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Assuming Care of Patients with Cleft Lip and/or Palate Columbine Che and Alison Kaye UMKC School of Medicine and Children’s Mercy Hospital, Kansas City,

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Presentation on theme: "Assuming Care of Patients with Cleft Lip and/or Palate Columbine Che and Alison Kaye UMKC School of Medicine and Children’s Mercy Hospital, Kansas City,"— Presentation transcript:

1 Assuming Care of Patients with Cleft Lip and/or Palate Columbine Che and Alison Kaye UMKC School of Medicine and Children’s Mercy Hospital, Kansas City, MO BACKGROUND Congenital facial clefting involving the lip and/or palate has an average incidence of 1:750 live births worldwide[1,2]. Patients with congenital clefting may have concurrent syndromes and different anatomical variations. Most common are isolated cleft lip (CL), cleft lip with cleft palate (CLP) or isolated cleft palate (CP). Depending on the cleft location and severity, patients will be recommended for surgery to repair the defects, usually over the course of the first 12-18 months of life. Additional surgeries may be required at later times, or to correct or improve less than ideal outcomes. Cleft care typically continues throughout childhood to monitor growth and development, speech, hearing, behavior, and teeth. Comprehensive care within a Cleft Team setting is recommended to provide ideal care for these often complex patients. Every year our cleft team cares for a large number of children who have received their initial care at other institutions prior to presenting at Children’s Mercy Hospital (CMH). This occurs for a multitude of reasons including interstate moves, adoptions, and outside Cleft Team dissolution. The assumption of care for a child with a congenital clefting presents challenges regarding preoperative and surgical management and timing of operations. With a variety of Cleft Care protocols available, we are often presented with patients who have started on a different pathway, making it especially difficult to transition mid-stream. Delays or lapses in surgical care and coincident therapies often arise as a result of the time it takes to reestablish medical care after a move or other life change. Our interest for this study is to identify current patients who are not internationally adopted and have a history of cleft care transfer to CMH. We hope to understand this group better in terms of their presenting conditions, history of surgery, and concomitant medical issues. This study will allow us to better understand the role of continuity of care in the cleft lip and palate population and to anticipate the needs of these patients and provide for their comprehensive care. RESULTS Demographics 165 patients: 60 females, 105 males 33 with cleft lip only, 32 with cleft palate only, 100 with cleft lip and palate 18 patients were syndromic. 6 patients had Pierre Robbin Sequence Prior Surgeries 99% of cleft lip patients and 87.9% of cleft lip and palate patients presented after primary lip and/or palate repair. The average age for primary palate repair after transfer was 17.61 months (SD 7.62). Revisional Surgeries and Complications 48 patients (29.1%) reported 89 previous revisional surgeries: lip revision, posterior pharyngeal flap, and fistula repair were most common. 95 patients (57.58%) required a total of 152 revisional procedures after transfer: palatal lengthening, fistula repair, and lip/nose revisions being most common. 34.78% of patients with repaired clefts presented with moderate to severe articulation errors and 52.17% had hypernasality. CONCLUSION AND FUTURE RESEARCH Patients who transition their cleft care can present with a complex variety of previous surgeries requiring multiple revisional procedures To determine if transfer patients are medically or surgically more complex than those children who present to CMH for initial cleft treatment at birth, a comparison of CMH patient transfer results to non-transfer CMH cleft patients is necessary. This comparison will allow us to better understand the role of continuity of care in the cleft lip and palate population. Furthermore, this will allow us to better anticipate the needs of these patients and provide for their comprehensive care. CREDITS/DISCLOSURE/REFERENCES 1.Mossey PA, Little J. Epidemiology of oral clefts: an international perspective. In: Wyszynski DF (ed.) Cleft Lip and Palate: From Origin to Treatment. New York, Oxford University Press, 2002. 2.Comprehensive Cleft Care. Losee JE and Kirschner RE, eds. McGraw-Hill Professional; 1st ed. October, 2008. The authors have no conflicts of interest to disclose For further information please contact Columbine Che, cncd49@mail.umkc.edu or Alison Kaye, aekaye@cmh.edu SUMMARY PURPOSE: Comprehensive care for children with cleft lip/palate conditions typically spans their entire childhood. Annually, our cleft team cares for many children who have received various amount of initial care at other institutions. Assuming mid-treatment care of these patients presents numerous management challenges, including poor outcomes and lapses in care. This study aims to analyze this under-recognized population at presentation and assess their need for further interventions. METHODS: Retrospective review of patients >6 months old presenting for cleft care from 2004 and 2014 who previously received care at another institution. RESULTS: 165 patients were identified with a variety of conditions: CL=33, CLP=100, CP=32; 18 syndromic patients and 6 Pierre Robin Sequence. Average age at transfer was 6.89 years (SD 4.47). Patients presented from 31 states and 6 foreign countries. Reasons for team transfer include family moves, military transfers, loss of surgeon, second opinions, and domestic adoption. 99% of CL patients and 87.9% of CL/P patients presented after primary lip and/or palate repair. Average age for primary palate repair after transfer was 17.61 months(SD 7.62). 48 patients (29.1%) reported 89 previous revisional surgeries: lip revision, posterior pharyngeal flap, and fistula repair were most common. 95 patients (57.58%) required a total of 152 revisional procedures after transfering: palatal lengthening, fistula repair, and lip/nose revisions being most common. 34.78% of patients with repaired clefts presented with moderate to severe articulation errors and 52.17% had hypernasality. CONCLUSIONS: Patients who transition their cleft care can present with a complex variety of previous surgeries requiring multiple revisional procedures. RESEARCH DESIGN A retrospective review was performed of Cleft Team patients greater than six months of age presenting for cleft care from between 2004 and 2014 who previously received care at another institution. Different Cleft Types Reason for Transfer Age at Transfer (months)


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