Starting a Cleft Team: A Primer Randolph B. Capone, MDa,*, Sydney C. Butts, MDb, Lamont R. Jones, MDc KEYWORDS Cleft lip Cleft palate Craniofacial anomaly Facial plastic surgery Multidisciplinary cleft team
KEY POINTS Care of congenital cleft and craniofacial anomalies is best delivered with multidisciplinary teams led by clinicians with high levels of training and motivation. Facial plastic surgeons have the training and expertise to assume leadership positions on multidisciplinary cleft teams. Many organizational steps are required to establish a team and to maintain it. Formalized parameters have been adopted by the American Cleft Palate-Craniofacial Association for the establishment of teams that describe specialty representation, timing of evaluations, and documentation of clinical activities. We present a primer that serves as a guide for developing a team, including the process of needsassessment, clinician recruitment, and institutional support.
Multidisciplinary, team-based care for patients with congenital cleft and craniofacial anomalies has been a standard format in North America and Europe for more than 70 years.1–3 Although many teams have been in existence for decades, new teams are encouraged to apply for certification through the American Cleft Palate–Craniofacial Association (ACPA), the largest professional organization representing clinicians that care for patients with orofacial clefts in North America and internationally.4,5 The ACPA has issued parameters for the establishment and maintenance of cleft and craniofacial teams.6 Such care requires significant health care resources, because many patients need staged surgery and treatments from infancy until late adolescence.7–9 Access to expert care must be readily available to prevent treatment delays and their adverse consequences.9,10
Otolaryngologists/head and neck surgeons have long provided specialized care for patients with orofacial clefts.11,12 Over the past few decades, increased interest and expertise in all facets of cleft and craniofacial care have developed among otolaryngologists/head and neck surgeons. Professional societies including the American Academy of Facial Plastic and Reconstructive Surgery (AAFPRS), the American Society of Pediatric Otolaryngology, and the Society for Ear, Nose, and Throat Advances in Children have made the management of cleft and craniofacial anomalies a priority among their members.13–15 With the efforts of such organizations, greater numbers of facial plastic surgeons and pediatric otolaryngologists are positioned to lead cleft and craniofacial teams and serve local populations in regions where there is a need for this care. Greater domestic participation enhances
a The Department of Otolaryngology - Head and Neck Surgery, Greater Baltimore Cleft Lip and Palate Team, The Johns Hopkins University School of Medicine, 6535 North Charles Street, Suite 220, Baltimore, MD 21204, USA; b The Division of Facial Plastic and Reconstructive Surgery, The Department of Otolaryngology - Head and Neck Surgery, Greater Brooklyn Cleft and Craniofacial Team, The State University of New York, Downstate Medical Center, 450 Clarkson Avenue, Brooklyn, NY 11203, USA; c The Department of Otolaryngology - Head and Neck Surgery, Cleft and Craniofacial Clinic, The Henry Ford Health System, 2799 West Grant Boulevard, Detroit, MI 48202, USA * Corresponding author. 6535 North Charles Street, Suite 220, Baltimore, MD 21204. E-mail address: [email protected]
Facial Plast Surg Clin N Am 22 (2014) 587–591 http://dx.doi.org/10.1016/j.fsc.2014.08.001 1064-7406/14/$ – see front matter Ó 2014 Elsevier Inc. All rights reserved.
facialplastic.theclinics.com
INTRODUCTION
588
Capone et al surgeon experience via increased clinical exposure and additional numbers of surgical cases encountered more evenly throughout one’s career. This participation also engenders goodwill between the surgeon’s institution and the community served.16 The Cleft and Craniofacial Subcommittee of the AAFPRS Specialty Surgery Committee makes recommendations for educational and outreach goals related to cleft and craniofacial work. The subcommittee is comprised of surgeons who currently lead US cleft teams domestically and who participate in cleft and craniofacial missions internationally. Many surgeons on the subcommittee are also faculty in residency training programs where comprehensive management of patients with orofacial clefts is emphasized. To assist surgeons interested in starting a cleft team, the subcommittee developed a list of action items believed to be important in the establishment of a cleft team. This article provides surgeons with a guide for assembling a high-quality team, focusing on assessment of clinical need, recruitment of team members, community outreach, and team development.
