Approach to Mycosis Fungoides in children: Consensus-based recommendations

Alex Zvulunov; Holly Neale; Jonah Stern; Pasqualina Santaguida; Amy Buros Stein; Mark Koh; Lawrence F. Eichenfield; Joan Guitart; Matthias Goebeler; Julia Scarisbrick; Rein Willemze; Carrie C. Coughlin; Renu George; Valeria Brazzelli; Márta Marschalkó; Irena Belousova; Christiane Querfeld; Martine Bagot; Jacek C. Szepietowski; Evangelina Papadavid; Pietro Quaglino; Peter Hoeger; Pablo L. Ortiz-Romero; Vasiliki Nikolaou; Reinhard Dummer; Phyu P. Aung; Leslie Lawley; Kimberly D. Morel; Bo Ngan; Mary Wain; Ana Gameiro; Rosa María Lacy-Niebla; Elena Pope

doi:10.1016/j.jaad.2024.07.1501

Approach to Mycosis Fungoides in children: Consensus-based recommendations

Alex Zvulunov^*, Holly Neale, Jonah Stern, Pasqualina Santaguida, Amy Buros Stein, Mark Koh, Lawrence F. Eichenfield, Joan Guitart, Matthias Goebeler, Julia Scarisbrick, Rein Willemze, Carrie C. Coughlin, Renu George, Valeria Brazzelli, Márta Marschalkó, Irena Belousova, Christiane Querfeld, Martine Bagot, Jacek C. Szepietowski, Evangelina PapadavidPietro Quaglino, Peter Hoeger, Pablo L. Ortiz-Romero, Vasiliki Nikolaou, Reinhard Dummer, Phyu P. Aung, Leslie Lawley, Kimberly D. Morel, Bo Ngan, Mary Wain, Ana Gameiro, Rosa María Lacy-Niebla, Elena Pope

^*Corresponding author for this work

Dermatology

Research output: Contribution to journal › Article › peer-review

Abstract

Background: Pediatric Mycosis fungoides (MF) management extrapolates from adult guidelines, despite differing clinical aspects. Recommendations are essential to address unique challenges in this distinct patient group. Objective: This project aims to derive consensus recommendations for pediatric MF management. Methods: Experts from pediatric dermatology, general dermatology, dermatopathology, and pediatric hematology-oncology (N = 83) were invited to contribute to consensus recommendations. The process involved 3 electronic Delphi rounds, concluding with a final consensus meeting using a modified Nominal Group Technique for unresolved items. Results: Consensus included more clinical severity measures than tumor-node-metastasis-blood staging: pruritus, functional or esthetic impairment (eg, palms, soles, genitalia), quality of life impact, and psychological aspects (eg, embarrassment, anxiety, depression), plus parental anxiety. Ten recommendations were made for managing early and advanced pediatric MF. Disagreement emerged in choosing therapies beyond stage I of the disease. Discussion: This multinational initiative aimed to standardize optimal pediatric MF management and successfully generated consensus recommendations. Additional work is needed for structured, prospective protocols in advanced-stage pediatric MF. Limitations: Lack of pediatric hematologists-oncologists and patients' representatives. Conclusion: Documentation of extended clinical severity and outcome measures is recommended. Addressing the need for structured protocols in advanced-stage pediatric MF and implementing systematic, prospective data collection is crucial.

Original language	English (US)
Pages (from-to)	1078-1085
Number of pages	8
Journal	Journal of the American Academy of Dermatology
Volume	91
Issue number	6
DOIs	https://doi.org/10.1016/j.jaad.2024.07.1501
State	Published - Dec 2024

Funding

Funding sources: This work is supported by the Pediatric Dermatology Research Alliance (PeDRA) 2020 Consensus Grant.

