Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus
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..
| Medienart: |
E-Artikel |
|---|
| Erscheinungsjahr: |
2023 |
|---|---|
| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:18 |
|---|---|
| Enthalten in: |
Orphanet journal of rare diseases - 18(2023), 1 vom: 22. Feb. |
| Sprache: |
Englisch |
|---|
| Beteiligte Personen: |
Ingen-Housz-Oro, S. [VerfasserIn] |
|---|
| Links: |
Volltext [kostenfrei] |
|---|
| Themen: |
Consensus |
|---|
| Anmerkungen: |
© The Author(s) 2023 |
|---|
| doi: |
10.1186/s13023-023-02631-7 |
|---|
| funding: |
|
|---|---|
| Förderinstitution / Projekttitel: |
|
| PPN (Katalog-ID): |
OLC2134104171 |
|---|
| LEADER | 01000caa a22002652 4500 | ||
|---|---|---|---|
| 001 | OLC2134104171 | ||
| 003 | DE-627 | ||
| 005 | 20240323223340.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 230506s2023 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1186/s13023-023-02631-7 |2 doi | |
| 035 | |a (DE-627)OLC2134104171 | ||
| 035 | |a (DE-He213)s13023-023-02631-7-e | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rakwb | ||
| 041 | |a eng | ||
| 082 | 0 | 4 | |a 610 |q VZ |
| 100 | 1 | |a Ingen-Housz-Oro, S. |e verfasserin |0 (orcid)0000-0002-5383-7096 |4 aut | |
| 245 | 1 | 0 | |a Post-acute phase and sequelae management of epidermal necrolysis: an international, multidisciplinary DELPHI-based consensus |
| 264 | 1 | |c 2023 | |
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a Computermedien |b c |2 rdamedia | ||
| 338 | |a Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a © The Author(s) 2023 | ||
| 520 | |a 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. | ||
| 650 | 4 | |a Epidermal necrolysis | |
| 650 | 4 | |a Stevens-Johnson syndrome | |
| 650 | 4 | |a Toxic epidermal necrolysis | |
| 650 | 4 | |a Sequelae | |
| 650 | 4 | |a Quality of life | |
| 650 | 4 | |a Delphi | |
| 650 | 4 | |a Consensus | |
| 700 | 1 | |a Schmidt, V. |4 aut | |
| 700 | 1 | |a Ameri, M. M. |4 aut | |
| 700 | 1 | |a Abe, R. |4 aut | |
| 700 | 1 | |a Brassard, A. |4 aut | |
| 700 | 1 | |a Mostaghimi, A. |4 aut | |
| 700 | 1 | |a Paller, A. S. |4 aut | |
| 700 | 1 | |a Romano, A. |4 aut | |
| 700 | 1 | |a Didona, B. |4 aut | |
| 700 | 1 | |a Kaffenberger, B. H. |4 aut | |
| 700 | 1 | |a Ben Said, B. |4 aut | |
| 700 | 1 | |a Thong, B. Y. H. |4 aut | |
| 700 | 1 | |a Ramsay, B. |4 aut | |
| 700 | 1 | |a Brezinova, E. |4 aut | |
| 700 | 1 | |a Milpied, B. |4 aut | |
| 700 | 1 | |a Mortz, C. G. |4 aut | |
| 700 | 1 | |a Chu, C. Y. |4 aut | |
| 700 | 1 | |a Sotozono, C. |4 aut | |
| 700 | 1 | |a Gueudry, J. |4 aut | |
| 700 | 1 | |a Fortune, D. G. |4 aut | |
| 700 | 1 | |a Dridi, S. M. |4 aut | |
| 700 | 1 | |a Tartar, D. |4 aut | |
| 700 | 1 | |a Do-Pham, G. |4 aut | |
| 700 | 1 | |a Gabison, E. |4 aut | |
| 700 | 1 | |a Phillips, E. J. |4 aut | |
| 700 | 1 | |a Lewis, F. |4 aut | |
| 700 | 1 | |a Salavastru, C. |4 aut | |
| 700 | 1 | |a Horvath, B. |4 aut | |
| 700 | 1 | |a Dart, J. |4 aut | |
| 700 | 1 | |a Setterfield, J. |4 aut | |
| 700 | 1 | |a Newman, J. |4 aut | |