METHODOLOGY The authors, who each codirect cleft teams at their home institutions and who are members of the Cleft and Craniofacial Subcommittee of the AAFPRS Specialty Surgery Committee, developed a list of recommendations. The recommendations were circulated to all members of the Subcommittee for feedback and ratification. Current guidelines for multidisciplinary cleft and craniofacial care in the literature served as the basis for many of the recommendations.
RESULTS A list of 20 recommendations was generated. These recommendations were not ranked in any particular sequence or weighted in order of importance, but were organized into five general categories: (1) surgical training and board certification; (2) identification of clinical need and hospital selection; (3) team format, recruitment, and certification; (4) budget and finance; and (5) marketing.
Surgical Training and Board Certification Cleft team success relies heavily on clinical ability, surgical skills, and dedication to cleft care. There is no substitute for excellent work. Surgeons should be superbly trained and appropriately board certified (ABFPRS, ABOto). Documentation of appropriate cleft experience (residency, fellowship, and mission caseloads) is a mandatory requirement
to demonstrate proficiency and to obtain surgical privileges for cleft and craniofacial cases. Anyone considering formation of a cleft team should join the ACPA and maintain membership. Attendance at national cleft conferences is advisable. Visits to observe other cleft surgeons are encouraged. It is also important to recognize that it is not essential to start as a team leader; starting as a founding team member is perfectly appropriate.
Identification of Clinical Need and Hospital Selection The ideal setting for a nascent cleft team is a hospital with a high volume of annual births (>4000), a neonatal intensive care unit (NICU), and the presence of crucial ancillary services including speech-language pathology, nutrition, pediatric dentistry and orthodontics, lactation services, and clinical genetics. The presence of nearby hospitals that do not have a cleft team is helpful for additional referrals. Cleft team leaders should meet with chairs of clinical departments (pediatrics, plastic surgery, otolaryngology) to discuss the cleft team initiative. These departments are positioned to provide fiscal support, space, and staffing, and also can help identify the optimal physical location for team meetings (clinical examination space and team conference space). Cleft team leaders should meet with hospital administrators (eg, CEO, director of marketing, director of research, director of development) to explain team goals and how a cleft team can positively impact the community. Meetings with nursing administration should focus on newborn nursery needs, postoperative protocols, and the development of critical pathways and electronic order sets.
Team Format, Recruitment, and Certification i. Identify and invite a like-minded surgeon to participate equally or to provide mentoring (if someone more experienced). Designate team leaders and codirectors. ii. Understand and embrace the cleft team concept.6,8 iii. Review the ACPA guidelines for a cleft team and make concrete plans to obtain certification within the first 3 to 5 years. The benefits of ACPA certification include listings in the ACPA directory of teams and Web site team locater. Certification also helps significantly with marketing initiatives. iv. Identify and pick core team members from surgery, orthodontics, speech pathology, social work, pediatrics, genetics, and audiology, and members from related specialties
Starting a Cleft Team
v. vi.
vii.
viii.
ix.
including ophthalmology, oral surgery, and dentistry. Always maintain an attitude of inclusivity with all plastic surgery and oral surgery colleagues. Meet with your team’s key ancillary staff members regularly (eg, speech pathology or audiology) to discuss patient care or interesting new study findings, even if in the early days there are few patients to see. Be careful, however, not to burden them, because they may not share your enthusiasm at first. Determine a team meeting frequency and format (eg, bimonthly meeting with patient appointments followed by team discussion with care coordination). Establish clinical goals for your team (eg, a 5-year plan). Such goals as an annual number of new patient encounters and number of surgical cases are very useful. Other goals including publications, additional team member recruitment, and fundraising levels are also recommended. Develop a patient database and standardize data acquisition. Record patient outcomes. Try to link this database to your team’s electronic medical record. Patient outcomes serve as the basis for clinical research.
