In October 2024, OAR’s Board of Directors authorized funding for five applied autism research grants and one autism resource grant. These new grants, totaling $288,930, bring OAR’s total research funding to $5.3 million since 2002. This article is the first of the previews to be featured in The OARacle this year.
Safe and compassionate anesthesia care for autistic children is a paramount yet unmet medical need. More than 110,000 autistic children have surgery in the United States annually, and thousands more require anesthesia for diagnostic imaging and other non-surgical procedures. Several preoperative conditions, such as the need for prolonged fasting, protracted wait times, required transitions, bright lights, and new sounds may lead to an autistic child’s frustration, anxiety, and ultimately maladaptive behaviors.
In this two-year, OAR-funded study, “The Impact of Adaptive Sensory Environments on the Perioperative Care for Children with ASD,” researchers Lisa Einhorn, M.D., and Sean Antosh, M.D., will evaluate the impact of an adaptive sensory environment and individualized behavioral coping plan (ASE/BCP) on the perioperative experience of autistic children and their families. The perioperative period includes the preoperative, intraoperative, and postoperative phases. They hypothesize that creating an adaptive environment and following a behavioral plan will result in less preoperative anxiety, less premedication, and greater parental satisfaction.
The study’s objective is to expand and strengthen the evidence supporting the use of ASE/BCPs for the perioperative care of autistic children. The study has three goals:
Dr. Einhorn is a board-certified pediatric anesthesiologist and pain specialist at Duke University School of Medicine, Durham, North Carolina, with experience in leading multiple prospective clinical trials. As both a physician-scientist and a mother of an autistic child, she is uniquely qualified to conduct this work to advance the perioperative management of autistic children.
Dr. Antosh is a board-certified pediatric anesthesiologist and clinical director of special needs patient experience at Dayton Children’s Hospital, Ohio. He has successfully led a multidisciplinary team at the hospital to develop and implement perioperative ASE/BCPs.
Dr. Einhorn and Dr. Antosh will conduct a clinical investigation at Duke Children’s Hospital and Dayton Children’s Hospital. In total, the two hospitals provide anesthesia care for over 20,000 pediatric patients annually, including approximately 1,000 autistic children. At Duke, care for autistic children is not individualized and perioperative ASE/BCPs are not offered. At Dayton, each autistic child receives a personalized perioperative ASE/BCP.
The researchers specifically selected the two-site approach because many families of more severely affected or anxious autistic children who participated in previous studies did not want to risk being a part of the non-ASE/BCP group. Additionally, while both institutions are children’s hospitals with highly specialized medical personnel, the difference in care delivery for pediatric autistic patients and their families is representative of the wide variability seen across children’s hospitals in the United States.
Each site will enroll 102 autistic children ages 3 to 12 who will receive perioperative care, for a total of 204 study participants. There will be no change to the surgical or anesthetic management based on study participation. The participants will be healthy or have a mild systemic disease to decrease the variability associated with patient and procedural-related factors across two institutions.
Dayton uses both an adaptive sensory environment and an individualized behavioral coping plan. A certified child life specialist contacts the families of autistic children about a week prior to anesthesia/surgery to develop an individualized behavioral coping plan for the day of surgery. To create a behavioral coping plan, the care team does a detailed child life assessment that includes previous medical experiences, their communication abilities, specific interests, sensory sensitivities, best environment, comfort items, and triggers. The plan is documented in the electronic health record for review by the care team prior to the day of anesthesia/surgery.
Following check-in and registration on the day of anesthesia/surgery, autistic children and their families are taken to a preoperative room set up by nursing and child life staff to account for sound, light, activity level, and other stimuli, according to the patient’s behavioral coping plan. In addition, a specialized nurse liaison coordinates care. Specific equipment that can be included in the room includes a portable popcorn tube with fiberoptic cart, handheld marble panel, color-changing floor tiles, sensory fidgets, sensory chairs, and individual sensory toys. Caregivers may request specific equipment to be turned off or modified. Patients will be allowed to use any comfort items brought from home and are offered a hospital iPad with games and age-appropriate videos.
Standard-of-care procedures at Duke include a general preoperative phone screen assessment approximately 48 hours before anesthesia/surgery by a registered nurse or advanced practice provider and the involvement of a certified child life specialist on the day of anesthesia/surgery. Children may bring comfort items from home, and the hospital provides an iPad with games and age-appropriate videos, sensory fidgets, and toys in the preoperative area. There is no adaptive sensory environment or individualized behavioral coping plan.
The researchers will assess child anxiety before and during administering anesthesia to determine the impact of an individualized ASE/BCP on perioperative anxiety. They will also ask patients and parents to report on the patient’s experience before and during anesthesia. For patients who cannot verbally report, the researchers will use a parent questionnaire to rate the level of their child’s anxiety and/or a pictorial scale with faces registering different levels of anxiety that children can point to.
To evaluate medication requirements prior to administering anesthesia to autistic children, the researchers will use a sensitivity analysis, using information from patients’ electronic health records.
To determine parental satisfaction, they will use a survey that allows parents to evaluate pediatric evaluation services.
The results of this investigation will provide an evidence-based step toward expansion of autism-specific perioperative pathways in children’s hospitals. The researchers anticipate that their recommendations will include:
The researchers will translate their findings for hospitals and other healthcare institutions, including:
Through this evaluation, the researchers hope to put forward an innovative process to advance safe, holistic, equitable, and compassionate medical care for autistic children who require procedures under anesthesia.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.
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