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. Our DELPHI-based expert consensus should help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.

Sections du résumé

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.

Identifiants

DOI: 10.1186/s13023-023-02631-7 PMID: 36814255 PMC: PMC9945700
pubmed: 36814255
doi: 10.1186/s13023-023-02631-7
pii: 10.1186/s13023-023-02631-7
pmc: PMC9945700
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

33

Informations de copyright

© 2023. The Author(s).

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Auteurs

S Ingen-Housz-Oro (S)

Department of Dermatology, AP-HP, Henri Mondor Hospital, 1 Rue Gustave Eiffel, 94000, Créteil, France. saskia.oro@aphp.fr.
ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France. saskia.oro@aphp.fr.
Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions TOXIBUL, Créteil, France. saskia.oro@aphp.fr.
EpiDermE, Université Paris Est Créteil, Créteil, France. saskia.oro@aphp.fr.
ORCID: 0000-0002-5383-7096

V Schmidt (V)

University Hospital Basel, Basel, Switzerland.
Faculty of Medicine, University of Zurich, Zurich, Switzerland.

M M Ameri (MM)

Faculty of Medicine, University of Zurich, Zurich, Switzerland. saskia.oro@aphp.fr.
Department of Dermatology, University Hospital Zurich, Zurich, Switzerland. saskia.oro@aphp.fr.
Christine Kühne-Center for Allergy Research and Education, Davos, Switzerland. saskia.oro@aphp.fr.

R Abe (R)

Division of Dermatology, Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan.

A Brassard (A)

Department of Dermatology, UC Davis Medical Center, Sacramento, CA, USA.

A Mostaghimi (A)

Department of Dermatology, Brigham and Women's Hospital, Boston, MA, USA.

A S Paller (AS)

Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

A Romano (A)

Oasi Research Institute-IRCCS, Troina, Italy.

B Didona (B)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Rare Disease Unit, I Dermatology Division, Istituto Dermopatico Dell'Immacolata, IRCCS, Rome, Italy.

B H Kaffenberger (BH)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
The Ohio State University Wexner Medical Center Division of Dermatology, Upper Arlington, OH, USA.

B Ben Said (B)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions TOXIBUL, Créteil, France.
Department of Dermatology, CHU Edouard Herriot, Lyon, France.

B Y H Thong (BYH)

Department of Rheumatology, Allergy and Immunology, Tan Tock Seng Hospital, Singapore, Singapore.

B Ramsay (B)

Department of Dermatology, University Hospital Limerick, Limerick, Ireland.

E Brezinova (E)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
First Department of Dermatovenereology, Masaryk University Faculty of Medicine, St. Ann's Faculty Hospital in Brno, Brno, Czech Republic.

B Milpied (B)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions TOXIBUL, Créteil, France.
Department of Adult and Pediatric Dermatology, Bordeaux University Hospitals, Bordeaux, France.

C G Mortz (CG)

Department of Dermatology and Allergy Center, Odense Research Center for Anaphylaxis (ORCA), Odense University Hospital, Odense, Denmark.

C Y Chu (CY)

Department of Dermatology, National Taiwan University Hospital, National Taiwan University College of Medicine, No. 7, Chung-Shan South Road, Taipei, 10002, Taiwan.

C Sotozono (C)

Department of Ophthalmology, Kyoto Prefectural University of Medicine, 465 Kajii-Cho, Hirokoji-Agaru, Kawaramach-Dori, Kamigyo-Ku, Kyoto, 602-0841, Japan.

J Gueudry (J)

Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions TOXIBUL, Créteil, France.
Department of Ophthalmology, CHU Charles-Nicolle, Rouen, France.

D G Fortune (DG)

Department of Psychology, University of Limerick, Limerick, Ireland.

S M Dridi (SM)

Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions TOXIBUL, Créteil, France.
MICORALIS Laboratory, Department of Periodontology, Faculty of Dentistry, Côte d'Azur University, Saint Roch Hospital, Nice, France.

D Tartar (D)

Department of Dermatology, University of California Davis, Sacramento, CA, USA.

G Do-Pham (G)

Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions TOXIBUL, Créteil, France.
Department of Internal Medicine, Centre Hospitalier Intercommunal de Créteil, Créteil, France.

E Gabison (E)

Fondation Ophtalmologique Adolphe de Rothschild, Paris, France.

E J Phillips (EJ)

Institute for Immunology and Infectious Diseases, Murdoch University, Murdoch, WA, Australia.
Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.

F Lewis (F)

St John's Institute of Dermatology, Guy's and St Thomas' Hospital, London, UK.

C Salavastru (C)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Department of Paediatric Dermatology, Colentina Clinical Hospital, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.

B Horvath (B)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Department of Dermatology, University Medical Center Groningen, University of Groningen, Hanzeplein 1, 9700 RB, Groningen, The Netherlands.

J Dart (J)

Moorfields Eye Hospital NHS Foundation Trust, The UCL Institute of Ophthalmology, London, UK.

J Setterfield (J)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Department of Oral Medicine, Guy's and St Thomas' NHS Foundation Trust, London, UK.

J Newman (J)

Department of Dermatology, King's College Hospital NHS Foundation Trust, London, UK.

