Improving Induction Experiences for Children with Autism Spectrum Disorder and/or Developmental Delay
Rita Agarwal MD and Alyssa Burgart MD MA
This PAAD was first posted on July 15, 2024
A defining part of being a pediatric anesthesiologist is our ability to care for children with a range of ages and developmental differences. This includes the variety of needs for children with autism spectrum disorder (ASD) and/or developmental delay (DD). We imagine we are not alone at our institution, in seeing an increasing number of requests for children with ASD or DD to receive anesthesia for simple procedures such as blood draws, BP measurements, feeding tube, or dressing changes1. We applaud the eagerness to reduce trauma for children. However, finding an approach that makes sense for all involved requires attention to patient, family, and systems factors. How can we safely bring these children into the hospital while avoiding harm? Is there an ideal approach to anesthesia or sedation? Where should we perform non-operative type procedures? Who will be responsible for this process? It is often the primary care physician/team who is requesting this support, and they often so do not have operative privileges. They also may not necessarily recognize the unique complexities of getting these patients to the hospital and to a safe anesthetizing location. .
While today’s article by Sahyoun, et al.1 is not strictly an anesthesia article, it caught our attention because its principles could be applied to patients undergoing general anesthesia. The short yet important article offers potential insights into caring for children with ASD/DD. At our institution, we used to have a team dedicated to helping create individualized and personalized plans for our children with significant behavioral challenges. Unfortunately, that team was disbanded for a number of reasons, including cost, resources, and personnel. We still have a group of wonderful caring professionals, including nursing, child life, social workers, and anesthesiologists, but the system is not as robust as it once was.
Children with ASD/DD often have increased anxiety, have been exposed to more procedures, and may have had previously traumatizing experiences that have extinguished their trust in the medical system. Their age, size, comorbidities, and ability to communicate can impact our ability to care for them safely. Many of the solutions offered require pre-planning, time and additional resources, that not all practices and institutions will have. As anesthesiologists with immense experience and skills in caring for this unique population, both this article and an excellent review paper have us reconsidering what individuals and institutions could be doing better.1,2
Original article
Sahyoun C, Krauss B, Bevacqua M, Antonsen A, Jardinier L, Barbi E. Safety and Efficacy Associated With a Family-Centered Procedural Sedation Protocol for Children With Autism Spectrum Disorder or Developmental Delay. JAMA Netw Open. 2023 May 1;6(5):e2315974. doi: 10.1001/jamanetworkopen.2023.15974. PMID: 37252743; PMCID: PMC10230313.
This study looked at 43 children in Switzerland who had ASD or DD aged 2-16, who had previously been described by parents as “unapproachable for routine immunizations and venipuncture due to extreme agitation,” and who needed a range of minor procedures/examinations, such as ultrasound imaging of the heart or abdomen, dental examination, ECG, nasal endoscopy, and/or blood draws.
Using a family-centered integrated behavioral and sedation protocol, the authors’ main study outcome was whether a child required physical restraint for minor procedures/examinations. Families were contacted a week prior to the scheduled procedure and instructed to start administering physiologic saline drops into their child’s nostrils 2-3 times per day, in a calm, safe environment in an effort to desensitize the patient to nasal administration of medications.
On the day of the procedure, the family was encouraged to place EMLA cream at home in children who would require, blood draws, port access, LPs etc., with pictograms showing the correct placement. Upon arrival for the scheduled procedure, 4 mcg/kg (max 200 mcg) of intranasal dexmedetomidine was administered by either the parents (with clinician supervision) or the clinician, depending on the parents’ preference. The focus was on placing the child in a position of comfort, although tilting the head back was encouraged. The procedure room was kept quiet, and lights were dimmed. The number of staff members was minimized, and preferred music and/or devices (phone, tablet) were encouraged. Monitoring equipment was only placed when the patient had started to become sedated. The child was placed in their usual sleeping position, and “once asleep, parents supervised by clinicians applied an unscented face mask delivering a free-flowing mixture of 50% N2O/50%Oxygen. Per institutional guidelines, patients were fasted two hours prior to the start of N2O administration50% nitrous oxide in oxygen was administered.”1
The median age of children was 7.2 years, and 72% were male. Sixty seven percent had a diagnosis of ASD, 19% had associated genetic or congenital disorders, and about 1/3rd were taking psychotropic medications. One patient had to have their procedure aborted due to lack of adequate sedation. Of the remaining 42 patients, 39 (93%) did not require physical restraint, 1 patient had minimal restraint, and 2 required more restraint (it took 2 people to hold them down for <30 seconds). Adverse events included prolonged sedation in 3 patients, vomiting in 1, a seizure in a patient known to seize multiple times a day, agitation in 1 at home, and longer night’s sleep in 35. Parental satisfaction was high. Several patients had more than one procedure performed during the encounter and several had multiple encounters using the same technique. The major limitation of this study was the lack of a control group and the lack of alternatives. In addition, there was no discussion of socioeconomic status, race or ethnicity and if or how that may have impacted their results.
We loved the idea of desensitization at home with intranasal saline. We think it would’ve been a good idea to practice desensitization with a face mask as well. The article didn’t specify whether there were any children who didn’t tolerate the home desensitization program and what, if any, alternatives were offered. Other techniques have been described to help improve the perioperative experience for children with ASA or DD, including behavioral and mirroring techniques, first case starts, minimizing stimuli, quiet dim room, minimizing personnel in and out of the room, and liberal use of premedication.3,4 If the child either has a G-tube or doesn’t object to oral medications, oral midazolam is probably the most commonly used premedication, but often these children will have oral aversion, or refuse to take an unknown oral medication in the scary environment that is the preoperative space.
What do you do for your patients with ASD or DD who have known or suspected oral aversion? How have you successfully cared for children described as “unapproachable for routine immunizations and venipuncture due to extreme agitation”? Are there personalized plans in place for these children? How do you reduce traumatic experiences for patients? Send your thoughts and comments to Myron who will post in a Friday reader response.
References:
1. Sahyoun C, Krauss B, Bevacqua M, Antonsen A, Jardinier L, Barbi E. Safety and Efficacy Associated With a Family-Centered Procedural Sedation Protocol for Children With Autism Spectrum Disorder or Developmental Delay. JAMA network open 2023;6(5):e2315974. (In eng). DOI: 10.1001/jamanetworkopen.2023.15974.
2. Brown S, Rabenstein K, Doherty M. Autism and anaesthesia: a simple framework for everyday practice. BJA Educ 2024;24(4):129-137. (In eng). DOI: 10.1016/j.bjae.2024.01.002.
3. Mellado-Cairet P, Harte C, Séjourné E, Robel L. Behavioral training and mirroring techniques to prepare elective anesthesia in severe autistic spectrum disorder patients: An illustrative case and review. Paediatric anaesthesia 2019;29(3):226-230. (In eng). DOI: 10.1111/pan.13566.
4. Ciccozzi A, Pizzi B, Vittori A, et al. The Perioperative Anesthetic Management of the Pediatric Patient with Special Needs: An Overview of Literature. Children (Basel) 2022;9(10) (In eng). DOI: 10.3390/children9101438.
Teaching our residents and fellows trauma-informed approaches to anesthetizing kids is one of my favorite contributions to our field. Working with parents and kids to find ways to reduce stress is a way to pay it forward to these kids and each other.