Urologic Congenitalism International Summit

Transcription

1 Urologic Congenitalism International Summit May 15 16, 2018 Weinberg Family Conference Center, Q1 300 Course Co Directors: Hadley Wood, MD and Dan Wood, MD PhD Copyright 2018 The Foundation. All Rights Reserved.

2 BACKGROUND AND SIGNIFICANCE The genitourinary tract is one of the systems most frequently affected by congenital defects. Such defects can be solitary (eg, hypospadias) or involve multiple organ systems (eg. myelodysplasia). In addition, patients with neurological conditions of childhood like cerebral palsy (CP) and neuromuscular diseases often have substantial urological comorbidity that is progressive with ageing. For a small subset of this group (eg, exstrophy), the urologist is often the most knowledgeable care provider about the patient s condition, anatomy, and long term medical risks. As such, the urologist may serve an important role in facilitation of primary care for some of these individuals. Traditionally, the pediatric urologist has served this population throughout his/her life. Pediatric urologists are well equipped to do so with their knowledge and experience with congenital anatomy, their lifelong relationships with the patients and families, and focus on integrative care. However, as these patients now are surviving to adulthood with excellent health, issues of sexuality, post pubertal genital appearance and function, urinary and fecal incontinence, and fertility and pregnancy are becoming important health and quality of life issues. These issues largely fall outside the spectrum of pediatric urological practice. Moreover, with aging and development of other medical comorbidities, patients with congenital anomalies experience typical urological age related problems (like BPH and prostate cancer) that are often more complicated by their coexisting anomalies and prior operations. The field of urological congenitalism requires a knowledge base and skill set that brings together assets of both pediatric and adult urology for this unique and underserved population of patients. The costs associated with non transition of this population are both financial and human. Human costs include lost productivity of caregivers of persons with disabilities, as well as lost productivity of the patients themselves. Caregivers of myelomeningocele patients reported a reduced productivity of hours per week. 1 Financial costs to the health care system, although poorly quantified, are substantial. These come in the form of increased costs of reactive as opposed to preventative care, increased morbidity of disease, and increased utilization of costly emergency services. Estimates suggest that 34 47% of admissions for adult myelomeningocele patients are for potentially preventable conditions, including urinary tract infections and wound problems. These estimates amount to approximately $364M over a 2 year period. 2,3 In an era of ever expanding costs focused, preventative care of this population will reduce the financial burden on the healthcare system and improve overall quality of life for patients. The challenges to caring for patients with complex conditions are amplified in emerging economies, where access to health care technologies, personnel and disposable resources (eg, catheters, ostomy appliances) are amplified. Cultural differences also substantially impact both the prevalence of congenital anomalies in the population and the expectations and opportunities for patients with congenital diseases to live a full adult life. The purpose of this summit is to bring together specialists across the globe who care for congenital urological patients in adult life and to begin to define their needs and optimize their health. 1 Tilford JM, Grosse SD, Goodman AC, Li K. Labor market productivity costs for caregivers of children with spina bifida: a population based analysis. Med Decis Making Jan Feb;29(1): Kinsman SL, Doehring MC. The cost of preventable conditions in adults with spina bifida. Eur J Pediatr Surg Dec;6 Suppl 1; Dicianno BE, Wilson R. Hospitalizations of adults with spina bifida and congenital spinal cord anomalies. Arch Phys Med Rehabil Apr;91(4):

3 OBJECTIVES 1. To bring together an international, multidisciplinary faculty of medical professionals caring for patients with congenital genitourinary diseases across the continuum of their lives (eg, pediatric urologists, neurourologists, reconstructive urologists, nephrologists, physiatrists, neurologists, gynecologists, psychological professionals, etc.). 2. To engage the community in developing and promulgating technical solutions to diagnostic and operative issues encountered in adult life. 3. To share solutions to problems encountered with healthcare systems to improve delivery of high quality care for adult patients with congenital genitourinary diseases. 4. To share best practices in implementation of transition programs, and measuring outcomes for transition. DESCRIPTION This will be a non CME accredited, 2 day course open to all individuals with interest in this arena. To encourage participation, faculty stipends will be provided to partially support travel and expenses to Cleveland. The Faculty will represent diverse geographic and technical backgrounds, including respected top leaders in this specialty from 6 of the 7 continents. In addition, the founder of the field of congenital urology, Professor Christopher Woodhouse, has agreed to participate. The first day will consist of lectures and Q&A on specific multidisciplinary topic areas that overlap with urological congenitalism. The second day will consist of case based and video enhanced presentations and roundtable management discussions by specialists on the topic. This course represents a one of a kind opportunity to bring together a broad array of cultural experience in the evolving discipline of congenital urologic care. SPONSORS Society of Genitourinary Reconstructive Surgeons

