Development of consensus treatment plans for juvenile localized scleroderma: A roadmap toward comparative effectiveness studies in juvenile localized scleroderma

Suzanne C. Li, Kathryn S. Torok, Elena Pope, Fatma Dedeoglu, Sandy Hong, Heidi T. Jacobe, C. Egla Rabinovich, Ronald M. Laxer, Gloria C. Higgins, Polly J. Ferguson, Andrew Lasky, Kevin Baszis, Mara Becker, Sarah Campillo, Victoria Cartwright, Michael Cidon, Christi J. Inman, Rita Jerath, Kathleen M. O'Neil, Sheetal VoraAndrew Zeft, Carol A. Wallace, Norman T. Ilowite, Robert C. Fuhlbrigge

Research output: Contribution to journalArticle

99 Citations (Scopus)

Abstract

Objective Juvenile localized scleroderma (LS) is a chronic inflammatory skin disorder associated with substantial morbidity and disability. Although a wide range of therapeutic strategies has been reported in the literature, a lack of agreement on treatment specifics and accepted methods for clinical assessment has made it difficult to compare approaches and identify optimal therapy. Our objective was to develop standardized treatment plans, clinical assessments, and response criteria for active, moderate to high severity juvenile LS. Methods A core group of pediatric rheumatologists, dermatologists, and a lay advisor was engaged by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to develop standardized treatment plans and assessment parameters for juvenile LS using consensus methods/nominal group techniques. Recommendations were validated in 2 face-to-face conferences with a larger group of practitioners with expertise in juvenile LS and with the full membership of CARRA, which encompasses the majority of pediatric rheumatologists in the US and Canada. Results Consensus was achieved on standardized treatment plans that reflect the prevailing treatment practices of CARRA members. Standardized clinical assessment methods and provisional treatment response criteria were also developed. Greater than 90% of pediatric rheumatologists responding to a survey (66% of CARRA membership) affirmed the final recommendations and agreed to utilize these consensus plans to treat patients with juvenile LS. Conclusion Using consensus methodology, we have developed standardized treatment plans and assessment methods for juvenile LS. The high level of support among pediatric rheumatologists will support future comparative effectiveness studies and enable the development of evidence-based guidelines for the treatment of juvenile LS.

Original languageEnglish (US)
Pages (from-to)1175-1185
Number of pages11
JournalArthritis Care and Research
Volume64
Issue number8
DOIs
StatePublished - Aug 2012

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Localized Scleroderma
Consensus
Rheumatology
Arthritis
Pediatrics
Therapeutics
Research
Juvenile-onset scleroderma
Canada
Guidelines

ASJC Scopus subject areas

  • Rheumatology

Cite this

Development of consensus treatment plans for juvenile localized scleroderma : A roadmap toward comparative effectiveness studies in juvenile localized scleroderma. / Li, Suzanne C.; Torok, Kathryn S.; Pope, Elena; Dedeoglu, Fatma; Hong, Sandy; Jacobe, Heidi T.; Rabinovich, C. Egla; Laxer, Ronald M.; Higgins, Gloria C.; Ferguson, Polly J.; Lasky, Andrew; Baszis, Kevin; Becker, Mara; Campillo, Sarah; Cartwright, Victoria; Cidon, Michael; Inman, Christi J.; Jerath, Rita; O'Neil, Kathleen M.; Vora, Sheetal; Zeft, Andrew; Wallace, Carol A.; Ilowite, Norman T.; Fuhlbrigge, Robert C.

In: Arthritis Care and Research, Vol. 64, No. 8, 08.2012, p. 1175-1185.

Research output: Contribution to journalArticle

Li, SC, Torok, KS, Pope, E, Dedeoglu, F, Hong, S, Jacobe, HT, Rabinovich, CE, Laxer, RM, Higgins, GC, Ferguson, PJ, Lasky, A, Baszis, K, Becker, M, Campillo, S, Cartwright, V, Cidon, M, Inman, CJ, Jerath, R, O'Neil, KM, Vora, S, Zeft, A, Wallace, CA, Ilowite, NT & Fuhlbrigge, RC 2012, 'Development of consensus treatment plans for juvenile localized scleroderma: A roadmap toward comparative effectiveness studies in juvenile localized scleroderma', Arthritis Care and Research, vol. 64, no. 8, pp. 1175-1185. https://doi.org/10.1002/acr.21687
Li, Suzanne C. ; Torok, Kathryn S. ; Pope, Elena ; Dedeoglu, Fatma ; Hong, Sandy ; Jacobe, Heidi T. ; Rabinovich, C. Egla ; Laxer, Ronald M. ; Higgins, Gloria C. ; Ferguson, Polly J. ; Lasky, Andrew ; Baszis, Kevin ; Becker, Mara ; Campillo, Sarah ; Cartwright, Victoria ; Cidon, Michael ; Inman, Christi J. ; Jerath, Rita ; O'Neil, Kathleen M. ; Vora, Sheetal ; Zeft, Andrew ; Wallace, Carol A. ; Ilowite, Norman T. ; Fuhlbrigge, Robert C. / Development of consensus treatment plans for juvenile localized scleroderma : A roadmap toward comparative effectiveness studies in juvenile localized scleroderma. In: Arthritis Care and Research. 2012 ; Vol. 64, No. 8. pp. 1175-1185.
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abstract = "Objective Juvenile localized scleroderma (LS) is a chronic inflammatory skin disorder associated with substantial morbidity and disability. Although a wide range of therapeutic strategies has been reported in the literature, a lack of agreement on treatment specifics and accepted methods for clinical assessment has made it difficult to compare approaches and identify optimal therapy. Our objective was to develop standardized treatment plans, clinical assessments, and response criteria for active, moderate to high severity juvenile LS. Methods A core group of pediatric rheumatologists, dermatologists, and a lay advisor was engaged by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to develop standardized treatment plans and assessment parameters for juvenile LS using consensus methods/nominal group techniques. Recommendations were validated in 2 face-to-face conferences with a larger group of practitioners with expertise in juvenile LS and with the full membership of CARRA, which encompasses the majority of pediatric rheumatologists in the US and Canada. Results Consensus was achieved on standardized treatment plans that reflect the prevailing treatment practices of CARRA members. Standardized clinical assessment methods and provisional treatment response criteria were also developed. Greater than 90{\%} of pediatric rheumatologists responding to a survey (66{\%} of CARRA membership) affirmed the final recommendations and agreed to utilize these consensus plans to treat patients with juvenile LS. Conclusion Using consensus methodology, we have developed standardized treatment plans and assessment methods for juvenile LS. The high level of support among pediatric rheumatologists will support future comparative effectiveness studies and enable the development of evidence-based guidelines for the treatment of juvenile LS.",
author = "Li, {Suzanne C.} and Torok, {Kathryn S.} and Elena Pope and Fatma Dedeoglu and Sandy Hong and Jacobe, {Heidi T.} and Rabinovich, {C. Egla} and Laxer, {Ronald M.} and Higgins, {Gloria C.} and Ferguson, {Polly J.} and Andrew Lasky and Kevin Baszis and Mara Becker and Sarah Campillo and Victoria Cartwright and Michael Cidon and Inman, {Christi J.} and Rita Jerath and O'Neil, {Kathleen M.} and Sheetal Vora and Andrew Zeft and Wallace, {Carol A.} and Ilowite, {Norman T.} and Fuhlbrigge, {Robert C.}",
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T1 - Development of consensus treatment plans for juvenile localized scleroderma

