Eye Openers and Study Sessions are now included in registration and are open to all attendees, regardless of registration. Attendees are not guaranteed a spot in their first choice sessions.
Wednesday 7:00 AM
Presenters: Jack Yu, Stephen Conley
Presenter Disclosures: Jack Yu has disclosed the following financial relationships: I receive a stipend from the ACPA as the editor of CPCJ. Jack Yu has no relevant non-financial relationships to disclose. Stephen Conley has disclosed the following financial relationships: Stipend as Associate Editor for Cleft-Palate Craniofacial Journal. Stephen Conley has no relevant non-financial relationships to disclose.
Description: This Eye Opener will be given by members of the ‘Cleft Palate-Craniofacial Journal’ Editorial Board, Section Editors from a variety of disciplines will discuss what constitutes a good scientific manuscript, what kinds of manuscripts are accepted, and what is required by the ‘Cleft Palate-Craniofacial Journal.’ Common problems in manuscript preparation and ways of avoiding them will be addressed. Common problems in manuscript preparation and ways of avoiding them will be addressed.
Learning Objectives: Each learner will be able to prepare a manuscript suitable for submission to scientific journals.
Presenters: Katie O’Brien
Presenter Disclosures: Katie O’Brien has no relevant financial relationships to disclose. Katie O’Brien has no relevant non-financial relationships to disclose. Amy Mckibbin has no relevant financial relationships to disclose. Amy Mckibbin has no relevant non-financial relationships to disclose. Matilda Butson has no relevant financial relationships to disclose. Matilda Butson has no relevant non-financial relationships to disclose. David Fitzsimons has no relevant financial relationships to disclose. David Fitzsimons has no relevant non-financial relationships to disclose.
Description: It is well known that children with cleft palate and other craniofacial anomalies are at increased risk of hearing loss and ear disease, which if left undiagnosed or untreated can negatively impact speech and language performance, as well as academic and social development. While the Audiologist’s role in providing regular assessment of hearing is both recognized and well documented within the ACPA’s parameters of care documentation, the nature of the assessments conducted and the implications of the results are typically not well understood by other members of the cleft and/or craniofacial team. This eye-opener will provide a thorough overview of the comprehensive battery of hearing testing applicable to infants and children with cleft and/or craniofacial anomalies. The presentation will detail the appropriate tests to be used for children at different ages, including the clinical indications and contra-indications to performing these tests, as well as the test limitations. The presentation will also provide information on how attendees can best interpret hearing test results in their clinic, in order to better understand and treat patients in their care. The common ‘red-flags’ for concern about a patient’s hearing will also be discussed.
Learning Objectives: Participants will obtain a thorough understanding of the typical tests performed by a cleft and/or craniofacial team Audiologist, including VROA, play audiometry, and tympanometry. Participants will be able to interpret a standard Audiology report and understand the clinical urgency and the clinical implications of the results.
Presenters: Iris Sageser, RDH, MS, Sheldon Polonsky, BA, MA, MD
Presenter Disclosures: Iris Sageser has no relevant financial relationships to disclose. Iris Sageser has no relevant non-financial relationships to disclose. Sheldon Polonskyhas no relevant financial relationships to disclose. Sheldon Polonsky has no relevant non-financial relationships to disclose.
Description: This interactive eye opener will be given by a physician analyst in the Chief Medical Information Office of a large pediatric hospital. The presenter has over 15 years of Epic Experience as an analyst and programmer and has extensive experience in Epic multi-disciplinary team documentation. He serves as the primary clinical Epic consultant for documentation tools for this hospital’s Cleft and Craniofacial Team as well as most of its ambulatory divisions. Topics of discussion will include 1) an overview of Epic documentation and data entry, 2) compiling multi-provider notes into a team report/letter, 3) challenges for multidisciplinary reports/letters,4) using doc flowsheets in multidisciplinary settings, and 6) time permitting, discussion of other data entry techniques and sharing in Epic
Learning Objectives: 1. The learners will be able to apply Epic specific tips to their patient and cleft/craniofacial team documentation.
Presenters: Raymond Tse, David Fisher
Presenter Disclosures: Raymond Tse has no relevant financial relationships to disclose. Raymond Tse has no relevant non-financial relationships to disclose. David Fisher has no relevant financial relationships to disclose. David Fisher has no relevant non-financial relationships to disclose.