4 CO DIRECTORS Hadley Wood, MD Staff, Department of Urology Glickman Urological & Kidney Institute FACULTY Hesham Badawy, MD Faculty, Department of Urology Cairo University Cairo, Egypt Christie Cavaliere, MD Staff, Department of Plastic Surgery John Connolly, MD Staff, Department of Nephrology University College London Naomi Crouch, MD Consultant, Department of Gynecology Bristol University Bristol, United Kingdom Heather DiCarlo, MD Director, Pediatric Urology Research Johns Hopkins University Baltimore, Maryland Frederick Frost, MD Chair, Rehabilitation Medicine Sean Elliott, MD Professor, Vice Chairman, Director of Reconstructive Urology University of Minnesota Minneapolis, Minnesota Piet Hoebeke, MD PhD Chairman, Urogynecology Ghent University Gent, Belgium Nestor Oscar Katz, MD Head, Urology Ramos Mejía Hospital Faculty, University of Buenos Aires Buenos Aires, Argentina Melissa Kaufman, MD PhD Assoc. Professor, Department of Urology Vanderbilt University Nashville, Tennessee Marty Koyle, MD Head, Division of Urology Hospital for Sick Children Toronto, Canada Dan Wood, MD PhD Consultant, Adolescent/Pediatric Urology University College Hospital David Majdalany, MD Co Director, Adult Congenital Heart Disease Center Erin McNamara, MD MPH Assistant in Urology Instructor, Harvard Medical School Boston Children s Hospital Boston, Massachusetts Nicole Miller, MD Associate Professor, Urology Vanderbilt University Nashville, Tennessee Karen O Brien, RN BSN Wound Ostomy Continence (WOC) Ajita Prabhu, MD Staff, Department of Plastic Surgery Beri Ridgeway, MD Chair, Regional Obstetrics/Gynecology Yahir Santiago Lastra, MD Assistant Professor, Urology University of San Diego San Diego, California Claire Taylor Consultant Urologist Guy s Hospital and King s College Gunter van Win, MD PhD Professor, Urology University of Antwerp Antwerp, Belgium Sarel Vorster, MD Staff, Department of Neurosurgery Prof. Christopher Woodhouse Professor of Adolescent Urology University College London Jessica Lawson, RN Wound Ostomy Continence (WOC)

5 Urologic Congenitalism International Summit TENTATIVE PROGRAM SCHEDULE WEDNESDAY, MAY 15, 2018 TRANSITION AND MULTIDISCIPLINARY 7:00 a.m. 7:45 a.m. Registration/Continental Breakfast 7:45 a.m. 8:00 a.m. Welcome and Introductions Hadley Wood 8:00 a.m. 10:00 a.m. TRANSITION MODELS Moderator: Dan Wood 10:00 a.m. 10:15 a.m. BREAK AND EXHIBITS Adolescent Urology: Where We ve Been and Where We Need to Go Christopher Woodhouse A View from Emerging Economies: Transition and Barriers in Argentina Nestor Oscar Katz Tackling Transition in Boston: US Perspective Erin McNamara 10:15 a.m. 10:45 a.m. Bladder Manager in Adults with CP Sean Elliott 10:45 a.m. 12:00 p.m. Troubleshooting Appliance Fit Challenges and Troubleshooting Challenges with Catheterizable Channels Jessica Lawson and Karen O Brien 12:00 p.m. 1:00 p.m. LUNCH AND EXHIBITS 1:00 p.m. 5:00 p.m. MULTIDISCIPLINARY TALKS Perioperative and Surveillance Recommendations in Adults with VACTRL David Majdalany Pain and Depression in Adults with Spina Bifida Frederick Frost Wound Prevention and Treatment: A Practical Guide for the Urologist Christie Cavaliere Practical Approaches to Complex Abdominal Wall Problems in Patients with Congenital Abdominal Wall Disease Myelomeningocele, Prune Belly, Bladder Exstrophy Ajita Prabhua VP Shunts in Adulthood and Recurrent Tether/Pseudo tether in Adults with Spina Bifida Sarel Voster Monitoring and Practical Interventions in CKD in the Adult Congenital Neuropathic Patient John Connolly TBD Evening Social Event THURSDAY, MAY 16, 2018 TECHNICAL PROBLEMS AND SOLUTIONS ACROSS THE GLOBE 7:00 a.m. 7:45 a.m. Registration/Continental Breakfast 7:45 a.m. 8:00 a.m. Welcome Hadley Wood 8:00 a.m. 9:45 a.m. ADULT GENITAL/FERTILITY Moderator: Gunter van Win Gynecologic Considerations Beri Ridgeway and Naomi Crouch Male Genital Considerations Heather DiCarlo and Piet Hoebeke 9:45 a.m. 10:00 a.m. BREAK AND EXHIBITS 10:00 a.m. 12:00 p.m. COMPLEX STONE MANAGEMENT Moderator: TBD Nicole Miller + 1 TBD 12:00 p.m. 1:00 p.m. LUNCH AND EXHIBITS 1:00 p.m. 4:00 p.m. COMPLEX BLADDER/UROSTOMY Moderator: Yahir Santiago Lastra Melissa Kaufman Hesham Badawy 4:30 p.m. ADJOURN Marty Koyle Claire Taylor