Keywords

consensus
mycosis fungoides
pediatric
severity and outcome measures

ASJC Scopus subject areas

Dermatology

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10.1016/j.jaad.2024.07.1501

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Zvulunov, A., Neale, H., Stern, J., Santaguida, P., Stein, A. B., Koh, M., Eichenfield, L. F., Guitart, J., Goebeler, M., Scarisbrick, J., Willemze, R., Coughlin, C. C., George, R., Brazzelli, V., Marschalkó, M., Belousova, I., Querfeld, C., Bagot, M., Szepietowski, J. C., ... Pope, E. (2024). Approach to Mycosis Fungoides in children: Consensus-based recommendations. Journal of the American Academy of Dermatology, 91(6), 1078-1085. https://doi.org/10.1016/j.jaad.2024.07.1501

@article{d98398e7fd524e5abf1fd99029ce8383,

title = "Approach to Mycosis Fungoides in children: Consensus-based recommendations",

abstract = "Background: Pediatric Mycosis fungoides (MF) management extrapolates from adult guidelines, despite differing clinical aspects. Recommendations are essential to address unique challenges in this distinct patient group. Objective: This project aims to derive consensus recommendations for pediatric MF management. Methods: Experts from pediatric dermatology, general dermatology, dermatopathology, and pediatric hematology-oncology (N = 83) were invited to contribute to consensus recommendations. The process involved 3 electronic Delphi rounds, concluding with a final consensus meeting using a modified Nominal Group Technique for unresolved items. Results: Consensus included more clinical severity measures than tumor-node-metastasis-blood staging: pruritus, functional or esthetic impairment (eg, palms, soles, genitalia), quality of life impact, and psychological aspects (eg, embarrassment, anxiety, depression), plus parental anxiety. Ten recommendations were made for managing early and advanced pediatric MF. Disagreement emerged in choosing therapies beyond stage I of the disease. Discussion: This multinational initiative aimed to standardize optimal pediatric MF management and successfully generated consensus recommendations. Additional work is needed for structured, prospective protocols in advanced-stage pediatric MF. Limitations: Lack of pediatric hematologists-oncologists and patients' representatives. Conclusion: Documentation of extended clinical severity and outcome measures is recommended. Addressing the need for structured protocols in advanced-stage pediatric MF and implementing systematic, prospective data collection is crucial.",

keywords = "consensus, mycosis fungoides, pediatric, severity and outcome measures",

author = "Alex Zvulunov and Holly Neale and Jonah Stern and Pasqualina Santaguida and Stein, {Amy Buros} and Mark Koh and Eichenfield, {Lawrence F.} and Joan Guitart and Matthias Goebeler and Julia Scarisbrick and Rein Willemze and Coughlin, {Carrie C.} and Renu George and Valeria Brazzelli and M{\'a}rta Marschalk{\'o} and Irena Belousova and Christiane Querfeld and Martine Bagot and Szepietowski, {Jacek C.} and Evangelina Papadavid and Pietro Quaglino and Peter Hoeger and Ortiz-Romero, {Pablo L.} and Vasiliki Nikolaou and Reinhard Dummer and Aung, {Phyu P.} and Leslie Lawley and Morel, {Kimberly D.} and Bo Ngan and Mary Wain and Ana Gameiro and Lacy-Niebla, {Rosa Mar{\'i}a} and Elena Pope",

note = "Publisher Copyright: {\textcopyright} 2024 American Academy of Dermatology, Inc.",

year = "2024",

month = dec,

doi = "10.1016/j.jaad.2024.07.1501",

language = "English (US)",

volume = "91",

pages = "1078--1085",

journal = "Journal of the American Academy of Dermatology",

issn = "0190-9622",

publisher = "Elsevier Inc.",

number = "6",

}

Zvulunov, A, Neale, H, Stern, J, Santaguida, P, Stein, AB, Koh, M, Eichenfield, LF, Guitart, J, Goebeler, M, Scarisbrick, J, Willemze, R, Coughlin, CC, George, R, Brazzelli, V, Marschalkó, M, Belousova, I, Querfeld, C, Bagot, M, Szepietowski, JC, Papadavid, E, Quaglino, P, Hoeger, P, Ortiz-Romero, PL, Nikolaou, V, Dummer, R, Aung, PP, Lawley, L, Morel, KD, Ngan, B, Wain, M, Gameiro, A, Lacy-Niebla, RM & Pope, E 2024, 'Approach to Mycosis Fungoides in children: Consensus-based recommendations', Journal of the American Academy of Dermatology, vol. 91, no. 6, pp. 1078-1085. https://doi.org/10.1016/j.jaad.2024.07.1501

TY - JOUR

T1 - Approach to Mycosis Fungoides in children

T2 - Consensus-based recommendations

AU - Zvulunov, Alex

AU - Neale, Holly

AU - Stern, Jonah

AU - Santaguida, Pasqualina

AU - Stein, Amy Buros

AU - Koh, Mark

AU - Eichenfield, Lawrence F.