Description: ‘The first time is the best time’. Favorable initial cleft lip and nose repair is critical in providing patients with optimal long-term form and function. Current ‘cut as you go’ techniques of cleft lip repair rely heavily on the abilities and experience of surgeons and the myriad of variations reflects the free form nature of those repairs. The lack of more defined methods can make cleft lip repair intimidating for new surgeons and can result in variability of outcomes for more experienced surgeons. The ‘Anatomic Subunit Approximation Approach’ to cleft lip repair relies upon anatomic landmarks and anatomic subunits in the design of a cleft lip repair. It involves careful measurement and includes ways to check and recheck the design to help surgeons achieve favorable form. Studies have demonstrated optimal results without the learning curve that other techniques require. Because the approach is based on landmarks, it inherently adapts to all presentations. While the technique has been widely adopted, the many landmarks and measurements make it seem complex. The purpose of this session is describe the Anatomic Subunit Approximation approach to cleft lip repair and demonstrate how it adapts to various presentations to produce favorable results. We will use step by step explanations to illustrate and clarify the approach. We will use case examples that span the spectrum of presentations from complete to microform clefts. We will describe ways to verify and adapt the repair for final tailoring so that there is some flexibility in final repair. We will use a combination of photos, videos, illustrations, and discussions to ensure that attendees benefit from the session. Even if more experienced surgeons do not adopt the technique, an understanding of the approach can help with the non-overt landmarking that occurs with cut-as-you-go repairs. Careful planning makes for accurate and efficient repair and that ultimately benefits our patients!
Learning Objectives: Each learner will be able to plan a cleft lip repair that produces favorable balance, symmetry, and form. Each learner will be able to correct the cleft lip nasal deformity as a part of primary cleft lip repair.
Presenters: Michael Lypka, Derek Steinbacher, Heather Hendricks, Zarmina Ehsan, Jill Arganbright
Presenter Disclosures: Michael Lypka has no relevant financial relationships to disclose. Michael Lypka has no relevant non-financial relationships to disclose. Derek Steinbacher has no relevant financial relationships to disclose. Derek Steinbacher has no relevant non-financial relationships to disclose. Heather Hendricks has no relevant financial relationships to disclose. Heather Hendricks has no relevant non-financial relationships to disclose. Zarmina Ehsan has no relevant financial relationships to disclose. Zarmina Ehsan has no relevant non-financial relationships to disclose. Jill Arganbright has no relevant financial relationships to disclose. Jill Arganbright has no relevant non-financial relationships to disclose.
Description: In many institutions, mandibular distraction has become the primary management of the neonate with a hypoplastic mandible and respiratory compromise. A multidisciplinary team approach is necessary to identify neonates who might benefit from the procedure and manage the patient after the procedure. Many of the parameters for patient selection and follow-up are controversial, with varying imaging, airway, and sleep evaluations. Complications can arise during or after the procedure, both early and late. Growth is unpredictable and must be followed long term. The purpose of this course is to discuss the comprehensive multidisciplinary approach to mandibular distraction in patients with Pierre Robin Sequence, including patient selection and work-up, technical aspects of the operation, management of complications, and long term follow-up. With a panel consisting of a craniofacial surgeon, otolaryngologist, sleep physician, orthodontist, and moderator, the course will explore a series of cases of Robin Sequence, with audience participation encouraged. Work-up, including airway and sleep evaluation will be discussed, surgical technique, including management of complications, will be addressed, and long term follow up with orthodontic considerations will be touched upon.
Learning Objectives: Each learner will be able to select the appropriate patient for mandibular distraction and understand the work-up involved in this decision-making. Each learner will be able familiar the long term follow-up of these patients and the importance of a multidisciplinary approach.
Presenters: Brenda Louw, D.Phil., Linda Vallino, PhD
Presenter Disclosures: Brenda Louw has disclosed the following financial relationships: I am a salaried employee of East Tennessee State University, Johnson City, TN. Brenda Louw has disclosed the following non-financial relationships: I am a member of the ACPA and ASHA SIG 5 Craniofacial and Velopharyngeal Disorders.I am a well published researcher with a specific interest in CLP and young adults with CLP, Employed as a professor in the Dept. Audiology and Speech -Language Pathology, East Tennessee State University Professor Emeritus, University of Pretoria, South Africa. Linda Vallino has disclosed the following financial relationships: Dr. Vallino receives a salary as Head, Craniofacial Outcomes Research Laboratory/Senior Speech Scientist Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE. She is also: Clinical Professor of Pediatrics, Jefferson Medical College Adjunct Associate Professor, University of DelawareDr. Vallino is co-author of Evaluation and Management of Cleft Lip and Palate: A Developmental Approach. (with Dr. David Zajac). Dr. Vallino is co-author of Evaluation and Management of Cleft Lip and Palate: A Developmental Approach (with Dr. David Zajac). Linda Vallino has disclosed the following non-financial relationships: Dr.Vallino is an internationally recognized scholar with extensive publications and expertise in the field of Cleft Lip and Palate . She has a specific interest in young adults with CLP, Dr. Vallino is : Head, Craniofacial Outcomes Research Laboratory/Senior Speech Scientist Nemours/Alfred I. duPont Hospital for Children Clinical Professor of Pediatrics, Jefferson Medical College Adjunct Associate Professor, University of Delaware.
