Boston Medical Center Autism Friendly Initiative: Improving

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Boston Medical Center Autism Friendly Initiative: Improving Hospital Experience for Patients with Autism Sarah Qin, MBA1; Shari King, MA1; Lauren Busa, MA1; Julia Goupil1; Daniel Cahill1; Sarabeth Broder-Fingert, MD, MPH2; Marilyn Augustyn, MD1 1Department of Developmental and Behavioral Pediatrics, Boston Medical Center 2Department of Pediatrics, Boston University School of Medicine *We have nothing to disclose

Background Identifying the Challenges Targeted Interventions Trainings The prevalence of autism spectrum disorder (ASD) is rising, Staff Survey: In partnership with PLAN parents, the Boston University School of however, there are significant barriers to quality healthcare for Autism Support Checklist (ASC) Medicine and the Goldman School of Dental Medicine, we train patients with ASD. Patients with ASD experience more outpatient Autism Support Checklist Name of Patient: ______The Autism Support future doctors and dentists how to better interact with patients visits and their annual healthcare costs are higher than patients Date Completed: ______Communication Checklist collects with ASD. 1. How does the patient communicate information? without ASD. Patients with ASD encounter high levels of unmet Spoken language Pictures information from Written Words need and lower levels of satisfaction with care. To address these Non-verbal “I will be better able to recognize ASD and adapt to Electronic Communication patients with ASD Gestures issues at Boston Medical Center (BMC), we have launched the Other: ______patient interactions and understand the needs of both 2. What would help the patient understand information? and their caregivers Spoken language Autism Friendly Initiative to improve the healthcare experience for Pictures the patient and family.” Written Words about individualized Electronic Communication rd Other: ______-3 Year Medical Student our patients with ASD. 3. How does the patient communicate pain? Spoken language communication and Crying/Screaming Self Injury Aggression sensory needs, as Other: ______Sensory Needs well as tips for 4. Does the patient have sensory triggers/needs? Avoid bright lights Avoid loud noises interacting with the Avoids touch Seeks pressure Other: ______patient. This 5. What items/actions would be helpful? Sunglasses Headphones Stress Ball information is made Other: ______Interacting with the Patient available to clinicians 6. What would help the patient understand the procedure/exam? Talk the patient through the exam Demonstrate on another person and staff throughout Show a picture schedule Other: ______7. Are there particular actions or phrases that are likely to trigger the patient? the hospital through (e.g. people speaking loudly) Yes? Please explain: No EPIC, the electronic 8. Are there behaviors that are likely to need staff assistance? Bolting Self-injurious behaviors Hitting, kicking etc. medical record Other: ______

9. What other information should we know to help make the patient more comfortable? system utilized at For any questions or comments on the ASC, please contact us at [email protected]. BMC. Parent Focus Group: 2.2 visits 8.0 visits “The saddest thing about autism is that it’s an Autism Toolbox Average number of annual physician visits* invisible disability. From security, the greeters at The Autism Toolbox contains objects to enable *Liptak GS, Stuart T, Auinger P. Health care utilization and expenditures for children with autism: data from U.S. national samples. J Autism Dev Disord 2006;36:871–9. the door, the nurse’s assistant and everything, they patients to better cope should be aware of autism.” with sensory needs, for Conclusions Methods example, sunglasses and While efforts to improve and standardize medical care for patients noise cancelling In order to achieve our goal of improving the health experience Ethnographic Study: with ASD are beginning to emerge, to date, none of these headphones. For patients guidelines address the needs of patients with ASD when for our patients with ASD, we first developed partnerships with In order to identify the specific barriers faced by patients with ASD and with ASD who are sensory navigating the hospital setting. Our methods may provide a key stakeholders including clinicians and staff throughout BMC, as their families when accessing health care at BMC, we are following seeking, items like stress well as patients and families. To identify the specific challenges patients to their appointments in at least eight clinical departments at roadmap for approaching the important work of tackling this balls and pop tubes, and a critical issue. faced by patients with ASD, we have undertaken surveys, focus BMC. We are using ethnographic and observation methods to closely weighted lap pad provide observe each step in the complex process of obtaining medical care, groups and studies. Based on our assessments, we have tactile input. Similarly, developed, and are piloting a range of interventions. identifying any challenges or barriers that are experienced throughout these visits. bubbles and a light-up toy provide visual stimuli. Steering Committee Results Categories of Personnel: We identified three categories of challenges faced by patients with Health Care Social Stories App ASD during healthcare encounters: gaps in clinician and staff Administrators, Physicians, Nurses, and other Clinicians The app is a series of dynamic user-informed social stories about knowledge about autism, complex sensory needs of patients, and the healthcare encounter populated with photographs of BMC Departments Include: bidirectional communication challenges between provider and departments to better prepare patients for their appointments patient. • Pediatrics • Adult Medicine (will be available for free). Social stories include getting a blood • Nursing • Dentistry draw, taking vital signs, dental procedures, and more. • Social Work • Security Sensory Needs • Child Life • Patient Advocacy • Emergency Department • Facilities Contact Information The Autism Program at Boston Medical Center Partnership with Parents [email protected] Negative 617-414-3842 We have a strong partnership with The Parent Leadership in Patient www.bmc.org/pediatrics-autism-program Autism Network (PLAN), an initiative of the BMC Autism Program. Experience PLAN is comprised of a diverse, multilingual group of parent Gaps in Communication leaders. Their feedback on the Autism Friendly Initiative efforts is Knowledge challenges consistently incorporated.