Budget and Finance Develop a budget, including such items as educational reference materials, marketing efforts, and team coordinator salary. Costs to support additional needs associated with cleft care including specialty nipples, feeders, and transportation vouchers can be subsidized by the cleft team if there are adequate funds. Fundraising efforts should highlight the costs involved in growing and maintaining a cleft team. In addition to seeking internal institutional support, identify a list of potential donors (individuals, corporations, foundations) and begin fundraising efforts and grant applications. Multiple fundraising events can be planned that feature members of the cleft team. The recruitment of local figures well known in the community to headline these events is an effective way to increase fundraising success.
Marketing i. Develop a team name. Create social media accounts. Have the home institution’s marketing department create Web pages on the hospital’s Web site. Start an independent team Web site and keep content fresh. Develop handouts and a team brochure.
ii. Host simple “meet and greet” events with clinical departments and divisions: NICU, genetics, pediatrics, family medicine, obstetrics and gynecology. Meet their physicians and staff members, hand out brochures, give pertinent contact information and reprints of publications or chapters published by cleft team members. iii. Be willing to see unrelated consultations and do not expect primary care providers to trust you initially. Revisions, patients with postpalatoplasty velopharyngeal insufficiency, fistulas, and other secondary deformities may make up most initial cases until neonatal referrals become more frequent. iv. Hold annual team executive meetings to present clinical outcomes and tout academic endeavors. Foster an environment that encourages publishing and presenting. Invite hospital administrators and the team’s donors. v. Strategize marketing plans and be creative. Send the team’s cleft coordinator, nurse, or feeding specialist to deliver light food and marketing materials to neighboring NICUs and newborn nurseries. Organize and host a cleft seminar with an invited guest speaker at the home institution, targeting all relevant disciplines in the team’s catchment with invitations. Encourage patients, families, and staff to participate in an existing local summer camp for cleft-affected children, or host your own annual team picnic. Identify an energetic team parent (who is happy with their child’s outcome) and recruit them to start a local cleft support group, perhaps with the assistance of the team’s social worker.
DISCUSSION The role of the otolaryngologist/head and neck surgeon in cleft and craniofacial teams now routinely includes the reconstructive surgical procedures that patients require throughout the duration of their care. As such, many facial plastic surgeons and pediatric otolaryngologists are poised to assume leadership roles on established cleft and craniofacial teams or to begin new teams. Cleft and craniofacial anomalies represent some of the most prevalent congenital birth defects, yet there may still be areas in which access to multidisciplinary cleft and craniofacial care, the agreed on standard, is suboptimal.1,2,6,17–20 The availability of surgeons dedicated to the care of these patients should be a high priority for the health care system. Resident education in otolaryngology/head and neck surgery in the United States includes the management of the care of patients born with congenital craniofacial anomalies, including cleft
589
590
Capone et al lip and palate. Additionally, there are an increasing number of fellowships in facial plastic and reconstructive surgery and pediatric otolaryngology that offer strong training in this area, producing individuals skilled in the management of orofacial clefts. On completion of training, all surgeons often face challenges in generating adequate patient referrals, and cleft referrals are no exception. Some providers jettison this part of their practice or alternatively supplement their experience with participation in mission trips abroad. Contemporary management of orofacial clefts, however, ideally warrants homogeneous, year-round experiences. For individuals with serious interest in providing quality cleft care, participation in an established cleft team at a local institution is mandatory. Many established teams are located at large academic centers with well-established referral patterns. Opportunities to participate with such teams are infrequent because they have little need for additional surgeons given their surgical volumes. The expansion of cleft care in the United States with the formation of additional, high-quality teams is an opportunity for facial plastic surgeons to work with hospitals that possess many of the resources that could support this work, but have never had a clinical leader to spearhead such an initiative. The present work offers guidelines for motivated surgeons who care deeply about practicing cleft care with similarly minded individuals and who desire to provide care commensurate with standards set forth by the ACPA.