Description: Traditionally cleft palate team services end abruptly at age 18 and young adults and their parents need to navigate a different treatment future. The young adult with cleft lip and palate (CLP) must begin the transition from child-centered to adult-centered care in which the person must depend on community health care professionals for help. This transition is not always easy. The literature on the transition of care in other health-care disciplines for young adults with chronic health conditions receiving continuation of care (i.e., cerebral palsy, diabetes, spina bifida) is replete. Although the topic of transition of care is especially relevant to the young adult with CLP who inevitably will transition from the pediatric interdisciplinary team to community-based services, or adult-centered-interdisciplinary team, such research is virtually nonexistent (Vallino & Louw, 2017). Over the past 15-20 years, there has been a paradigm shift in evaluating health care outcomes of young adults with CL/P (Zajac & Vallino, 2017) using QOL and health-related quality of life (HRQOL) as outcome measures. The most widely recognized conceptual framework for describing the impact of a disorder is the World Health Organization’s International Classification of Functioning, Disability, and Health (ICF) (WHO, 2001). The ICF represents a shift from health condition and body impairment-centered descriptions of disability to a more comprehensive documentation, including a wider range of functionality indicators of which communication is but one. The emphasis is on self-report rather than clinician report to gain a holistic perspective of function. THE ICF guides person-centered assessments and goal setting (ASHA, nd). The aim of this presentation is to propose an evidence-based conceptualized model for the transition of care for young adults with CLP, within the ICF framework. We will describe the needs of young adults with CLP. A person-centered service delivery model incorporating QOL and HRQOL into the ICF framework will be presented. The transition of care for young adults with CL/P necessitates a change in perspective and embracing constructs such as person centered care and the ICF (WHO, 2001) framework in order to ensure the best outcomes for young adults with CL/P. We will present an overview of the young adult with CLP and their multidisciplinary needs. An evidence-based service delivery model for transition of care for the young adult with CLP will be described that considers the components of the ICF model and concepts of QOL. Assessments and protocols for assessing the domains of the ICF, namely health and functional status will be described. The purpose of this proposed model is to provide a framework for redesigning the way services are delivered to a young adult with CLP. The concepts of this model are relevant to all specialists on the cleft palate team. We will suggest strategies for teams to improve the care for young adults with CLP.
Learning Objectives: As a result of this activity, the participants will be able to describe the characteristics and needs of young adults with CLP, discuss the model of transition of care for the young adult with CL/P, and extrapolate strategies that their teams could use to improve the care of young adults with CLP.
Presenters: Pablo Antonio Ysunza, MD, PhD
Presenter Disclosures: Pablo Antonio Ysunza has no relevant financial relationships to disclose. Pablo Antonio Ysunza has no relevant non-financial relationships to disclose.
Description: At the present time most cleft palate centers around the world are in agreement that surgical procedures aimed to correct velopharyngeal insufficiency (VPI) should be performed according to imaging procedure (s). The controversy lies in which procedure or procedures should be used for surgical planning, that is, should the procedure be planned according to data provided by videonasopharyngoscopy (VNP) or videofluoroscopy (VF) or both. The interpretation of imaging procedures is variable leading to possible false positive/negative findings affecting treatment recommendations. If not recorded with sound, the value of the study is questionable. Intra observer reliability of the interpretation of imaging procedures for assessing velopharyngeal function can be extremely low when the procedures are not recorded with sound. Disagreement in interpretation of the studies can occur in approximately half of the cases (48%) and it has been reported that disagreements affect treatment decisions in over 90% of the cases. Group reviews result in consensus agreement. Efficacy of the imaging procedures can be measured by surgical outcomes for velopharyngeal insufficiency. Frequently imaging studies, especially VNP procedures performed in the office lack sound recording. The inability to review completed studies is unacceptable. To describe the clinical information which can be provided by VF and that cannot be provided by VNP and vice versa. Also the aspects of radiation dosage during VF as well as compliance and tolerance or comfort during both procedures will be addressed. The attendants will be able to learn how to perform VF with a minimal radiation dose while obtaining the clinical information about velopharyngeal anatomy and physiology during speech and swallowing. The attendants will also be able to learn techniques for enhancing compliance and maximizing the efficiency of VNP for the assessment of the velopharyngeal sphincter during speech. The controversy concerning the use of VNP or VF or both will be discussed based on hard data which have been collected from hundreds of cases in the last 7 years. The methodology for performing an effective and useful VF and VNP will be presented and discussed. Data from radiation dosage, planes and views to be used, radiologic anatomy and actual size measurements during VF will be presented and discussed. Also, data concerning techniques for enhancing compliance, anatomy and physiology data to be collected and reported during VNP will be presented and discussed. The use of the data and measurements provided by VNP and VF for planning surgical procedures aimed to correct VPI will be discussed by showing examples of preoperative planning and postoperative outcomes. The possible complications of the surgical procedures and different methods aimed to avoid them will be presented and discussed through the analyses of difficult cases.