AU - Guitart, Joan

AU - Goebeler, Matthias

AU - Scarisbrick, Julia

AU - Willemze, Rein

AU - Coughlin, Carrie C.

AU - George, Renu

AU - Brazzelli, Valeria

AU - Marschalkó, Márta

AU - Belousova, Irena

AU - Querfeld, Christiane

AU - Bagot, Martine

AU - Szepietowski, Jacek C.

AU - Papadavid, Evangelina

AU - Quaglino, Pietro

AU - Hoeger, Peter

AU - Ortiz-Romero, Pablo L.

AU - Nikolaou, Vasiliki

AU - Dummer, Reinhard

AU - Aung, Phyu P.

AU - Lawley, Leslie

AU - Morel, Kimberly D.

AU - Ngan, Bo

AU - Wain, Mary

AU - Gameiro, Ana

AU - Lacy-Niebla, Rosa María

AU - Pope, Elena

PY - 2024/12

Y1 - 2024/12

N2 - Background: Pediatric Mycosis fungoides (MF) management extrapolates from adult guidelines, despite differing clinical aspects. Recommendations are essential to address unique challenges in this distinct patient group. Objective: This project aims to derive consensus recommendations for pediatric MF management. Methods: Experts from pediatric dermatology, general dermatology, dermatopathology, and pediatric hematology-oncology (N = 83) were invited to contribute to consensus recommendations. The process involved 3 electronic Delphi rounds, concluding with a final consensus meeting using a modified Nominal Group Technique for unresolved items. Results: Consensus included more clinical severity measures than tumor-node-metastasis-blood staging: pruritus, functional or esthetic impairment (eg, palms, soles, genitalia), quality of life impact, and psychological aspects (eg, embarrassment, anxiety, depression), plus parental anxiety. Ten recommendations were made for managing early and advanced pediatric MF. Disagreement emerged in choosing therapies beyond stage I of the disease. Discussion: This multinational initiative aimed to standardize optimal pediatric MF management and successfully generated consensus recommendations. Additional work is needed for structured, prospective protocols in advanced-stage pediatric MF. Limitations: Lack of pediatric hematologists-oncologists and patients' representatives. Conclusion: Documentation of extended clinical severity and outcome measures is recommended. Addressing the need for structured protocols in advanced-stage pediatric MF and implementing systematic, prospective data collection is crucial.

AB - Background: Pediatric Mycosis fungoides (MF) management extrapolates from adult guidelines, despite differing clinical aspects. Recommendations are essential to address unique challenges in this distinct patient group. Objective: This project aims to derive consensus recommendations for pediatric MF management. Methods: Experts from pediatric dermatology, general dermatology, dermatopathology, and pediatric hematology-oncology (N = 83) were invited to contribute to consensus recommendations. The process involved 3 electronic Delphi rounds, concluding with a final consensus meeting using a modified Nominal Group Technique for unresolved items. Results: Consensus included more clinical severity measures than tumor-node-metastasis-blood staging: pruritus, functional or esthetic impairment (eg, palms, soles, genitalia), quality of life impact, and psychological aspects (eg, embarrassment, anxiety, depression), plus parental anxiety. Ten recommendations were made for managing early and advanced pediatric MF. Disagreement emerged in choosing therapies beyond stage I of the disease. Discussion: This multinational initiative aimed to standardize optimal pediatric MF management and successfully generated consensus recommendations. Additional work is needed for structured, prospective protocols in advanced-stage pediatric MF. Limitations: Lack of pediatric hematologists-oncologists and patients' representatives. Conclusion: Documentation of extended clinical severity and outcome measures is recommended. Addressing the need for structured protocols in advanced-stage pediatric MF and implementing systematic, prospective data collection is crucial.

KW - consensus

KW - mycosis fungoides

KW - pediatric

KW - severity and outcome measures

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U2 - 10.1016/j.jaad.2024.07.1501

DO - 10.1016/j.jaad.2024.07.1501

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AN - SCOPUS:85203801097

SN - 0190-9622

VL - 91

SP - 1078

EP - 1085

JO - Journal of the American Academy of Dermatology

JF - Journal of the American Academy of Dermatology

IS - 6

ER -

Approach to Mycosis Fungoides in children: Consensus-based recommendations

Abstract

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Keywords

ASJC Scopus subject areas

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