| 700 | 1 | |a Schulz, J. T. |4 aut | |
| 700 | 1 | |a Delcampe, A. |4 aut | |
| 700 | 1 | |a Brockow, K. |4 aut | |
| 700 | 1 | |a Seminario-Vidal, L. |4 aut | |
| 700 | 1 | |a Jörg, L. |4 aut | |
| 700 | 1 | |a Watson, M. P. |4 aut | |
| 700 | 1 | |a Gonçalo, M. |4 aut | |
| 700 | 1 | |a Lucas, M. |4 aut | |
| 700 | 1 | |a Torres, M. |4 aut | |
| 700 | 1 | |a Noe, M. H. |4 aut | |
| 700 | 1 | |a Hama, N. |4 aut | |
| 700 | 1 | |a Shear, N. H. |4 aut | |
| 700 | 1 | |a O’Reilly, P. |4 aut | |
| 700 | 1 | |a Wolkenstein, P. |4 aut | |
| 700 | 1 | |a Romanelli, P. |4 aut | |
| 700 | 1 | |a Dodiuk-Gad, R. P. |4 aut | |
| 700 | 1 | |a Micheletti, R. G. |4 aut | |
| 700 | 1 | |a Tiplica, G. S. |4 aut | |
| 700 | 1 | |a Sheridan, R. |4 aut | |
| 700 | 1 | |a Rauz, S. |4 aut | |
| 700 | 1 | |a Ahmad, S. |4 aut | |
| 700 | 1 | |a Chua, S. L. |4 aut | |
| 700 | 1 | |a Flynn, T. H. |4 aut | |
| 700 | 1 | |a Pichler, W. |4 aut | |
| 700 | 1 | |a Le, S. T. |4 aut | |
| 700 | 1 | |a Maverakis, E. |4 aut | |
| 700 | 1 | |a Walsh, S. |4 aut | |
| 700 | 1 | |a French, L. E. |4 aut | |
| 700 | 1 | |a Brüggen, M. C. |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t Orphanet journal of rare diseases |d BioMed Central, 2006 |g 18(2023), 1 vom: 22. Feb. |h Online-Ressource |w (DE-627)50900637X |w (DE-600)2225857-7 |w (DE-576)260614424 |x 1750-1172 |7 nnns |
| 773 | 1 | 8 | |g volume:18 |g year:2023 |g number:1 |g day:22 |g month:02 |
| 856 | 4 | 0 | |u https://dx.doi.org/10.1186/s13023-023-02631-7 |z kostenfrei |3 Volltext |
| 912 | |a GBV_USEFLAG_A | ||
| 912 | |a SYSFLAG_A | ||
| 912 | |a GBV_OLC | ||
| 912 | |a SSG-OLC-PHA | ||
| 912 | |a GBV_ILN_11 | ||
| 912 | |a GBV_ILN_20 | ||
| 912 | |a GBV_ILN_22 | ||
| 912 | |a GBV_ILN_23 | ||
| 912 | |a GBV_ILN_24 | ||
| 912 | |a GBV_ILN_39 | ||
| 912 | |a GBV_ILN_40 | ||
| 912 | |a GBV_ILN_60 | ||
| 912 | |a GBV_ILN_62 | ||
| 912 | |a GBV_ILN_63 | ||
| 912 | |a GBV_ILN_65 | ||
| 912 | |a GBV_ILN_69 | ||
| 912 | |a GBV_ILN_73 | ||
| 912 | |a GBV_ILN_74 | ||
| 912 | |a GBV_ILN_95 | ||
| 912 | |a GBV_ILN_105 | ||
| 912 | |a GBV_ILN_110 | ||
| 912 | |a GBV_ILN_151 | ||
| 912 | |a GBV_ILN_161 | ||
| 912 | |a GBV_ILN_170 | ||
| 912 | |a GBV_ILN_206 | ||
| 912 | |a GBV_ILN_213 | ||
| 912 | |a GBV_ILN_230 | ||
| 912 | |a GBV_ILN_285 | ||
| 912 | |a GBV_ILN_293 | ||
| 912 | |a GBV_ILN_602 | ||
| 912 | |a GBV_ILN_2003 | ||
| 912 | |a GBV_ILN_2005 | ||
| 912 | |a GBV_ILN_2009 | ||
| 912 | |a GBV_ILN_2011 | ||
| 912 | |a GBV_ILN_2014 | ||
| 912 | |a GBV_ILN_2055 | ||
| 912 | |a GBV_ILN_2111 | ||
| 912 | |a GBV_ILN_2446 | ||
| 912 | |a GBV_ILN_4012 | ||
| 912 | |a GBV_ILN_4037 | ||
| 912 | |a GBV_ILN_4112 | ||
| 912 | |a GBV_ILN_4125 | ||
| 912 | |a GBV_ILN_4126 | ||
| 912 | |a GBV_ILN_4249 | ||
| 912 | |a GBV_ILN_4305 | ||
| 912 | |a GBV_ILN_4306 | ||
| 912 | |a GBV_ILN_4307 | ||
| 912 | |a GBV_ILN_4313 | ||
| 912 | |a GBV_ILN_4322 | ||
| 912 | |a GBV_ILN_4323 | ||
| 912 | |a GBV_ILN_4324 | ||
| 912 | |a GBV_ILN_4325 | ||
| 912 | |a GBV_ILN_4338 | ||
| 912 | |a GBV_ILN_4367 | ||
| 912 | |a GBV_ILN_4700 | ||
| 951 | |a AR | ||
| 952 | |d 18 |j 2023 |e 1 |b 22 |c 02 | ||