![Page 1: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/1.jpg)
Neurodesarrollo y
enfermedades degenerativas en
la infancia
Dra Martha Solano
![Page 2: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/2.jpg)
MPS Preceptorship
Ángela RoaMartha Solano
![Page 3: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/3.jpg)
MPS Preceptorship Program
1st Cardiovascular Center in Colombia, 5th in Latin America
Mission
To provide specialized care to children and adults at a national and regional level that is focused on
cardiovascular care and other high complex services
![Page 4: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/4.jpg)
![Page 5: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/5.jpg)
Espacio para referencias bibliográficas (Letra color blanco, tamaño 11 puntos)
MPS Preceptorship Program
6 years working togehter
46 patients impacted in Colombia
The contact with the patient and thetreating doctor is made by FCI directly
13 medical disciplines assessments for each patient
A group learning activity, led only by FCI in Colombia, with the careful ethical management required
![Page 6: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/6.jpg)
Preseptorship MPS FCI
• The preceptorship of MPS disease is a training that takes place in the span of three days at the FCI, by a group of experts made up of a multidisciplinary group, which is aimed at Latin American specialists interested in the management of this condition.
![Page 7: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/7.jpg)
Preseptorsip Hunter
• Gestation
• Training
• Methodology
• Impact
• Result
![Page 8: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/8.jpg)
Concept
• A preceptorship is a experience of tutoring in which medical experts in an area, trains and supervise students and specialists in monitoring patients with a specific disease, in this case MPS disease.
![Page 9: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/9.jpg)
Interdisciplinary
• This requires a multidisciplinary group for the topographic diagnosis and clinical and surgical management, which in turn requires that these patients are cared in centers of high complexity.
![Page 10: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/10.jpg)
• Responding to this need of the patients and the great concern that has generated among physicians the change of the natural history of the disease produced by a therapeutic intervention such as enzyme replacement therapy, a model of very consistent attention was created according to the needs of medical equipment, patient, caregiver.
![Page 11: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/11.jpg)
The Hunter's disease preceptorship has three levels in its implementation. A first level aimed at doctors who have not had the opportunity to manage patients even with patients to whom are addressed first for diagnosis and management.
A second level where attending physicians are involved and where they are given support in handling difficult situations and complications in the course of the disease.
A third level that brings experts in disease management and patient in situations of difficult clinical, surgical and / or therapeutic resolution, who together with the ethics committee of the institution make decisions and supports the treating physician.
![Page 12: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/12.jpg)
Scales and evaluation
Fundación Cardioinfantil is a center of fourth level of attention where there is a trained medical staff in
this pathology as surgical area staff that has received training and
experience in the management of surgical pathology afflicting these
patients.
![Page 13: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/13.jpg)
FCIFundación Cardioinfantil is ranked
among the 10 best hospitals in Latin America, with endorsement
by the Join Commission for its clinical research and interventions la foto-9la foto-9
![Page 14: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/14.jpg)
Collaboration and training
• Villa Metabolica. Michael Beck
![Page 15: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/15.jpg)
Protocols and echocardiogram
![Page 16: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/16.jpg)
Crsitopher Kapman
![Page 17: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/17.jpg)
About the Gestation and trainig
![Page 18: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/18.jpg)
Pneumologist
![Page 19: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/19.jpg)
Surgical and Clinical
• In this way the patient and doctor is approached from the area of ethics for his/her attention and is assessed, diagnosed and receive a management plan for all the disciplines involved in the surgical and clinical management of these patients:
![Page 20: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/20.jpg)
Surgical and clinical
Ethics, difficult airway anesthesia, neurosurgery, neuro-pediatrics, cardiology, pulmonology, ophthalmology, orthopedics, ENT, audiologist specialized in this pathology, dentistry, neuropsychology, physical medicine and received a functional assessment by the area of rehabilitation.
![Page 21: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/21.jpg)
Rehabilitation
![Page 22: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/22.jpg)
Audiology
![Page 23: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/23.jpg)
Impact
• Families
• Doctors
• Goverments and regional insurers
![Page 24: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/24.jpg)
Doctors
• Since 2012, we have been implementing this model of action in the Fundación Cardio Infantil(FCI) and is organized by the Unit for Continuing Medical Education CME) of this institution. The event consists of a clinical evaluation by twelve different medical specialties, centered in Hunter syndrome, and in which several doctors receive theoretical and practical training for clinical training and patient care, always giving priority to the focused training for treating physicians of patients .
![Page 25: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/25.jpg)
Impact
• This activity aims to increase knowledge and scientific level in the approach of the knowledge of this syndrome in all doctors attending the preceptorship, in Colombia and elsewhere in Latin America : Peru, venezuela, Ecuador y Colombia.
![Page 26: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/26.jpg)
29 patients and their families
To date, 28 patients have been evaluated, a total of 28
echocardiograms, electrocardiograms, spirometriesand audiological polysomnograms
have been done. 25 audiologicstudies, 28orthopedic evaluations,
20 anesthetic evaluations, 28 neurosurgeries have been
performed. 15 functionality scales were implemented.
![Page 27: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/27.jpg)
Hunter como modelo de atencion
![Page 28: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/28.jpg)
![Page 29: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/29.jpg)
ObjectiveThe group's vision of the
preceptorship is to continue training specialists in order to achieve a much
earlier etiologic and topographic diagnosis and comprehensive
management of each of the affected patients with Hunter disease and
remain a benchmark in terms of Latin America in the management of this condition, in addition to continue
contributing our expertise worldwide
![Page 30: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/30.jpg)
![Page 31: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/31.jpg)
Reports and result
• At the end of the day the patient and physician receive a summary of all interventions and a management plan for each specialty and the opportunity to continue in direct contact with each specialist of the preceptor in the case they require for the management of this condition.
![Page 32: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/32.jpg)
Specialists and theirPrerogatives
•
• The group of specialists that make up this preceptorship:
• • Bioethics - Dr .______ Sinai Arevalo.
• • Neurosurgery - Dr. Jorge Aristizabal.
• • Children's Orthopedics - Dr. Astrid Medina.
• • ENT- Dr. Richard Martinez.
• • Physical Rehabilitation - Dr. Luisa Fernanda Gutierrez.
• • Anesthesiology - Dr. Juan Camilo Giraldo.
• • Neuropediatrics
![Page 33: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/33.jpg)
Specialist and theirprerogative
• • Speech Therapy - Dr. Constance Acevedo.
• • Ophthalmology - Dr. Maria Paula Hernandez.
• • Pediatric Cardiology - Dr. Claudia Stapper.
• • Pneumology - Elida Dr. Dueñas.
![Page 34: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/34.jpg)
Test Echoes
Spirometry
Audiological tests.
![Page 35: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/35.jpg)
Service vocation
![Page 36: Neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades degenerativas en la infancia Dra Martha Solano. MPS Preceptorship Ángela Roa Martha Solano](https://reader036.vdocuments.us/reader036/viewer/2022081406/5f10e3b57e708231d44b4cb3/html5/thumbnails/36.jpg)