neurodesarrollo y enfermedades degenerativas en la infancia · 2018-12-04 · enfermedades...

Neurodesarrollo y

enfermedades degenerativas en

la infancia

Dra Martha Solano

MPS Preceptorship

Ángela RoaMartha Solano

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

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

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.

Preseptorsip Hunter

• Gestation

• Training

• Methodology

• Impact

• Result

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.

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.

• 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.

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.

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.

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

Collaboration and training

• Villa Metabolica. Michael Beck

Protocols and echocardiogram

Crsitopher Kapman

About the Gestation and trainig

Pneumologist

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:

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.

Rehabilitation

Audiology

Impact

• Families

• Doctors

• Goverments and regional insurers

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 .

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.

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.

Hunter como modelo de atencion

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

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.

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

Specialist and theirprerogative

• • Speech Therapy - Dr. Constance Acevedo.

• • Ophthalmology - Dr. Maria Paula Hernandez.

• • Pediatric Cardiology - Dr. Claudia Stapper.

• • Pneumology - Elida Dr. Dueñas.

Test Echoes

Spirometry

Audiological tests.

Service vocation