1 Health Testing Implementation Strategies for the Autism Support Checklist: A Pilot Study Coral Bays-Muchmore, BSc Developmental and Behavioral Pediatrics, Boston Medical Center
Acknowledgements 2 • Thank you to the BMC Autism Program for their continued support • Belinda O’Hagan, MA • Pooja Sonikar • Alexander Friedman, MPH • Shari King, MA MPH • Lauren Bartolotti, MA • Marilyn Augustyn, MD
Needs of Patients with Autism Spectrum Disorder (ASD) • Patients with ASD have higher rates of 1–4 : • Various medical conditions • Usage of healthcare services • Associated costs of healthcare services • However, patients with ASD and families reported lower satisfaction with the care they receive 5–8 , despite this higher use .
Needs of Patients with Autism Spectrum Disorder (ASD) • Lower satisfaction partly due to unique unmet needs in a typical hospital environment 9–11 . S ensory C ommunication
The Autism Friendly Initiative at Boston Medical Center • Launched in 2017 to improve the Sensory Needs of hospital experience for patients with Patients Autism Spectrum Disorder (ASD) • Data gathered from • Hospital-wide Steering Committee Challenging • Patient ethnographic study Patient • Healthcare utilization record review Experience Communication • Caregiver focus groups challenges Gaps in between Clinician/Staff provider and Knowledge • Three key categories of challenges patient for patients with ASD:
Knowledge Interventions Training Engagements – Staff • Ongoing trainings delivered to clinical and non-clinical staff in order to improve familiarity and comfort in caring for patients with ASD Training Engagements – Students Training for medical students, dental students, and genetics students • providing a foundational understanding of ASD to inform future clinical practice, which includes a facilitated caregiver panel Training Videos Four short, professionally-produced training videos on the following • topics: Fundamentals of ASD • Communication Strategies • Sensory Needs • Safety Considerations • Conferences & Publications Presentations at local, regional and national conferences: • Pediatric Academic Societies (PAS) • HRSA MCHB Autism CARES • New England Pediatric Hospital Medicine • AFI findings published in JAMA, Autism: International Journal of Research • and Practice, with additional manuscripts in progress
Sensory and Communication Interventions Autism Support Individualized care plan that collects information about a patient’s communication style, • Checklist (ASC) triggers, safety concerns and de-escalation techniques • Logged into a patient’s Electronic Health Record (EHR) and prominently displayed so that all providers, regardless of prior relationship with a patient, can understand how to most successfully care for them Sensory Toolbox Integrated into about 20 different hospital departments in collaboration with the • Department of Child Life Contains items meant to calm, distract, and redirect patients who may struggle with the • overwhelming sensory experience in a health care setting Healthcare Social Presents interactive, BMC-specific “social stories”, which can help patients with ASD • Stories App navigate and understand new situations Takes patients through BMC-specific bus stops, garages, campus buildings, and procedures • in order to prepare them for their visit Visual Schedules Helps patients with ASD understand the nature of upcoming events through pictures • Implemented in various adult and pediatric inpatient and outpatient departments •
The Autism Support Checklist (ASC) Does the patient communicate using spoken language? Yes/No
The Autism Support Checklist (ASC) Does the patient have sensory triggers/needs? Avoid bright lights Avoid loud noises Avoids touch Seeks pressure
The Autism Support Checklist (ASC) Does the patient engage in behaviors that could be a safety concern? Bolting Self-injurious behaviors Hitting/Kicking
Study Objectives • Evaluate two implementation strategies for ASC uptake • High-intensity and low-intensity • Determine the acceptability of the ASC by clinicians • Collect patient caregivers’ feedback
Methods • Design : Mixed methods design (QUAN + qual) • Procedure: • Search for upcoming appointments for patients who had ASCs – Database had ~300 patients • Randomly assign their clinicians to either a high-intensity/active (in-person) training or low-intensity/passive (email only) approach