SUMMARY Clinical expertise is the primary qualification for leading a cleft and craniofacial team. Successful teams also implement organizational and outreach strategies to thrive. The establishment of a cleft team at a domestic medical center can provide multiple benefits for the community served, the team’s members, the medical center itself, and even the recipients of charity mission work abroad. With diligence, ample forethought, preparation, and networking, surgeons with appropriate cleft training can use the 20 recommendations presented here from the Cleft and Craniofacial Subcommittee of the Specialty Surgery Committee of the American Academy of Facial Plastic and Reconstructive Surgery to develop a local team of experts to provide superlative care to children with congenital facial malformations.
ACKNOWLEDGMENTS The authors have no conflicts of interest, including financial interests, activities, relationships, or
affiliations. No grants or financial support were received for this work. The authors thank Dr S.A. Tatum III and Dr J.M. Sykes for their thoughtful review and constructive comments, and Mrs A.H. Jenne for her administrative assistance.
REFERENCES 1. Long R. Improving outcomes for the patient with cleft lip and palate: The team concept and 70 years of experience in cleft care. The Journal of Lancaster General Hospital 2009;4(2):52–6. 2. Strauss RP. ACPA Team Standards Committee. Cleft palate and craniofacial teams in the United States and Canada: a national survey of team organization and standards of care. Cleft Palate Craniofac J 1998;35(6):473–80. 3. Bill J, Proff P, Bayerlein T, et al. Treatment of patients with cleft lip, alveolus and palate–a short outline of history and current interdisciplinary treatment approaches. J Craniomaxillofac Surg 2006;34(Suppl 2): 17–21. 4. Commision on Approval of Teams. Standards for Approval of Cleft Palate and Craniofacial Teams. Available at: www.acpa-cpf.com. Updated March, 2010. Accessed January 15, 2014. 5. Richman LC. President’s perceptions: an historic review of fifty years of the American Cleft PalateCraniofacial Association. Cleft Palate Craniofac J 1993;30(6):521–7. 6. American Cleft Palate-Craniofacial Association. Parameters for evaluation and treatment of patients with cleft lip/palate or other craniofacial anomalies. Cleft Palate Craniofac J 1993;30(Supp 1):S1–16. revised 2009. Available at: http://www.acpa-cpf. org/uploads/site/Parameters_Rev_2009.pdf. Accessed August 27, 2014. 7. Chuo CB, Searle Y, Jeremy A, et al. The continuing multidisciplinary needs of adult patients with cleft lip and/or palate. Cleft Palate Craniofac J 2008; 45(6):633–8. 8. Capone RB, Sykes JM. The cleft and craniofacial team: the whole is greater than the sum of its parts. Facial Plast Surg 2007;23(2):83–6. 9. New York State Department of Health. Congenital malformations registry summary report: statistical summary of children born in 2005 and diagnosed through 2007. New York: Congenital Malformations Registry, New York State Department of Health Center for Environmental Health, Bureau of Environmental and Occupational Epidemiology; 2008. Available at: http://www.health.ny.gov/diseases/ congenital_malformations/2005/docs/2005_report. pdf. Accessed August 27, 2014. 10. Austin AA, Druschel CM, Tyler MC, et al. Interdisciplinary craniofacial teams compared with individual providers: is orofacial cleft care more comprehensive
Starting a Cleft Team
11.
12.
13. 14. 15.
and do parents perceive better outcomes? Cleft Palate Craniofac J 2010;47(1):1–8. Smith LK, Gubbels SP, MacArthur CJ, et al. The effect of the palatoplasty method on the frequency of ear tube placement. Arch Otolaryngol Head Neck Surg 2008;134(10):1085–9. Drake AF, Rosenthal LH. Otolaryngologic challenges in cleft/craniofacial care. Cleft Palate Craniofac J 2013;50(6):734–43. Available at: www.aspo.us. Accessed January 15, 2014. Available at: www.sentac.org. Accessed January 15, 2014. Available at: www.aafprs.org. Accessed January 15, 2014.