Learning Objectives: The attendants will be able to learn how to perform VF with a minimal radiation dose while obtaining the clinical information about velopharyngeal anatomy and physiology during speech and swallowing. The attendants will also be able to learn techniques for enhancing compliance and maximizing the efficiency of VNP for the assessment of the velopharyngeal sphincter during speech.
Presenters: John Van Aalst, MD, Usama Hamdan, MD FICS, Haithem Elhadi Babiker, MD
Presenter Disclosures: John van Aalst has no relevant financial relationships to disclose. John van Aalst has no relevant non-financial relationships to disclose. Usama Hamdan has no relevant financial relationships to disclose. Usama Hamdan has no relevant non-financial relationships to disclose. Haithem Elhadi Babiker has no relevant financial relationships to disclose. Haithem Elhadi Babiker has no relevant non-financial relationships to disclose.
Description: The Middle East and North Africa (MENA) have a combined population of 700 million with an annual birth of at least 14,000 patients with clefts. Given the political turmoil in the region, there are multiple subpopulations, where even the most rudimentary pieces of cleft care are not present, suggesting that the numbers of untreated, or inadequately treated, patients have already out-pacing the capacity of regional providers to care for these patients. This presentation will 1) Assess the cleft landscape of MENA, 2) Provide an overview of current work being done in the region, 3) Identify potential solutions to the shortfalls of current strategies, 4) Develop mechanisms to improve the quality of cleft care delivered in the region, and 5) Provide a roadmap for future regionalization of cleft care. Strategies for building cleft care capacity in MENA must start with individual volunteer trips, then grows to incorporate local team development, and must also broaden into regional strategies to improve access to care for patients with clefts and their families. When preparing for individual volunteer trips, the following scheme is utilized: 1) Pre-screening of hospital capacities including the presence of an intensive care unit, 2) Clear communication with local partners, 3) Pre-operative evaluation of all patients by all team members, including, but not limited to, pediatricians, anesthesiologists, speech and language pathologists, and surgeons; 4) Clear decision making that the operation for each child is the correct operation at the right time, 5) Standard algorithms for care pre-, intra-, and post-operatively; 6) Appropriate monitoring of patients during recovery and through discharge, 7) Timely discharge with appropriate follow-up, 8) Routine re-evaluation of the quality of outcomes; 9) Developing a standard process for morbidity and mortality discussions, 10) Identifying metrics for outcomes, including, but not limited to, quality of lip repair, adequacy of bone grafting, and speech outcomes, and 11) Instituting a database to track these metrics. Individual volunteer trips must transition to local team development. These teams should conduct their cleft work with algorithms that emphasize safety and high-quality outcomes. This work must then transition to identification of regional centers where cleft care may best be delivered, and to develop mechanisms for these reginal centers to communicate with each other in order to develop an overall strategy for MENA. The co-authors will present the results of a combined 45 years’ experience with cleft work in MENA, and share insights about how to address these methodological items, all with the intent of improving cleft care within MENA. In sum, sustainable improvements in cleft care must start with safety, attention to detail, a strong will to teach, and providing local and regional strategies to improve cleft care in MENA.
Learning Objectives: This presentation will 1) Assess the cleft landscape of MENA, 2) Provide an overview of current work being done in the region, 3) Identify potential solutions to the shortfalls of current strategies, 4) Develop mechanisms to improve the quality of cleft care delivered in the region, and 5) Provide a roadmap for future regionalization of cleft care.
Presenters: Alison Kaye, Shao Jiang
Presenter Disclosures: Alison Kaye has no relevant financial relationships to disclose. Alison Kaye has no relevant non-financial relationships to disclose. Shao Jiang has no relevant financial relationships to disclose. Shao Jiang has no relevant non-financial relationships to disclose.
