Boston Children's Hospital Autism Spectrum Center's Autism Friendly Hospital Initiative
April 15, 2014
Mission: To provide excellent, timely, culturally competent, multi-disciplinary care for all children with ASD and their families.
Providers in the Autism Spectrum Center at Boston Children's Hospital have been working on several projects as part of a larger Autism Friendly Hospital initiative to improve care of children with autism spectrum disorder (ASD) and related conditions. The Autism Spectrum Center is a multidisciplinary effort which brings together clinicians from a multitude of disciplines - neurology, developmental behavioral pediatrics, psychiatry and psychology, genetics and genomics, communication enhancement, child life, social work, OT, gastroenterology, nursing and the Center for Families. The Center offers diagnostic and ongoing care services to children from birth to 21 years who have or are suspected to have ASD. In addition, clinicians in the Center provide education and consultation to colleagues throughout the hospital with the goal to improve awareness of the unique care needs of children with ASD, remove barriers to care and improve the patient and family experience.
One challenge for our group was maintaining the hospital's mission of providing care to children and families in the communities where they live. Rather than having a single co-located clinic, the Autism Spectrum Center offers diagnostic and management services in multiple departments throughout the main hospital and our many community satellite facilities. An initial key effort to standardizing care across diverse departments was establishing a multidisciplinary clinical practice guideline (CPG) for diagnosis and management of ASD at Boston Children's Hospital. The multidisciplinary focus of our guideline is unique and reflects the expertise of many specialties. Part of this process involved creating an online tutorial required of all clinicians who diagnose ASD, ensuring that all clinicians use the same standards for diagnosis and treatment, regardless of the department in which they are working.
Our Clinical Outcomes Workgroup leads innovative efforts to improve care through smaller task-focused workgroups that include members from a variety of disciplines and clinical departments. One important effort has involved writing a set of preparatory stories related to specific procedures and clinical areas. "My Hospital Stories" was created to assist patients with ASD and their caregivers as they prepare for procedures in the hospital, to increase their knowledge of what to expect, and to decrease anxiety about upcoming visits. Over 50 "My Hospital Stories" have been written using language, pictures, and formatting familiar to children with ASD and are available electronically for families to access. In addition, our innovative team has just launched the "My Hospital Stories" interactive app that includes photographs to accompany the stories and allows for customization by the end user. The app can be downloaded to smartphones and tablets.
We offer ongoing supports to families in between visits through our parent email messaging service and our Parent Forums. The email messaging provides educational material in weekly/then biweekly emails to families for the first year after diagnosis; quarterly updates on timely health information, research and educational opportunities to all families. We also provide a series of evening forums for families and providers. These presentations are practical state of the art updates on topics of key importance to families such as management of anxiety, seizures toileting, feeding and sleep problems, keeping up to date on various technologies that support children's communication and navigating the early intervention and special education systems. The forums are presented and broadcast live but also archived so participants can view them at any time. You can view any of the past presentations at http://authoring.chboston.org/centers-and-services/departments-and-divisions/division-of-developmental-medicine/events/archived-events
Another key component of the Autism Friendly Hospital initiative involves the education and training of hospital personnel to improve care for children with ASD. We provide training to specific, high-priority departments in the hospital in a systematic, tiered, and multidisciplinary fashion. We tailor the training to the department and individualize trainings to the personnel involved. There are many points at which care for children with ASD may be impacted, from individuals speaking with parents on the phone, to those greeting them at the front desk, to personnel involved directly in invasive procedures.
To assess the impact of these initiatives and ensure we are improving quality of care, we developed an electronic caregiver survey (ASD Assessment of Barriers to Care, ASD-ABC) that will be periodically administered to families in order to determine the scope of the problem and to inform ongoing efforts to improve outcomes for children with ASD. This survey asks parents specifically about barriers to following through on medical recommendations and what support services might be helpful to improve access. The survey will be administered through our Integrated Clinical Information Sharing System (ICISS) system, a secure web portal that allows caregivers to provide information directly to clinicians prior to or following clinical visits. In addition, we have developed a Comprehensive Accommodation Plan (CAP). The CAP is designed to be completed/updated electronically by parents prior to visits to ensure that a proactive behavior plan exists in the electronic medical record that any provider can access.
We are currently developing a parent survey to monitor progress and identify areas of concern for families prior to clinical visits. The Autism Spectrum Disorder Parental Response Outcome Measure (ASD-PROM) was developed to accompany follow-up visits to track behavioral concerns and progress specific to children with ASD. The survey will be administered through ICISS and will allow for graphical representation of results and formatting that allows for incorporation into clinical notes. We will monitor the impact of the survey on clinical care and anticipate that it will streamline visits and allow clinicians to provide more family-centered care.
Finally, all of our initiatives receive guidance from our Autism Spectrum Center Family Advisory Council (FAC). This group was formed in September of 2013, meets quarterly, and is comprised of approximately 10 to 12 parents of children with ASD who are seen by specialists throughout the BCH system. We are fortunate to have such committed parent partners working alongside us to accomplish all of our autism friendly initiatives.
Our Clinical Outcomes Workgroup includes several current HRSA MCHB DBP and LEND trainees. Sabrina Sargado is a DBP fellow and Niki Baumer and Karen Spencer are LEND fellows. Many of our faculty are also former trainees: Carolyn Bridgemohan (Center Co-director), Eugenia Chan (Quality Management Director), Laura Weissman and Alison Schonwald are former DBP trainees and Leah Welchons is a former LEND trainee.