16. Tolarova´ MM, Poulton D, Aubert MM, et al. Pacific Craniofacial Team and Cleft Prevention Program. J Calif Dent Assoc 2006;34(10):823–30. 17. Jaju R, Tate AR. The role of pediatric dentistry in multidisciplinary cleft palate teams at advanced pediatric dental residency programs. Pediatr Dent 2009;31(3):188–92. 18. Laub DR Jr, Ajar AH. A survey of multidisciplinary cleft palate and craniofacial team examination formats. J Craniofac Surg 2012;23(4):1002–4. 19. Vargervik K, Oberoi S, Hoffman WY. Team care for the patient with cleft: UCSF protocols and outcomes. J Craniofac Surg 2009;20(Suppl 2):1668–71. 20. Wellens W, Vander Poorten V. Keys to a successful cleft lip and palate team. B-ENT 2006;2(Suppl 4):3–10.
591
KEY POINTS Care of congenital cleft and craniofacial anomalies is best delivered with multidisciplinary teams led by clinicians with high levels of training and motivation. Facial plastic surgeons have the training and expertise to assume leadership positions on multidisciplinary cleft teams. Many organizational steps are required to establish a team and to maintain it. Formalized parameters have been adopted by the American Cleft Palate-Craniofacial Association for the establishment of teams that describe specialty representation, timing of evaluations, and documentation of clinical activities. We present a primer that serves as a guide for developing a team, including the process of needsassessment, clinician recruitment, and institutional support.
Multidisciplinary, team-based care for patients with congenital cleft and craniofacial anomalies has been a standard format in North America and Europe for more than 70 years.1–3 Although many teams have been in existence for decades, new teams are encouraged to apply for certification through the American Cleft Palate–Craniofacial Association (ACPA), the largest professional organization representing clinicians that care for patients with orofacial clefts in North America and internationally.4,5 The ACPA has issued parameters for the establishment and maintenance of cleft and craniofacial teams.6 Such care requires significant health care resources, because many patients need staged surgery and treatments from infancy until late adolescence.7–9 Access to expert care must be readily available to prevent treatment delays and their adverse consequences.9,10
Otolaryngologists/head and neck surgeons have long provided specialized care for patients with orofacial clefts.11,12 Over the past few decades, increased interest and expertise in all facets of cleft and craniofacial care have developed among otolaryngologists/head and neck surgeons. Professional societies including the American Academy of Facial Plastic and Reconstructive Surgery (AAFPRS), the American Society of Pediatric Otolaryngology, and the Society for Ear, Nose, and Throat Advances in Children have made the management of cleft and craniofacial anomalies a priority among their members.13–15 With the efforts of such organizations, greater numbers of facial plastic surgeons and pediatric otolaryngologists are positioned to lead cleft and craniofacial teams and serve local populations in regions where there is a need for this care. Greater domestic participation enhances
a The Department of Otolaryngology - Head and Neck Surgery, Greater Baltimore Cleft Lip and Palate Team, The Johns Hopkins University School of Medicine, 6535 North Charles Street, Suite 220, Baltimore, MD 21204, USA; b The Division of Facial Plastic and Reconstructive Surgery, The Department of Otolaryngology - Head and Neck Surgery, Greater Brooklyn Cleft and Craniofacial Team, The State University of New York, Downstate Medical Center, 450 Clarkson Avenue, Brooklyn, NY 11203, USA; c The Department of Otolaryngology - Head and Neck Surgery, Cleft and Craniofacial Clinic, The Henry Ford Health System, 2799 West Grant Boulevard, Detroit, MI 48202, USA * Corresponding author. 6535 North Charles Street, Suite 220, Baltimore, MD 21204. E-mail address: [email protected]
Facial Plast Surg Clin N Am 22 (2014) 587–591 http://dx.doi.org/10.1016/j.fsc.2014.08.001 1064-7406/14/$ – see front matter Ó 2014 Elsevier Inc. All rights reserved.
facialplastic.theclinics.com
INTRODUCTION
588
Capone et al surgeon experience via increased clinical exposure and additional numbers of surgical cases encountered more evenly throughout one’s career. This participation also engenders goodwill between the surgeon’s institution and the community served.16 The Cleft and Craniofacial Subcommittee of the AAFPRS Specialty Surgery Committee makes recommendations for educational and outreach goals related to cleft and craniofacial work. The subcommittee is comprised of surgeons who currently lead US cleft teams domestically and who participate in cleft and craniofacial missions internationally. Many surgeons on the subcommittee are also faculty in residency training programs where comprehensive management of patients with orofacial clefts is emphasized. To assist surgeons interested in starting a cleft team, the subcommittee developed a list of action items believed to be important in the establishment of a cleft team. This article provides surgeons with a guide for assembling a high-quality team, focusing on assessment of clinical need, recruitment of team members, community outreach, and team development.