Description: Congenital facial clefting involving the lip and/or palate are some of the most common birth defects worldwide, with an average incidence of 1:750 live births. These children may or may not have coincident syndromes and/or other associated medical problems. In some countries these children are frequently abandoned or put up for adoption due to the burden of their medical care, or stigma associated with a birth defect. As a result, cleft teams often see an influx of children with cleft conditions originating from other countries who may or may not have already had surgery or other interventions. There may be limited information available about their previous care or associated problems. Helping adoptive families understand their child’s condition and establish a comprehensive care plan is the ultimate goal. Determining exactly what these children’s needs will be can be very challenging for Cleft Team members. There may also be other unexpected medical, genetic, speech and language, or behavioral issues that may further impact their care. This interactive workshop will familiarize participants with the special needs adoption process including family requirements, time tables, and costs. Understanding the pre-adoption experiences and child selection process for these families is invaluable. Case examples will be used to highlight challenging surgical and medical situations with which these patients frequently present. This includes previous surgeries, typical and atypical developmental delays, language acquisition, common infections, and a variety of nutritional inadequacies. Recommendations will be made regarding initial medical assessment and surgical timing for these children after adoption. Differences in outcomes compared to native populations will also be discussed. Preparing families and Team members for any additional challenges these children may present with can help everyone work more effectively together to obtain optimal outcomes for these patients.
Learning Objectives: Each learner will be able to describe the requirements and time frame for international special needs adoptions. Each learner will be able to describe 3 unique challenges presented by internationally adopted children with congenital clefting conditions.
Presenters: Richard E. Kirschner, MD
Presenter Disclosures: Richard Kirschner has no relevant financial relationships to disclose. Richard Kirschner has no relevant non-financial relationships to disclose.
Description: When it comes to excellence in guest service, employee engagement, leadership, and business practice, the corporation founded by Walt Disney is second to none. Much has been written about ‘the Disney way,’ and many businesses have adopted the entertainment giant’s strategies to achieve operational and financial success. Less well appreciated are the ways in which the Disney culture can be successfully instilled into healthcare teams and the compelling rationale for doing so. This presentation will demonstrate how Disney’s strategies can be successfully implemented by team leaders in order to transform the team care experience for providers, patients and families. This interactive, multimedia presentation will clearly illustrate how the same values and principles of leadership, customer service, cast member engagement, and innovation that put the magic in the Magic Kingdom can fundamentally transform the culture of your team while improving outcomes and creating memorable experiences for team members and the families that they serve.
Learning Objectives: Attendees will be able to discuss how Disney values and strategies can be successfully adopted to transform team culture, experience, and outcomes.
Thursday 7:00 AM
Presenters: Kamlesh B. Patel, MD, MSc
Presenter Disclosures: Kamlesh Patel has disclosed the following financial relationships: Consultant for Stryker CMF and Speaker for Hanger and Orthomerica. Kamlesh Patel has no relevant non-financial relationships to disclose.
Description: Unilateral cleft lip nasal deformity is not a malformation, but rather a distortion caused by the labial cleft. The stigmata of the cleft lip nasal deformity includes: deviation of the tip and caudal septum to the non-cleft side, dislocated lower lateral cartilage, obtuse angle between middle and lateral crura, posterior-laterally displaced alar base, and short columella on the cleft side. The aim is to describe six components of the cleft nasal deformity, comparing normal anatomy to cleft anatomy. Anatomic studies related to normal and cleft nasal anatomy will be presented. The lecture will focus on the following components of the nose: Nasal bones, Septum, Piriform, Alar base/Nasal sill, Upper lateral cartilages, Lower lateral cartilages. Based on anatomic principles, surgical approaches to correct each of the individual components of the cleft nasal deformity will be shown. Outcome studies of various maneuvers used in primary correction of the cleft nasal deformity will be reviewed. CONCLUSIONS: Primary correction of the cartilaginous and soft tissue components of the cleft nasal deformity can be performed safely. The key steps are to secure the alar base, incise the piriform ligament to release the tail of the lateral crus, elevate the lower lateral cartilage with interdomal and intercartilaginous sutures, and efface the lateral vestibule.
Learning Objectives: Audience members will understand the anatomic components of the Unilateral cleft lip nasal deformity. They will also be able to understand the aims and methods of primary surgical correction.
Presenters: Jamie Idelberg, Celia Heppner
Presenter Disclosures: Jamie Idelberg has no relevant financial relationships to disclose. Jamie Idelberg has no relevant non-financial relationships to disclose. Celia Heppner has no relevant financial relationships to disclose. Celia Heppner has no relevant non-financial relationships to disclose.
