Parameters of care for craniosynostosis

Joseph G McCarthy; Stephen M Warren; Joseph Bernstein; Whitney Burnett; Michael L Cunningham; Jane C Edmond; Alvaro A Figueroa; Kathleen A Kapp-Simon; Brian I Labow; Sally J Peterson-Falzone; Mark R Proctor; Marcie S Rubin; Raymond W Sze; Terrance A Yemen; Craniosynostosis Working Group; Sven Kreiborg

doi:10.1597/11-138

Parameters of care for craniosynostosis

Joseph G McCarthy, Stephen M Warren, Joseph Bernstein, Whitney Burnett, Michael L Cunningham, Jane C Edmond, Alvaro A Figueroa, Kathleen A Kapp-Simon, Brian I Labow, Sally J Peterson-Falzone, Mark R Proctor, Marcie S Rubin, Raymond W Sze, Terrance A Yemen, Craniosynostosis Working Group, Sven Kreiborg

80 Citations (Scopus)

Abstract

Background: A multidisciplinary meeting was held from March 4 to 6, 2010, in Atlanta, Georgia, entitled "Craniosynostosis: Developing Parameters for Diagnosis, Treatment, and Management." The goal of this meeting was to create parameters of care for individuals with craniosynostosis. Methods: Fifty-two conference attendees represented a broad range of expertise, including anesthesiology, craniofacial surgery, dentistry, genetics, hand surgery, neurosurgery, nursing, ophthalmology, oral and maxillofacial surgery, orthodontics, otolaryngology, pediatrics, psychology, public health, radiology, and speech-language pathology. These attendees also represented 16 professional societies and peer-reviewed journals. The current state of knowledge related to each discipline was reviewed. Based on areas of expertise, four breakout groups were created to reach a consensus and draft specialtyspecific parameters of care based on the literature or, in the absence of literature, broad clinical experience. In an iterative manner, the specialty-specific draft recommendations were presented to all conference attendees. Participants discussed the recommendations in multidisciplinary groups to facilitate exchange and consensus across disciplines. After the conference, a pediatric intensivist and social worker reviewed the recommendations. Results: Consensus was reached among the 52 conference attendees and two post hoc reviewers. Longitudinal parameters of care were developed for the diagnosis, treatment, and management of craniosynostosis in each of the 18 specialty areas of care from prenatal evaluation to adulthood. Conclusions: To our knowledge, this is the first multidisciplinary effort to develop parameters of care for craniosynostosis. These parameters were designed to help facilitate the development of educational programs for the patient, families, and health-care professionals; stimulate the creation of a national database and registry to promote research, especially in the area of outcome studies; improve credentialing of interdisciplinary craniofacial clinical teams; and improve the availability of health insurance coverage for all individuals with craniosynostosis.

Original language	English
Journal	The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
Volume	49 Suppl
Pages (from-to)	1S-24S
DOIs	https://doi.org/10.1597/11-138
Publication status	Published - Jan 2012

Keywords

Child
Child, Preschool
Craniosynostoses
Humans
Infant
Infant, Newborn
Practice Guidelines as Topic

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1597/11-138

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McCarthy, J. G., Warren, S. M., Bernstein, J., Burnett, W., Cunningham, M. L., Edmond, J. C., Figueroa, A. A., Kapp-Simon, K. A., Labow, B. I., Peterson-Falzone, S. J., Proctor, M. R., Rubin, M. S., Sze, R. W., Yemen, T. A., Craniosynostosis Working Group, & Kreiborg, S. (2012). Parameters of care for craniosynostosis. The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association, 49 Suppl, 1S-24S. https://doi.org/10.1597/11-138

McCarthy, JG, Warren, SM, Bernstein, J, Burnett, W, Cunningham, ML, Edmond, JC, Figueroa, AA, Kapp-Simon, KA, Labow, BI, Peterson-Falzone, SJ, Proctor, MR, Rubin, MS, Sze, RW, Yemen, TA, Craniosynostosis Working Group & Kreiborg, S 2012, 'Parameters of care for craniosynostosis', The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association, vol. 49 Suppl, pp. 1S-24S. https://doi.org/10.1597/11-138

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abstract = "Background: A multidisciplinary meeting was held from March 4 to 6, 2010, in Atlanta, Georgia, entitled {"}Craniosynostosis: Developing Parameters for Diagnosis, Treatment, and Management.{"} The goal of this meeting was to create parameters of care for individuals with craniosynostosis. Methods: Fifty-two conference attendees represented a broad range of expertise, including anesthesiology, craniofacial surgery, dentistry, genetics, hand surgery, neurosurgery, nursing, ophthalmology, oral and maxillofacial surgery, orthodontics, otolaryngology, pediatrics, psychology, public health, radiology, and speech-language pathology. These attendees also represented 16 professional societies and peer-reviewed journals. The current state of knowledge related to each discipline was reviewed. Based on areas of expertise, four breakout groups were created to reach a consensus and draft specialtyspecific parameters of care based on the literature or, in the absence of literature, broad clinical experience. In an iterative manner, the specialty-specific draft recommendations were presented to all conference attendees. Participants discussed the recommendations in multidisciplinary groups to facilitate exchange and consensus across disciplines. After the conference, a pediatric intensivist and social worker reviewed the recommendations. Results: Consensus was reached among the 52 conference attendees and two post hoc reviewers. Longitudinal parameters of care were developed for the diagnosis, treatment, and management of craniosynostosis in each of the 18 specialty areas of care from prenatal evaluation to adulthood. Conclusions: To our knowledge, this is the first multidisciplinary effort to develop parameters of care for craniosynostosis. These parameters were designed to help facilitate the development of educational programs for the patient, families, and health-care professionals; stimulate the creation of a national database and registry to promote research, especially in the area of outcome studies; improve credentialing of interdisciplinary craniofacial clinical teams; and improve the availability of health insurance coverage for all individuals with craniosynostosis.",