METHODOLOGY The authors, who each codirect cleft teams at their home institutions and who are members of the Cleft and Craniofacial Subcommittee of the AAFPRS Specialty Surgery Committee, developed a list of recommendations. The recommendations were circulated to all members of the Subcommittee for feedback and ratification. Current guidelines for multidisciplinary cleft and craniofacial care in the literature served as the basis for many of the recommendations.
RESULTS A list of 20 recommendations was generated. These recommendations were not ranked in any particular sequence or weighted in order of importance, but were organized into five general categories: (1) surgical training and board certification; (2) identification of clinical need and hospital selection; (3) team format, recruitment, and certification; (4) budget and finance; and (5) marketing.
Surgical Training and Board Certification Cleft team success relies heavily on clinical ability, surgical skills, and dedication to cleft care. There is no substitute for excellent work. Surgeons should be superbly trained and appropriately board certified (ABFPRS, ABOto). Documentation of appropriate cleft experience (residency, fellowship, and mission caseloads) is a mandatory requirement
to demonstrate proficiency and to obtain surgical privileges for cleft and craniofacial cases. Anyone considering formation of a cleft team should join the ACPA and maintain membership. Attendance at national cleft conferences is advisable. Visits to observe other cleft surgeons are encouraged. It is also important to recognize that it is not essential to start as a team leader; starting as a founding team member is perfectly appropriate.
Identification of Clinical Need and Hospital Selection The ideal setting for a nascent cleft team is a hospital with a high volume of annual births (>4000), a neonatal intensive care unit (NICU), and the presence of crucial ancillary services including speech-language pathology, nutrition, pediatric dentistry and orthodontics, lactation services, and clinical genetics. The presence of nearby hospitals that do not have a cleft team is helpful for additional referrals. Cleft team leaders should meet with chairs of clinical departments (pediatrics, plastic surgery, otolaryngology) to discuss the cleft team initiative. These departments are positioned to provide fiscal support, space, and staffing, and also can help identify the optimal physical location for team meetings (clinical examination space and team conference space). Cleft team leaders should meet with hospital administrators (eg, CEO, director of marketing, director of research, director of development) to explain team goals and how a cleft team can positively impact the community. Meetings with nursing administration should focus on newborn nursery needs, postoperative protocols, and the development of critical pathways and electronic order sets.
Team Format, Recruitment, and Certification i. Identify and invite a like-minded surgeon to participate equally or to provide mentoring (if someone more experienced). Designate team leaders and codirectors. ii. Understand and embrace the cleft team concept.6,8 iii. Review the ACPA guidelines for a cleft team and make concrete plans to obtain certification within the first 3 to 5 years. The benefits of ACPA certification include listings in the ACPA directory of teams and Web site team locater. Certification also helps significantly with marketing initiatives. iv. Identify and pick core team members from surgery, orthodontics, speech pathology, social work, pediatrics, genetics, and audiology, and members from related specialties
Starting a Cleft Team
v. vi.
vii.
viii.
ix.
including ophthalmology, oral surgery, and dentistry. Always maintain an attitude of inclusivity with all plastic surgery and oral surgery colleagues. Meet with your team’s key ancillary staff members regularly (eg, speech pathology or audiology) to discuss patient care or interesting new study findings, even if in the early days there are few patients to see. Be careful, however, not to burden them, because they may not share your enthusiasm at first. Determine a team meeting frequency and format (eg, bimonthly meeting with patient appointments followed by team discussion with care coordination). Establish clinical goals for your team (eg, a 5-year plan). Such goals as an annual number of new patient encounters and number of surgical cases are very useful. Other goals including publications, additional team member recruitment, and fundraising levels are also recommended. Develop a patient database and standardize data acquisition. Record patient outcomes. Try to link this database to your team’s electronic medical record. Patient outcomes serve as the basis for clinical research.