Description: An overview of the team approval application and review by the Commission on Approval of Teams (CAT) will be presented. This session will help to demystify the team approval process by reviewing the application Standard by Standard. Helpful hints on how to confidently prepare to fill out the application will be provided. Any specific questions that team coordinators or members might have about the application process are welcome, making for a lively, interactive presentation.
Learning Objectives: Each learner will be able to identify and use key requirements for team approval.
Presenters: Margy Maroutsis
Presenter Disclosures: Margy Maroutsis has no relevant financial relationships to disclose. Margy Maroutsis has no relevant non-financial relationships to disclose.
Description: Background and Purpose: One of the common obstacles to the comprehensive care of the cleft and craniofacial patient is obtaining adequate insurance coverage for orthodontic treatment. My goal is to present the important process that needs to be followed by orthodontic teams when submitting treatment plans to a medical carrier in order to obtain insurance coverage for these patients. It is common for orthodontists and their staffs to not use the appropriate language that an insurance company needs in order to understand why orthodontic therapy is essential to the overall medical plan. Description: Medical Insurance companies have a strict criteria regarding coverage for orthodontic treatment. Appropriate knowledge and documentation when submitting insurance claims is critical. Most orthodontic practices are unfamiliar with the medical coding, language and ‘the small print’ of medical and dental insurance plans to successfully submit for medical necessity. This course, taught by a Craniofacial Orthodontic Administrator with over 30 years of experience working with private insurance companies, will guide you through the steps to take when submitting your orthodontic treatment plan for consideration of medical reimbursement.
– Identifying Coverage (medical or dental)
– Submission of Letter of medical necessity
– Correct coding using CPT and ICD 1
– Appealing Denials
Learning Objectives: – Each participant will be able to identify key criteria for writing a letter of medical necessity – Each participant will be able to review a patie’s insurance plan and point out what is covered and what is not covere – Each participant will be able to address denials and know the steps to take to help overturn a denial.
Presenters: Iris Sageser, RDH, MS, Amanda Smith, RN, BSN-CPN, Melisande Ploutz, RN, MS, CPNP, Patricia Chibbaro, RN, MS, CPNP, Noreen Clarke, RN, MSN, CNS
Presenter Disclosures: Iris Sageser has no relevant financial relationships to disclose. Iris Sageser has no relevant non-financial relationships to disclose. Amanda Smith has no relevant financial relationships to disclose. Amanda Smith, has no relevant non-financial relationships to disclose. Patricia Chibbaro has no relevant financial relationships to disclose. Patricia Chibbaro has no relevant non-financial relationships to disclose. Noreen Clarke has no relevant financial relationships to disclose. Noreen Clarke has no relevant non-financial relationships to disclose.
Description: This interactive study session is for Team coordinators, nurses, or professionals interested in learning more about care coordination for cleft/craniofacial teams. Four nurses/care coordinators, representing four cleft/craniofacial teams, will each discuss an aspect of care coordination for the patient. Care coordination of a child with a cleft or craniofacial abnormality is multi-faceted and at times complicated. Topics of discussion will include 1) the prenatal visit with team providers and preparing couples for the birth of their baby, 2) feeding protocol for infants with a cleft, 3) serving a culturally diverse population, and 4) working with interdisciplinary team members to deliver comprehensive care to medically complex children/families with cleft and craniofacial diagnoses.
Learning Objectives: 1. Learners will identify special coordination considerations of medically complex cleft and craniofacial patients. 2. Learners will gain awareness of cultural differences that impacts care coordination. 3. Learners will demystify feeding recommendations for babies with cleft lip/palate through multi-collaboration. 4. Learners will identify prenatal practices that support the child/family.
Presenters: Susan Starling Hughes, MS, Alison Kaye, MD
Presenter Disclosures: Susan Hughes has no relevant financial relationships to disclose. Susan Hughes has no relevant non-financial relationships to disclose. Alison Kaye has no relevant financial relationships to disclose. Alison Kaye has no relevant non-financial relationships to disclose.
