Medical Care Program for Autism Spectrum Disorders Population in Madrid

Background: Autism Spectrum Disorders (ASD) individuals have more medical needs than general population.  They have more medical pathology and great difficulties in identifying and communicate their symptoms. Medical assisstance to this population is usually poor in our context. To provide access to high quality medical care for individuals affected with ASD, a comprehensive medical care program has been implemented recently in Madrid (Spain). This program is open to individuals of all ages and serves the whole Madrid´s catchment area (6 million people).

Objectives: ·    

.     To centralize medical attention and facilitate access to specialized medical care
·     To facilitate differential diagnosis of medical problems, including those causing behavioural deterioration.
·     To provide access to a Psychiatry Specialized Unit.
·     To improve ASD individuals’ health, taking care of daily problems as diet, sleep, dental health.
·     To provide coordination with different medical services to cover medical needs in an organized fashion (reducing waiting times, adjusting spaces with visual sequences and    pictograms, performing several procedures in the same day, etc).
·     To enhance knowledge about ASD among health professionals and promote specific adaptation of general medical procedures when treating ASD patients.

Methods:

Population: ASD individuals of all ages throughout all Madrid´s territory (6 million people)
Procedure:
1.      Setting up a specialised Psychiatry Unit in a Tertiary Hospital for the treatment of ASD patients.
2.      Setting up a case management approach.
3.      Meetings with the heads of the most demanded specialities. 
4.      Development of good practice guidelines for the physical environment, medical procedures and diagnostic techniques.
5.      Design and application of questionnaires for the evaluation of the effectiveness and satisfaction with the Program
6.      Divulgation of the Program among ASD parent associations and educational services.

Results: During the period 1^st April to 1^st November 2009, 235 new patients have been attended by this program. There have been 250 follow-up visits. There were 67% children (18 months-16 years) and 33% adults (>16 years). 147 visits have been organised to other medical specialities and 261 have received a medical procedure or a diagnostic technique. The most demanded specialities were Neuropediatrics (27%), Nutrition (13%), Estomatology (9%) Gastroenterology-Digestive (8%), and Dermatology (7%). The most common procedures and diagnostic techniques were blood test (37%), electrocardiogram (22%), and electroencephalography (6%). Preliminary results seem to confirm the presence of more physical pathology in this population.

Conclusions: A nurse case management approach, with emphasis on information and teaching of professionals, support to patients and families, and coordination between and within medical specialties seems appropriate and useful to improve the medical assistance of ASD population. Doctors should centre their activity in improving knowledge and individualizing treatments for this population. A program has been set up to assess the effectiveness of the effect of the Medical Program on the medical assistance of this population.