Methods • Procedure (cont): • Comparison of high-intensity intervention to low-intensity intervention High Low Intensity Intensity Received email with invitation to participate and ✓ ✓ ASC FAQ ✓ ✓ Randomized before response Received in-person 15 min session to explain ASC ✓ and answer questions ✓ ✓ Received a post-appointment survey link
Methods • Procedure (cont): • After the appointment: – Clinicians completed a web-based survey with quantitative and qualitative items – Patients’ caregivers completed a phone survey Clinicians Patient Caregivers Incentive None $15 Amazon e-gift card Survey method Online via REDCap Phone call Survey components QUAN + qual QUAN + qual
Assessed patient for eligibility Enrollment Identified clinician for upcoming appointment (n=80) High-intensity (n=40) Low-intensity (n=40) • Agreed to participate (n=16) • Agreed to participate (n=16) Allocation • Declined to participate (n=24) • Declined to participate (n=24) Lost to follow-up (n=3) Lost to follow-up (n=6) • Patient no-show (n=2) • Patient no-show (n=4) • Clinician did not respond to • Clinician did not respond to Follow-up survey (n=1) survey (n=2) Analysis Analyzed (n=13) Analyzed (n=10)
Analyzed (n=10) Analyzed (n=13)
High-intensity Low-intensity Clinicians: Analyzed (n=13) Analyzed (n=10) Patient Caregivers Patient Caregivers Enrollment Contacted (n=13) Contacted (n=10) Follow-up Lost to follow up (n=4) Lost to follow up (n=2) Declined to participate • Declined to participate • Analysis Analyzed (n=9) Analyzed (n=8)
Results Clinician Survey Items High-intensity Low-intensity P-value n Clinicians who reported reading the ASC in full 100.00% 70.00% 0.068 23 Clinicians who reported finding the ASC useful 61.50% 60.00% NS 23 Reported obstacles for ASC: Lack of time 69.20% 30.00% 0.10 23 Information is not useful/relevant to my practice 23.10% 10.00% NS 23 Information is too long 15.40% 20.00% NS 23 Unsure where to located ASC in EPIC 7.70% 30.00% 0.28 23 Clinicians who reported changing their behavior 30.80% 14.30% NS 20 because of the ASC Table 1 – Results from clinician surveys. Data were analyzed using Fisher’s exact test.
Results Clinician Survey Items High-intensity Low-intensity P-value n Clinicians who reported reading the ASC in full 100.00% 70.00% 0.068 23 Clinicians who reported finding the ASC useful 61.50% 60.00% NS 23 Reported obstacles for ASC: Lack of time 69.20% 30.00% 0.10 23 Information is not useful/relevant to my practice 23.10% 10.00% NS 23 Information is too long 15.40% 20.00% NS 23 Unsure where to located ASC in EPIC 7.70% 30.00% 0.28 23 Clinicians who reported changing their behavior 30.80% 14.30% NS 20 because of the ASC Table 1 – Results from clinician surveys. Data were analyzed using Fisher’s exact test.
Results Caregiver Survey Items High-intensity Low-intensity P-value n 77.80% 100.00% NS 17 Clinician understood that patient was trying to communicate 100.00% 87.50% 0.47 17 Clinician communicated in a way that met patient’s needs 66.70% 60.00% NS 8 Clinician used actions/items to meet patient’s sensory needs 85.70% 50.00% 0.42 9 Clinician avoided actions or phrases identified as triggers for patient Clinician offered explanations of medical procedures based on 83.30% 85.70% NS 13 patient’s communication preferences Table 2 – Results from caregiver surveys. Data were analyzed using Fisher’s exact test.
Results Caregiver Survey Items High-intensity Low-intensity P-value n 77.80% 100.00% NS 17 Clinician understood that patient was trying to communicate 100.00% 87.50% 0.47 17 Clinician communicated in a way that met patient’s needs 66.70% 60.00% NS 8 Clinician used actions/items to meet patient’s sensory needs 85.70% 50.00% 0.42 9 Clinician avoided actions or phrases identified as triggers for patient Clinician offered explanations of medical procedures based on 83.30% 85.70% NS 13 patient’s communication preferences Table 2 – Results from caregiver surveys. Data were analyzed using Fisher’s exact test.
Results • 71% of clinicians reported reading the ASC in full and among these clinicians, 70% reported finding it useful . • Potential barriers to ASC: • 43% of clinicians reported “ lack of time ”, 14% reported “ information is irrelevant ”, 14% reported “ information is too long ”, and 17% reported “ unsure where to locate ” • 18% of clinicians reported changing their behavior because of the ASC
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