Description: Approximately 30% of individuals born with clefting anomalies have an underlying genetic syndrome and are therefore more medically complex than an individual with an isolated clefting anomaly. A unifying diagnosis can have a direct impact on medical management, but often times the answer may elude healthcare providers for years. The diagnostic odyssey is a well-known concept to genetic providers: Medically complex patients will undergo multiple clinical evaluations and diagnostic studies over time, only to still not identify a definitive diagnosis. In addition to being time consuming and expensive, this journey is emotionally exhausting for families. Traditionally, chromosomal microarray and single gene analyses have been used to identify pathogenic variants associated with common syndromes. With the introduction of whole exome sequencing (WES), the diagnostic hit rate is increasing, while the time to obtain a diagnosis is decreasing. WES has demonstrated this powerful clinical impact, while maintaining cost-effectiveness. There are many limitations to WES, including variant interpretation. WES has become a useful tool in other patient populations, such as the individual with severe intellectual disability, and is being recommended as the first-line diagnostic test. Here, we explore the role WES currently plays in the syndromic clefting population and how this innovative technology can change the way we manage our patients. This session will focus on reviewing the concept of the diagnostic odyssey and its effect on patient care and families. This lecture will demonstrate and promote understanding of the current technologies for genetic testing, focusing on WES. A variety of specific case examples from our institution will be presented to emphasize the value of incorporating WES to improve the overall healthcare provided by the interdisciplinary team.
Learning Objectives: Each learner will understand the unique clinical impact of the diagnostic odyssey for the medically complex patient. Learners will be able to delineate between different genetic testing modalities. Learners will define the benefits and limitations of WES, when utilized in the medically complex individual with clefting.
Presenters: Kelly Cordero, PhD, CCC-SLP, Catherine Crowley, Lynn Fox, MA, Med
Presenter Disclosures: Kelly Cordero has disclosed the following financial relationships: I receive a full-time salary at Barrow Cleft and Craniofacial Salary. Until 6/30/17 I received funding as a rater for NIDCR funded grant ‘An inter-center comparison of speech outcomes: The Americleft project.’ Honorarium from ASU Women in Philanthropy Grant for participation in Cleft/Craniofacial feeding certificate modu. Kelly Cordero has disclosed the following non-financial relationships: Member of Americleft Task Force (now inactive). Catherine Crowley has no relevant financial relationships to disclose. Catherine Crowley has no relevant non-financial relationships to disclose.
Description: Cleft palate and craniofacial teams treat individuals from increasingly diverse backgrounds, including refugees or immigrants, international adoptees, and patients treated abroad. In these cases speech assessment and surgical decision-making related to velopharyngeal dysfunction (VPD) can be affected by additional factors including late cleft palate repair, lack of past speech therapy services, and developmental concerns due to orphanage care, among others. ASHA SIG 5, Craniofacial and Velopharyngeal Disorders, offers this eye opener session of challenging cases to ACPA attendees. The authors will first present an overview on assessment and treatment of articulation and resonance in patients from diverse backgrounds, including refugees/recent immigrants, international adoptees, individuals from multilingual backgrounds, and those treated abroad. Case studies with audio-visual support will be utilized to illustrate these areas. Specifically the presenters will describe the speech assessment process for individuals who do not speak English or the language of the examiner, including the importance of determining difference versus disorder and the optimal use of interpreters. Surgical timing for individuals who are internationally adopted considering both psychosocial and language learning factors will be addressed for typical cases and for those when development has been significantly affected by orphanage time or other conditions. Complications in surgical timing for individuals with migrant status, differing cultural beliefs about surgery, lack of early surgery and/or access to speech therapy will also be addressed. Audience participation and sharing will be encouraged.
Learning Objectives: Participants will be able to: (1) describe culturally and linguistically appropriate assessment approaches for patients with cleft palate/VPD (2) describe how late cleft palate repair and/or lack of past speech therapy may affect future VPD surgical management decisions (3) describe the role that orphanage care may have on development and communication and the impact on management of VPD.
Presenters: Michael Lypka
Presenter Disclosures: Michael Lypka has no relevant financial relationships to disclose. Michael Lypka has no relevant non-financial relationships to disclose.
Description: Patients with cleft lip and palate require a multidisciplinary approach to care and management of the alveolar cleft in these patients is no exception. While some centers perform gingivoperiosteoplasty, or even bone grafting at the time of lip or palate repair, the majority perform alveolar bone grafting in the mixed dentition phase before the eruption of the permanent canine. Yet, not all alveolar clefts are the same, nor do patients always present at the ideal time, and many require novel strategies to achieve successful outcomes. The purpose of this presentation is to discuss the management of the patient with the ‘difficult’ alveolar cleft, meaning those patients who may require alternatives techniques to achieve a successful bone graft. The goals of alveolar cleft repair will be discussed, including the rational for particular timing of surgery. The basic surgical technique of closing and grafting an alveolar cleft will be touched upon, but more complex cases will be highlighted, including advanced methods for closure, such as segmental osteotomies, distraction osteogenesis, and orthognathic surgery. The presentation will be case-based with photographic and video descriptions.