T2 - A roadmap toward comparative effectiveness studies in juvenile localized scleroderma

AU - Li, Suzanne C.

AU - Torok, Kathryn S.

AU - Pope, Elena

AU - Dedeoglu, Fatma

AU - Hong, Sandy

AU - Jacobe, Heidi T.

AU - Rabinovich, C. Egla

AU - Laxer, Ronald M.

AU - Higgins, Gloria C.

AU - Ferguson, Polly J.

AU - Lasky, Andrew

AU - Baszis, Kevin

AU - Becker, Mara

AU - Campillo, Sarah

AU - Cartwright, Victoria

AU - Cidon, Michael

AU - Inman, Christi J.

AU - Jerath, Rita

AU - O'Neil, Kathleen M.

AU - Vora, Sheetal

AU - Zeft, Andrew

AU - Wallace, Carol A.

AU - Ilowite, Norman T.

AU - Fuhlbrigge, Robert C.

PY - 2012/8

Y1 - 2012/8

N2 - Objective Juvenile localized scleroderma (LS) is a chronic inflammatory skin disorder associated with substantial morbidity and disability. Although a wide range of therapeutic strategies has been reported in the literature, a lack of agreement on treatment specifics and accepted methods for clinical assessment has made it difficult to compare approaches and identify optimal therapy. Our objective was to develop standardized treatment plans, clinical assessments, and response criteria for active, moderate to high severity juvenile LS. Methods A core group of pediatric rheumatologists, dermatologists, and a lay advisor was engaged by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to develop standardized treatment plans and assessment parameters for juvenile LS using consensus methods/nominal group techniques. Recommendations were validated in 2 face-to-face conferences with a larger group of practitioners with expertise in juvenile LS and with the full membership of CARRA, which encompasses the majority of pediatric rheumatologists in the US and Canada. Results Consensus was achieved on standardized treatment plans that reflect the prevailing treatment practices of CARRA members. Standardized clinical assessment methods and provisional treatment response criteria were also developed. Greater than 90% of pediatric rheumatologists responding to a survey (66% of CARRA membership) affirmed the final recommendations and agreed to utilize these consensus plans to treat patients with juvenile LS. Conclusion Using consensus methodology, we have developed standardized treatment plans and assessment methods for juvenile LS. The high level of support among pediatric rheumatologists will support future comparative effectiveness studies and enable the development of evidence-based guidelines for the treatment of juvenile LS.

AB - Objective Juvenile localized scleroderma (LS) is a chronic inflammatory skin disorder associated with substantial morbidity and disability. Although a wide range of therapeutic strategies has been reported in the literature, a lack of agreement on treatment specifics and accepted methods for clinical assessment has made it difficult to compare approaches and identify optimal therapy. Our objective was to develop standardized treatment plans, clinical assessments, and response criteria for active, moderate to high severity juvenile LS. Methods A core group of pediatric rheumatologists, dermatologists, and a lay advisor was engaged by the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to develop standardized treatment plans and assessment parameters for juvenile LS using consensus methods/nominal group techniques. Recommendations were validated in 2 face-to-face conferences with a larger group of practitioners with expertise in juvenile LS and with the full membership of CARRA, which encompasses the majority of pediatric rheumatologists in the US and Canada. Results Consensus was achieved on standardized treatment plans that reflect the prevailing treatment practices of CARRA members. Standardized clinical assessment methods and provisional treatment response criteria were also developed. Greater than 90% of pediatric rheumatologists responding to a survey (66% of CARRA membership) affirmed the final recommendations and agreed to utilize these consensus plans to treat patients with juvenile LS. Conclusion Using consensus methodology, we have developed standardized treatment plans and assessment methods for juvenile LS. The high level of support among pediatric rheumatologists will support future comparative effectiveness studies and enable the development of evidence-based guidelines for the treatment of juvenile LS.

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