The Cleft Palate and Craniofacial Institute

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1 The Cleft Palate and Craniofacial Institute St. Louis Children s Hospital One Children s Place St. Louis, MO Lynn Marty Grames, MA, CCC-SLP lynnmg@bjc.org

2 The Cleft Palate and Craniofacial Institute at St. Louis Children s Hospital SLCH: Licensed beds: 258 Employees: 3,000 Medical staff members: 700 Auxiliary members and volunteers: 1,300 Washington University School of Medicine CPCI: CPT, CFT Active patient registry: 2,500 Serving ages: prenatal- 99 Average 150 new referrals annually

3 Team composition Core team members Surgery Albert Woo, MD Medical Director Orthodontics Richard Nissen, DDS, MS, PC Speech Path Lynn Marty Grames, MA, CCC-SLP

4 Team composition Additional regular team members Medical Otolaryngology Nursing Dental Peds Dentistry Allied Health Audiology Psychology

5 Team composition Ancillary team members Medical Genetics Neurosurgery Oral surgery Ophthalmology Dental Prosthodontics Allied Health Social Work Neuropsych

6 22q11.2 clinic Regular team members Medical Plastic Surgery Otolaryngology Nursing Genetics Cardiology Gastroenterology Immunology Dental Orthodontics Peds Dentistry Allied Health Speech Path Audiology Psychology

7 Clinic Meets weekly Patients/families see each specialist + 3D surface imaging Report drafted in EMR Staffing The team meets to discuss recommendations Formulates a treatment plan Defines contact responsibilities Communication Nursing edits/finalizes report in EMR Report distributed according to family s release Interpretive letter to most families

8 General protocol Infancy: EI Age 5: kindergarten Age months: EI Age 6: 1 st grade Age 13 change with puberty Age 3 Early Childhood Age 7: mixed dention Age 15: facial growth Graduation! Age 4: pre K Age 9: ABG plan if needed Age 17 facial growth Facial growth complete

9 Standard 4: Cultural Competence Center for Diversity and Cultural Competence Interpreter, Translator, and Trans-cultural Consultation Services available 24/7/365

10 Standard 4: Cultural Competence Language services available Albanian, American Sign Language, Af-mai-mai, Amharic, Armenian, Arabic, Ashanti, Azerbaijani, Bangla, Bengali, Birundi, Bisaya, Bosnian, Bulgarian, Burmese, Cambodian, Cantonese, Chizigua, Congolese French, Cebuano, Chin, Chitano, Creole, Croatian, Czech, Dari, Dinka, Dzongkha, Estonian, Ewe, Malaryam, Ethiopian, Farsi, Finnish, French, Fulani, German, Gio, Gujarati, Grebo, Greek, Hakka Chin, Hebrew, Hindi, Hmong, Hungarian, Hunsa, Igbo, Indonesian, Japanese, Kannada, Karen, Karreni, Kazak, Khmer, Khrahn, Kinyarwandan, Kirundi, Korean, Krio, Kunama, Kurdish, Italian, Laotian, Latvian, Liberian English, Kinyarmalinga, Mandarin, Mandinka, Malay, Mende, Mongolian, Nepali, Oromo, Pashtu, Polish, Portuguese, Punjabi, Quiche, Romanian, Russian, Saho, Samoan, Serbian, Shanghaisese, Somali, Spanish, Swahili, Sudanese, Tagalog, Taiwanese, Tamil, Tedim,Telagu, Thai, Tibetan, Tigrinya, Tiv, Turkish, Urdu, Uzbek, Vietnamese, Wolof, Yoruba, Zapotec, Zomi

11 Active Research: 18 Current IRB projects Monthly team research meetings 16 platform papers and one poster at the 2013 International Cleft Congress New research and patient outcomes

12 Craniofacial Grand Rounds and Craniofacial Journal Club Cranial Vault Volume in Craniosynostosis Complications in Orthognathic Surgery How to Deflect an Atomic Bomb: Radiation Issues in Pediatric Radiology What Is It With Resonance, Anyway? Functional Anatomy of the Palate Ear Reconstruction Otolaryngology Perspective Neurobehavioral Correlates of Craniosynostosis: Interim Results from the ILP Creating a Superior Patient Experience Through Practicing Healthy Boundaries

13 Community Outreach Nursing: Newborn nursery outreach with posters, manuals, and inservice training Plastic Surgery and ENT: dinner talks for pediatricians, OB/GYNs, donors All professionals: talks at state conventions and professional training programs Those of us who have the privilege of caring for the patients have the responsibility to share information gleaned with our colleagues

14 Referrals New and transfer patients with: Cleft palate/lip craniofacial disorders 22q11.2 DS Handled by the Institute Coordinator: Sybil Scheve, BSN, RN Velopharyngeal Imaging Lab: Non-cleft VPD Rule out VPD Handled by Pediatric ENT dept: Patty Tampow

15 2008: Collaborative Care for Speech Differences in Cleft Palate and Craniofacial Disorders a Continuing Education Program

16 How it works Invitation sent Visit scheduled exchange Reading material sent Templated forms printed

17 The session begins with joint listening tasks Articulations are agreed upon and discussed

18 Begin therapy together Agree on targets Identify techniques Try them together Discuss progression Discuss further goals Map out the plan Discuss home program with family

19 Velopharyngeal management Orthodontics Staying in touch Further surgery Making it work back home

20 What s next? The parent: signs releases for ongoing communication The community clinician: takes brief exam completes survey is given certificate of completion The cleft team SLP: completes ASHA forms completes fee ticket: billable time!

21 100% reported the program was worth the CEUs they received for it

22 100% reported that they would participate again

23

24 Team Standards Standard 1: Team Composition Standard 2: Team Management and Responsibilities Standard 3: Patient and Family/Caregiver Communication Standard 4: Cultural Competence Standard 5: Psychological and Social Services Standard 6: Outcomes Assessment

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