Learning Objectives: Each learner will understand the optimal timing of alveolar cleft repair and basic technique. Each learner will understand basic and advanced methods of closing and grafting alveolar clefts.
Presenters: Martin Persson, Magnus Becker
Presenter Disclosures: Martin Persson has no relevant financial relationships to disclose. Martin Persson has no relevant non-financial relationships to disclose. Magnus Becker has no relevant financial relationships to disclose. Magnus Becker has no relevant non-financial relationships to disclose.
Description: When it comes to children and adolescents with a cleft, studies have reported poorer performance trajectories in educational settings for individuals with a cleft in comparison to their otherwise healthy peers. Currently, the resources in our health care system are quite varied, and the demand on resources is increasing rapidly. This result in those individuals with cleft does not get the access to the necessary care provision, especially when it comes to screening for diagnostics or treatment implications that can have a negative impact on their education. At the same time, it is advised that cleft teams should be monitoring cognitive and educational status. Therefore, the purpose of a European collaboration was to develop a functional training program that can be used as the initial screening process by healthcare professionals. The goal of the presentation is to give the attendees an understanding of the developed material and how they can access it for free. The session will describe the IHEM training program in detail and how to implement in a clinical setting. This will include the theoretical background and the developed training modules for the healthcare professionals: – Psychosocial factors and processes associated with cleft – The potential impacts on educational outcomes – Promoting Resilience – Facilitating empowerment in families affected An overview of the developed information material for healthcare professionals and families will be presented together with the developed pedagogical and implementation guidelines. The aim of this project has been to develop a training package for those healthcare professionals with limited or no access to psychological experts concerning the medical and psychosocial variables that can influence educational achievement in children with cleft. Healthcare professionals can be trained to deliver this information to the parents of the children with clefts. In this way, the parents are helped to recognize behavioral symptoms and other psychosocial aspects that could negatively influence educational outcomes in their children. Parents are encouraged to feedback their observations and concerns to the health professionals in a systematic way. An initial screening of the educational status has been achieved.
Learning Objectives: As a result of this session the learner will be able to comprehend and apply the following: – Why it is important to understand how cleft can be related to negative educational outcomes. – How to engage in a conversation with the parents about the medical and psychosocial variables that can influence educational achievement. – How to conduct an initial screening for educational outcomes.
Presenters: Liza Beilke, Caitlin Giesen, Jo Artz, Anna Thurmes
Presenter Disclosures: Liza Beilke has no relevant financial relationships to disclose. Liza Beilke has no relevant non-financial relationships to disclose. Caitlin Giesen has no relevant financial relationships to disclose. Caitlin Giesen has no relevant non-financial relationships to disclose. Jo Artz has no relevant financial relationships to disclose. Jo Artz has no relevant non-financial relationships to disclose. Anna Thurmes has no relevant financial relationships to disclose. Anna Thurmes has no relevant non-financial relationships to disclose. Wendy Looman has no relevant financial relationships to disclose. Wendy Looman has no relevant non-financial relationships to disclose.
Description: Cleft and craniofacial teams are in a unique position to facilitate parent-to-parent connections among the families they serve. Research evidence and anecdotal experience indicate that parents of children with craniofacial conditions want to talk with other parents who have ‘walked in their shoes’; yet existing processes and concerns for maintaining confidentiality can make providers wary of helping parents to connect with one another outside the clinic setting. As a quality improvement initiative, our clinic implemented a parent-to-parent mentoring program to overcome these barriers and promote evidence based practice in this area. The process of a parent-to-parent support program relies on many components that must be intentionally developed and implemented, including informing parents of the program, training mentors, maintaining confidentiality and boundaries, matching parents, and providing follow-up. The general goal for this presentation is to share our experience with developing and implementing a cleft and craniofacial clinic parent-to-parent mentor program, and to disseminate initial findings from the program’s pilot phase. This includes a discussion of program successes, challenges, outcomes, and implications for use at other organizations. In this presentation we will describe the key components of our parent-to-parent program, including the needs assessment, implementation, and preliminary evaluation data. We will present strategies for parent mentor selection and training, a web-based enrollment and registration portal, evidence-based matching of mentors and mentees, and automated data collection for ongoing evaluation. We will share lessons learned and opportunities for translating the program to other settings. The presentation will include an interactive component to allow the audience to explore how they might implement a similar program in their organization.
Learning Objectives: Following this presentation, learners will: 1. identify components of a successful parent-to-parent support program. 2. identify challenges associated with the implementation of a parent-to-parent support program. 3. apply concepts from this presentation to their own organizations. 4. summarize key findings from this quality improvement initiative.