J T Schulz (JT)

Division of Burns, Massachusetts General Hospital, Boston, 02114, USA.

A Delcampe (A)

Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions TOXIBUL, Créteil, France.
Department of Ophthalmology, CHU Charles-Nicolle, Rouen, France.
Fondation Ophtalmologique Adolphe de Rothschild, Paris, France.
Department of Ophthalmology, CHU Bichat-Claude Bernard, Paris, France.

K Brockow (K)

Department of Dermatology and Allergy Biederstein, School of Medicine, Technical University of Munich, Munich, Germany.

L Seminario-Vidal (L)

Department of Dermatology and Cutaneous Surgery, University of South Florida, Tampa, FL, USA.

L Jörg (L)

Department of Dermatology, University Hospital Zurich, Zurich, Switzerland.
Division of Allergology and Clinical Immunology, Department of Pneumology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.

M P Watson (MP)

Cornea and External Eye Disease Service, Moorfields Eye Hospital, London, UK.

M Gonçalo (M)

Department of Dermatology, Coimbra University Hospital Center, Faculty of Medicine, University of Coimbra, Coimbra, Portugal.

M Lucas (M)

Medical School, University of Western Australia, Perth, WA, 6009, Australia.
Department of Immunology, Sir Charles Gairdner Hospital, Pathwest Laboratory Medicine, Perth, WA, 6009, Australia.

M Torres (M)

Allergy Unit, IBIMA-Regional University Hospital of Malaga-UMA, Málaga, Spain.

M H Noe (MH)

Department of Dermatology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

N Hama (N)

Division of Dermatology, Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan.

N H Shear (NH)

Department of Dermatology, University of Toronto, Toronto, ON, Canada.
Sunnybrook Health Sciences Centre, Toronto, ON, Canada.

P O'Reilly (P)

Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland.

P Wolkenstein (P)

Department of Dermatology, AP-HP, Henri Mondor Hospital, 1 Rue Gustave Eiffel, 94000, Créteil, France.
ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Reference Center for Toxic Bullous Dermatoses and Severe Drug Reactions TOXIBUL, Créteil, France.

P Romanelli (P)

Dr. Phillip Frost Department of Dermatology and Cutaneous Surgery, University of Miami, Miller School of Medicine, Miami, FL, USA.

R P Dodiuk-Gad (RP)

Dermatology Department, Emek Medical Center, Bruce Rappaport Faculty of Medicine, Technion - Institute of Technology, Haifa, Israel.
Department of Medicine, University of Toronto, Toronto, Canada.

R G Micheletti (RG)

Department of Dermatology and Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.

G S Tiplica (GS)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
2Nd Department of Dermatology, Colentina Clinical Hospital, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania.

R Sheridan (R)

Burn Service, Boston Shriners Hospital for Children, Boston, MA, USA.
Division of Burns, Massachusetts General Hospital, Boston, MA, USA.
Department of Surgery, Harvard Medical School, Boston, MA, USA.

S Rauz (S)

Academic Unit of Ophthalmology, Birmingham and Midland Eye Centre, Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK.

S Ahmad (S)

Moorfields Eye Hospital NHS Foundation Trust, The UCL Institute of Ophthalmology, London, UK.

S L Chua (SL)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Department of Dermatology, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK.

T H Flynn (TH)

Ophthalmology, Bon Secours Hospital, Cork, Ireland.

W Pichler (W)

ADR-AC GmbH, Bern, Switzerland.

S T Le (ST)

Department of Dermatology, UC Davis Medical Center, Sacramento, CA, USA.

E Maverakis (E)

Department of Dermatology, UC Davis Medical Center, Sacramento, CA, USA.

S Walsh (S)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Department of Dermatology, King's College Hospital NHS Foundation Trust, London, UK.

L E French (LE)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Department of Dermatology, University Hospital, Munich University of Ludwig Maximilian, Munich, Germany.
Dr Phillip Frost Department of Dermatology and Cutaneous Surgery, University of Miami Miller School of Medicine, Miami, FL, USA.

M C Brüggen (MC)

ToxiTEN Group, European Reference Network for Rare Skin Diseases, Paris, France.
Faculty of Medicine, University of Zurich, Zurich, Switzerland.
Department of Dermatology, University Hospital Zurich, Zurich, Switzerland.
Christine Kühne-Center for Allergy Research and Education, Davos, Switzerland.

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Classifications MeSH

questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Post-acute phase and sequelae management of...
questionsmedicales.fr › Troubles dus à des produits chimiques › Effets secondaires indésirables des médicaments › Hypersensibilité médicamenteuse › Toxidermies › Syndrome de Stevens-Johnson › Post-acute phase and sequelae management of...
questionsmedicales.fr › Phénomènes psychologiques › Processus mentaux › Pensée (activité mentale) › Prise de décision › Consensus › Post-acute phase and sequelae management of...
questionsmedicales.fr › Système tégumentaire › Peau › Post-acute phase and sequelae management of...
questionsmedicales.fr › États, signes et symptômes pathologiques › Processus pathologiques › Caractéristiques de la maladie › Évolution de la maladie › Post-acute phase and sequelae management of...