Table 1 Items of the DELPHI-based exercise for the management of sequelae in epidermal necrolysis
Disagreement index (DI)* | Median | |
|---|---|---|
Items the panel agreed were ‘appropriate’ | ||
General recommendations | ||
A follow-up control SHOULD be performed 1–2 months after discharge from the hospital and regularly thereafter as needed | 0 | 9 |
Professionals involved | ||
Patients SHOULD be managed by a multidisciplinary team | 0 | 9 |
The DERMATOLOGIST SHOULD lead in the management of follow-up | 0.531 | 8 |
An OPHTHALMOLOGIST SHOULD be involved in case of ocular involvement | 0 | 9 |
Support by a PSYCHIATRIST and/or PSYCHOLOGIST SHOULD be offered | 0.132 | 9 |
A DENTIST and/or a STOMATOLOGIST SHOULD be involved in case of chronic oral mucosal involvement | 0.132 | 9 |
An ENT specialist SHOULD be involved after discharge if there was nasopharyngeal and/or laryngeal involvement in the acute phase | 0.132 | 9 |
A UROLOGIST SHOULD be involved in cases of severe genital involvement, where a risk of urethral synechiae/strictures exists | 0 | 9 |
A GYNECOLOGIST SHOULD be involved in case of severe genital involvement, where a risk of vaginal synechiae/strictures exists | 0 | 9 |
A PULMONOLOGIST SHOULD be involved after discharge if there was pulmonary involvement in the acute phase | 0.132 | 9 |
A SOCIAL WORKER SHOULD be involved if needed | 0 | 9 |
A DIETICIAN SHOULD be involved if needed | 0.292 | 9 |
Skin | ||
Patients SHOULD practise careful sun protection post-discharge | 0 | 9 |
Patients SHOULD apply emollients daily | 0.262 | 9 |
Laser treatment MAY be considered for hypertrophic scars | 0.374 | 7 |
Residual skin pain SHOULD be further investigated | 0.292 | 8 |
A NEUROLOGIST or a PAIN SPECIALIST SHOULD be involved in patients with chronic skin pain | 0.132 | 9 |
Oral mucosa and teeth | ||
Patients SHOULD receive specific instructions for dental health | 0.262 | 9 |
Patients who had oral mucosa involvement SHOULD have regular dental check-ups | 0.132 | 9 |
Specific therapy SHOULD be implemented in patients with xerostomia | 0.019 | 9 |
Saliva substitutes SHOULD be used in patients with xerostomia | 0.132 | 9 |
Topical sialagogues MAY be considered in patients with xerostomia | 0.292 | 8 |
Eyes | ||
Patients SHOULD undergo a complete ophthalmological examination as often as needed | 0 | 9 |
An OPHTHALMOLOGIST SHOULD guide the medical treatment of ocular symptoms | 0 | 9 |
A combination of artificial tears without preservatives and topical vitamin A SHOULD be used in patients with xerophthalmia | 0.319 | 8 |
The use of topical cyclosporine or other immunosuppressive agent MAY be proposed in patients with severe xerophthalmia | 0.374 | 7 |
The use of scleral lenses SHOULD be considered in patients with severe xerophthalmia and/or scarring | 0.292 | 8 |
Surgical ocular surface reconstruction SHOULD be considered as a last resort in patients with extensive scarring | 0.724 | 7 |
Genital area | ||
Sequelae such as vulvodynia, vulvar and vaginal synechiae SHOULD be assessed after epithelialization | 0.018 | 9 |
Topical corticosteroids SHOULD be considered in patients with vulvar and/or vaginal synechiae to reduce extensive scarring | 0.292 | 8 |
Surgical correction SHOULD be considered in cases of extensive vulvar and/or vaginal scarring | 0.132 | 9 |
Emollients SHOULD be used to avoid vulvar and vaginal dryness | 0.132 | 9 |
Mental health | ||
Every follow-up control SHOULD include a screening for psychological well-being | 0.132 | 9 |
This screening SHOULD include questions on the quality of sleep, mood status, anxiety, nightmares, and symptoms of depression | 0 | 9 |
A standardized tool such as hospital anxiety and depression score (HADS) MAY be helpful in the screening for psychological well-being | 0.132 | 9 |
Psychological support SHOULD be actively offered to patients with chronic disabling sequelae | 0 | 9 |
A psychological and/or psychiatric follow-up CAN help to reduce issues like post-traumatic stress disorder | 0 | 9 |
Iatrogenic psychiatric symptoms SHOULD be excluded | 0.292 | 8 |
Psychotropic drugs MAY be considered according to the psychiatrist’s evaluation | 0.292 | 9 |
Allergy workup | ||
A preliminary allergy card prohibiting the use of ALL suspect drugs MUST be given to the patient upon release from the hospital | 0 | 9 |
The patient MUST be clearly informed during the hospital stay about the suspect drug(s), their avoidance and cross-reactivity | 0 | 9 |
The patient’s companion/family MUST be clearly informed during the hospital stay about the suspect drug(s), their avoidance and cross-reactivity | 0 | 9 |
Prick tests SHOULD NOT be routinely performed | 0.132 | 9 |
Intradermal tests SHOULD NOT be routinely performed | 0.292 | 9 |
If available, a lymphocytic transformation test (LTT) CAN be useful in the diagnostic work-up | 0.492 | 8 |
If available, an Elispot test CAN be useful in the diagnostic work-up | 0.748 | 7 |
A drug CANNOT be excluded as culprit agent solely based on negative results of any of the allergological tests | 0 | 9 |
A definitive allergy card MUST be given to the patient after the allergy work-up | 0 | 9 |
The patient MUST be clearly informed about the drug(s) on the allergy card, their avoidance and cross-reactivity after the allergy work-up | 0 | 9 |
The general practitioner and all physicians involved in the management of the patient MUST be informed about the drug(s) on the allergy card, their avoidance and cross-reactivity after the allergy work-up | 0 | 9 |
Items the panel agreed were ‘uncertain’ | ||
Eyes | ||
Corneal transplantation SHOULD NOT be recommended due to the risk of clinical exacerbation | 0.652 | 5 |
Mental health | ||
Additional measures such as hypnosis MAY help reducing symptoms of anxiety or depression | 0.652 | 5 |
Allergy workup | ||
Allergological testing SHOULD be performed at least 6–8 weeks after complete re-epithelization | 0.652 | 6 |
Patch-tests SHOULD be performed for the diagnostic work-up | 0.519 | 5 |
Items the panel agreed were ‘inappropriate’ | ||
None | ||
Items the panel disagreed | ||
None | ||