First year's accomplishments unveiled at ATN Program Meeting
The culmination of the first 12 months of collaborative committee work by ATN clinicians was presented at the annual Autism Treatment Network (ATN) Program Meeting, which was held in Santa Monica, California on December 6-7, 2008. During this first year since the ATN's expansion from 5 to 15 sites, ATN clinicians have worked together to improve the understanding and treatment of autism and related disorders, participating in subspecialty working committees to develop tools that will ultimately improve the quality of life for people with autism and their families.
"The progress made by the network members in such a short period of time was impressive," commented Daniel Coury, M.D., Medical Director for the ATN. "Importantly, these doctors are committed to making a difference in the lives of children with autism and this includes better care and attention to the physical challenges they face."
The primary aim of the meeting was to elicit comment on the draft procedures, tools and related documentation developed over the preceding year to support the establishment of consensus guidelines for the screening and treatment of autism and commonly associated conditions, including sleep disturbances and gastrointestinal complaints. Over sixty clinicians participated including medical specialists in sleep, gastrointestinal (GI) disorders, developmental pediatrics and other disciplines. In addition, program staff from Autism Speaks, MassGeneral Hospital for Children, and EMMES corporation supported the meeting. The National Initiative for Children's Healthcare Quality (NICHQ) – a collaborator for the ATN's HRSA grant provided expertise on healthcare guideline development and implementation. Conference participants also discussed ways to improve the ATN Registry data collection forms, which are used to collect screening, treatment, and other information about children enrolled at the sites. According to James M. Perrin, M.D., Director of the ATN's Clinical Coordinating Center, "The meeting galvanized the different groups into joint action to address ways to improve the medical care children with autism receive."
Sleep and GI clinicians examined their draft guidelines in partnership with pediatricians, with an eye toward fine tuning them to make them useful for non-specialists in treating sleep and gastrointestinal problems. Implementation of such guidelines should enable physicians to provide immediate care for children and support to their families, reducing the need for referrals to specialists and the high costs and long wait times that may often accompany such referrals.
Materials developed by the sleep specialists include an algorithm (that is, a set of procedures and decision outline) to assist non-sleep specialists in diagnosing and treating sleep disturbances, specifically insomnia, plus tools to help physicians and families better understand and manage the sleep behavior of children with autism. These latter include a Sleep Strategies guide, a picture-based sleep schedule, and a sleep log.
GI specialists have produced a set of three algorithms for diagnosing and treating GI concerns commonly experienced by children with autism including constipation, diarrhea and food allergies.
Two algorithms, for diarrhea and constipation, are each divided into two components. They provide guidance to pediatricians about how to undertake initial therapies, and advise GI specialists how to pursue the most appropriate interventions for patients who have autism accompanied by a particular GI diagnosis. Because some food allergies may give rise to symptoms similar to those of other GI conditions, the draft Food Allergies algorithm is geared toward helping pediatricians recognize GI symptoms commonly associated with food allergy and to help them differentiate between food allergies and symptoms of other conditions. Oren Abramson, M.D., a GI specialist from Kaiser Permanente, Northern California, who worked on the algorithms and took part in the meeting commented, "It was impressive to realize how many different practitioners need to cooperate in the care of ASD and how the cooperation needs to be ongoing throughout the course of therapy – truly a 'network issue'."
As the draft guidelines, algorithms and tools are refined they will be piloted at the sites in 2009 and revised based on evidence derived from these trials. When the clinicians feel that sufficient evidence supports their use, they will be disseminated through publication, presentations and posting on websites, across the wider medical community so that more children and their families can benefit.
Dr. Coury further remarked, "The overall energy level and almost exuberant mood of the meeting was obvious. Everyone there was enthusiastic about what the ATN is doing, their individual roles in carrying out the mission, and in providing their input. As a newcomer to the ATN, I was pleasantly surprised by this level of commitment and energy, and I feel it bodes well as we move into the second year of this cycle and begin collecting data on the outcomes of the subjects enrolled in the registry."
Given the commitment and enthusiasm of the many people who make up the ATN, the goodwill that characterized this meeting is likely be typical of the future meetings of this highly skilled and committed network.