keywords = "Child, Child, Preschool, Craniosynostoses, Humans, Infant, Infant, Newborn, Practice Guidelines as Topic",

author = "McCarthy, {Joseph G} and Warren, {Stephen M} and Joseph Bernstein and Whitney Burnett and Cunningham, {Michael L} and Edmond, {Jane C} and Figueroa, {Alvaro A} and Kapp-Simon, {Kathleen A} and Labow, {Brian I} and Peterson-Falzone, {Sally J} and Proctor, {Mark R} and Rubin, {Marcie S} and Sze, {Raymond W} and Yemen, {Terrance A} and {Craniosynostosis Working Group} and Sven Kreiborg",

year = "2012",

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doi = "10.1597/11-138",

language = "English",

volume = "49 Suppl",

pages = "1S--24S",

journal = "Cleft Palate - Craniofacial Journal",

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AU - McCarthy, Joseph G

AU - Warren, Stephen M

AU - Bernstein, Joseph

AU - Burnett, Whitney

AU - Cunningham, Michael L

AU - Edmond, Jane C

AU - Figueroa, Alvaro A

AU - Kapp-Simon, Kathleen A

AU - Labow, Brian I

AU - Peterson-Falzone, Sally J

AU - Proctor, Mark R

AU - Rubin, Marcie S

AU - Sze, Raymond W

AU - Yemen, Terrance A

AU - Craniosynostosis Working Group

AU - Kreiborg, Sven

PY - 2012/1

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N2 - Background: A multidisciplinary meeting was held from March 4 to 6, 2010, in Atlanta, Georgia, entitled "Craniosynostosis: Developing Parameters for Diagnosis, Treatment, and Management." The goal of this meeting was to create parameters of care for individuals with craniosynostosis. Methods: Fifty-two conference attendees represented a broad range of expertise, including anesthesiology, craniofacial surgery, dentistry, genetics, hand surgery, neurosurgery, nursing, ophthalmology, oral and maxillofacial surgery, orthodontics, otolaryngology, pediatrics, psychology, public health, radiology, and speech-language pathology. These attendees also represented 16 professional societies and peer-reviewed journals. The current state of knowledge related to each discipline was reviewed. Based on areas of expertise, four breakout groups were created to reach a consensus and draft specialtyspecific parameters of care based on the literature or, in the absence of literature, broad clinical experience. In an iterative manner, the specialty-specific draft recommendations were presented to all conference attendees. Participants discussed the recommendations in multidisciplinary groups to facilitate exchange and consensus across disciplines. After the conference, a pediatric intensivist and social worker reviewed the recommendations. Results: Consensus was reached among the 52 conference attendees and two post hoc reviewers. Longitudinal parameters of care were developed for the diagnosis, treatment, and management of craniosynostosis in each of the 18 specialty areas of care from prenatal evaluation to adulthood. Conclusions: To our knowledge, this is the first multidisciplinary effort to develop parameters of care for craniosynostosis. These parameters were designed to help facilitate the development of educational programs for the patient, families, and health-care professionals; stimulate the creation of a national database and registry to promote research, especially in the area of outcome studies; improve credentialing of interdisciplinary craniofacial clinical teams; and improve the availability of health insurance coverage for all individuals with craniosynostosis.

AB - Background: A multidisciplinary meeting was held from March 4 to 6, 2010, in Atlanta, Georgia, entitled "Craniosynostosis: Developing Parameters for Diagnosis, Treatment, and Management." The goal of this meeting was to create parameters of care for individuals with craniosynostosis. Methods: Fifty-two conference attendees represented a broad range of expertise, including anesthesiology, craniofacial surgery, dentistry, genetics, hand surgery, neurosurgery, nursing, ophthalmology, oral and maxillofacial surgery, orthodontics, otolaryngology, pediatrics, psychology, public health, radiology, and speech-language pathology. These attendees also represented 16 professional societies and peer-reviewed journals. The current state of knowledge related to each discipline was reviewed. Based on areas of expertise, four breakout groups were created to reach a consensus and draft specialtyspecific parameters of care based on the literature or, in the absence of literature, broad clinical experience. In an iterative manner, the specialty-specific draft recommendations were presented to all conference attendees. Participants discussed the recommendations in multidisciplinary groups to facilitate exchange and consensus across disciplines. After the conference, a pediatric intensivist and social worker reviewed the recommendations. Results: Consensus was reached among the 52 conference attendees and two post hoc reviewers. Longitudinal parameters of care were developed for the diagnosis, treatment, and management of craniosynostosis in each of the 18 specialty areas of care from prenatal evaluation to adulthood. Conclusions: To our knowledge, this is the first multidisciplinary effort to develop parameters of care for craniosynostosis. These parameters were designed to help facilitate the development of educational programs for the patient, families, and health-care professionals; stimulate the creation of a national database and registry to promote research, especially in the area of outcome studies; improve credentialing of interdisciplinary craniofacial clinical teams; and improve the availability of health insurance coverage for all individuals with craniosynostosis.

KW - Child

KW - Child, Preschool

KW - Craniosynostoses

KW - Humans

KW - Infant

KW - Infant, Newborn

KW - Practice Guidelines as Topic

U2 - 10.1597/11-138

DO - 10.1597/11-138

M3 - Journal article

C2 - 21848431

SN - 1055-6656

VL - 49 Suppl

SP - 1S-24S

JO - Cleft Palate - Craniofacial Journal

JF - Cleft Palate - Craniofacial Journal

ER -

Parameters of care for craniosynostosis

Abstract

Keywords

UN SDGs

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