Budget and Finance Develop a budget, including such items as educational reference materials, marketing efforts, and team coordinator salary. Costs to support additional needs associated with cleft care including specialty nipples, feeders, and transportation vouchers can be subsidized by the cleft team if there are adequate funds. Fundraising efforts should highlight the costs involved in growing and maintaining a cleft team. In addition to seeking internal institutional support, identify a list of potential donors (individuals, corporations, foundations) and begin fundraising efforts and grant applications. Multiple fundraising events can be planned that feature members of the cleft team. The recruitment of local figures well known in the community to headline these events is an effective way to increase fundraising success.
Marketing i. Develop a team name. Create social media accounts. Have the home institution’s marketing department create Web pages on the hospital’s Web site. Start an independent team Web site and keep content fresh. Develop handouts and a team brochure.
ii. Host simple “meet and greet” events with clinical departments and divisions: NICU, genetics, pediatrics, family medicine, obstetrics and gynecology. Meet their physicians and staff members, hand out brochures, give pertinent contact information and reprints of publications or chapters published by cleft team members. iii. Be willing to see unrelated consultations and do not expect primary care providers to trust you initially. Revisions, patients with postpalatoplasty velopharyngeal insufficiency, fistulas, and other secondary deformities may make up most initial cases until neonatal referrals become more frequent. iv. Hold annual team executive meetings to present clinical outcomes and tout academic endeavors. Foster an environment that encourages publishing and presenting. Invite hospital administrators and the team’s donors. v. Strategize marketing plans and be creative. Send the team’s cleft coordinator, nurse, or feeding specialist to deliver light food and marketing materials to neighboring NICUs and newborn nurseries. Organize and host a cleft seminar with an invited guest speaker at the home institution, targeting all relevant disciplines in the team’s catchment with invitations. Encourage patients, families, and staff to participate in an existing local summer camp for cleft-affected children, or host your own annual team picnic. Identify an energetic team parent (who is happy with their child’s outcome) and recruit them to start a local cleft support group, perhaps with the assistance of the team’s social worker.
DISCUSSION The role of the otolaryngologist/head and neck surgeon in cleft and craniofacial teams now routinely includes the reconstructive surgical procedures that patients require throughout the duration of their care. As such, many facial plastic surgeons and pediatric otolaryngologists are poised to assume leadership roles on established cleft and craniofacial teams or to begin new teams. Cleft and craniofacial anomalies represent some of the most prevalent congenital birth defects, yet there may still be areas in which access to multidisciplinary cleft and craniofacial care, the agreed on standard, is suboptimal.1,2,6,17–20 The availability of surgeons dedicated to the care of these patients should be a high priority for the health care system. Resident education in otolaryngology/head and neck surgery in the United States includes the management of the care of patients born with congenital craniofacial anomalies, including cleft
589
590
Capone et al lip and palate. Additionally, there are an increasing number of fellowships in facial plastic and reconstructive surgery and pediatric otolaryngology that offer strong training in this area, producing individuals skilled in the management of orofacial clefts. On completion of training, all surgeons often face challenges in generating adequate patient referrals, and cleft referrals are no exception. Some providers jettison this part of their practice or alternatively supplement their experience with participation in mission trips abroad. Contemporary management of orofacial clefts, however, ideally warrants homogeneous, year-round experiences. For individuals with serious interest in providing quality cleft care, participation in an established cleft team at a local institution is mandatory. Many established teams are located at large academic centers with well-established referral patterns. Opportunities to participate with such teams are infrequent because they have little need for additional surgeons given their surgical volumes. The expansion of cleft care in the United States with the formation of additional, high-quality teams is an opportunity for facial plastic surgeons to work with hospitals that possess many of the resources that could support this work, but have never had a clinical leader to spearhead such an initiative. The present work offers guidelines for motivated surgeons who care deeply about practicing cleft care with similarly minded individuals and who desire to provide care commensurate with standards set forth by the ACPA.
SUMMARY Clinical expertise is the primary qualification for leading a cleft and craniofacial team. Successful teams also implement organizational and outreach strategies to thrive. The establishment of a cleft team at a domestic medical center can provide multiple benefits for the community served, the team’s members, the medical center itself, and even the recipients of charity mission work abroad. With diligence, ample forethought, preparation, and networking, surgeons with appropriate cleft training can use the 20 recommendations presented here from the Cleft and Craniofacial Subcommittee of the Specialty Surgery Committee of the American Academy of Facial Plastic and Reconstructive Surgery to develop a local team of experts to provide superlative care to children with congenital facial malformations.
ACKNOWLEDGMENTS The authors have no conflicts of interest, including financial interests, activities, relationships, or
affiliations. No grants or financial support were received for this work. The authors thank Dr S.A. Tatum III and Dr J.M. Sykes for their thoughtful review and constructive comments, and Mrs A.H. Jenne for her administrative assistance.
REFERENCES 1. Long R. Improving outcomes for the patient with cleft lip and palate: The team concept and 70 years of experience in cleft care. The Journal of Lancaster General Hospital 2009;4(2):52–6. 2. Strauss RP. ACPA Team Standards Committee. Cleft palate and craniofacial teams in the United States and Canada: a national survey of team organization and standards of care. Cleft Palate Craniofac J 1998;35(6):473–80. 3. Bill J, Proff P, Bayerlein T, et al. Treatment of patients with cleft lip, alveolus and palate–a short outline of history and current interdisciplinary treatment approaches. J Craniomaxillofac Surg 2006;34(Suppl 2): 17–21. 4. Commision on Approval of Teams. Standards for Approval of Cleft Palate and Craniofacial Teams. Available at: www.acpa-cpf.com. Updated March, 2010. Accessed January 15, 2014. 5. Richman LC. President’s perceptions: an historic review of fifty years of the American Cleft PalateCraniofacial Association. Cleft Palate Craniofac J 1993;30(6):521–7. 6. American Cleft Palate-Craniofacial Association. Parameters for evaluation and treatment of patients with cleft lip/palate or other craniofacial anomalies. Cleft Palate Craniofac J 1993;30(Supp 1):S1–16. revised 2009. Available at: http://www.acpa-cpf. org/uploads/site/Parameters_Rev_2009.pdf. Accessed August 27, 2014. 7. Chuo CB, Searle Y, Jeremy A, et al. The continuing multidisciplinary needs of adult patients with cleft lip and/or palate. Cleft Palate Craniofac J 2008; 45(6):633–8. 8. Capone RB, Sykes JM. The cleft and craniofacial team: the whole is greater than the sum of its parts. Facial Plast Surg 2007;23(2):83–6. 9. New York State Department of Health. Congenital malformations registry summary report: statistical summary of children born in 2005 and diagnosed through 2007. New York: Congenital Malformations Registry, New York State Department of Health Center for Environmental Health, Bureau of Environmental and Occupational Epidemiology; 2008. Available at: http://www.health.ny.gov/diseases/ congenital_malformations/2005/docs/2005_report. pdf. Accessed August 27, 2014. 10. Austin AA, Druschel CM, Tyler MC, et al. Interdisciplinary craniofacial teams compared with individual providers: is orofacial cleft care more comprehensive
Starting a Cleft Team
11.
12.
13. 14. 15.
and do parents perceive better outcomes? Cleft Palate Craniofac J 2010;47(1):1–8. Smith LK, Gubbels SP, MacArthur CJ, et al. The effect of the palatoplasty method on the frequency of ear tube placement. Arch Otolaryngol Head Neck Surg 2008;134(10):1085–9. Drake AF, Rosenthal LH. Otolaryngologic challenges in cleft/craniofacial care. Cleft Palate Craniofac J 2013;50(6):734–43. Available at: www.aspo.us. Accessed January 15, 2014. Available at: www.sentac.org. Accessed January 15, 2014. Available at: www.aafprs.org. Accessed January 15, 2014.
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