Coming to an operating room (OR) near you: a child with autism spectrum disorder. Will you be ready to give them the personalized treatment they need?
This was the message from a McMaster University research team, whose pilot study demonstrated the feasibility of multidisciplinary perioperative care plans that reduce anxiety and agitation in this special population. Initial feedback from nurses, anesthesiologists and parents has been very positive.
“One in 68 children is now diagnosed with autism,” said Amanda J. Whippey, MD, assistant clinical professor of anesthesia at the Hamilton, Ontario, institution. “And both the literature and our real-life experience tell us that perioperative stress is high for these children, for their families and for the health care providers who are trying to care for them. When we survey health care providers, they often say that they feel ill-equipped and don’t have the tools available to help manage these children in the hospital.
“So we wanted to see if we could create a care pathway that could minimize perioperative stress and help these children.”
With that in mind, the researchers turned to parental and provider feedback to develop a special accommodations protocol over an 18-month period. The protocol was intended to be a comprehensive and individualized care package that began at the time of booking and continued through discharge. The protocol included a variety of factors, such as environment modifications, individualized anxiolysis plans, specialized order sets and support from child life specialists.
“At the time of the preoperative visit, the children underwent an autism severity assessment [Table 1] where we looked at things like their communication style, motivators, triggers, how they respond to stress, and how they transition into different environments,” Dr. Whippey said.
Table. Enhanced Perioperative Management of Children With Autism: Assessment Form | |||
Name: | Age: | Weight: | |
Autistic Severity Level | Comments | ||
---|---|---|---|
Level 1 | Responds to name; is aware of another person’s presence | ||
Level 2 | Interacts with toys; beginning language repetition in play and tasks | ||
Level 3 | Interacts with others; controls own behavior | ||
Level 4 | Maintains control; verbalizes feelings; understands rules and regulations | ||
Communication Style: | Communication Notes | ||
Verbal | |||
Nonverbal | |||
Verbal learner | |||
Visual learner | |||
Assistive devices: | |||
Motivators, Likes: | Patient’s Response to Likes | ||
Food/drink (favorite clear fluid drink) | |||
Activities | |||
Objects | |||
Environment | |||
Sensory Challenge, Dislikes: | Warning Signs of Stress | ||
Smell | |||
Noise | |||
Touch | |||
Crowds | |||
Sight | |||
Other | |||
Ability to transition to new environment: | |||
Past Perioperative Experience: | Parental Concerns for This Surgery | ||
Pleasant | |||
Acceptable | |||
Difficult | |||
Extremely distressing? |
“This information was used by the pediatric anesthesiologists in the clinic to tailor a sedation plan specific to the child. We used premedication, environmental modifications such as a quiet room to decrease sensory input, service animals—whatever the parents felt was needed to help transition these children through the operative experience.”
As with everything else in the care plan, preoperative medication also was individualized for the patient, primarily using oral, IV, or intramuscular midazolam and/or ketamine. The investigators recorded patient anxiety and sedation scores on the day of surgery, at induction and in the PACU. Feedback on the intrusiveness and efficacy of the protocol from nurses and anesthesiologists was obtained, as was parental satisfaction.
As Dr. Whippey reported at the 2017 annual meeting of the Canadian Anesthesiologists’ Society (abstract 284514), 18 patients were included in the pilot study. Their most common sensory dislikes were noise and crowds. “Because the children were on the far end of the spectrum, presedation figured heavily into our individualized plans, and 60% required both midazolam and ketamine for sedation [Table 2]. In total, we had over 10 different premedication plans, so they were tailored individually to the child.” Average recovery time was 60 to 90 minutes.
Table 2. Summary of Presedation Medication | |||
Drug | Route | Dose, in mg/kg | Percentage, % (n) |
---|---|---|---|
None | … | 5 (1) | |
Midazolam | PO | 0.5 | 38 (7) |
PO | 0.25 | 38 (7) | |
Ketamine | PO | 3 | 50 (9) |
IM | 6 | 16 (3) | |
IM | 2 | 16 (3) | |
IM, intramuscular; PO, oral |
The investigators were even more encouraged by the fact that all 18 patients completed the program from start to finish with no cancellations, an important consideration as 15 of the children in the study were nonverbal and minimally interactive. “What’s more,” Dr. Whippey said, “these children had a history of traumatic inductions and problems in the perioperative period.” Although the children’s anxiety scores were high before premedication, 90% of anesthetic inductions were described as either very good or excellent. One episode of emergence delirium occurred in the PACU.
Parents and Staff Appreciate the Program
An equally important part of the program’s success was parental feedback, the overwhelming majority of which was positive. Parents appreciated the personalized approach, quiet space, dedicated child life support worker and their own presence in the OR as beneficial. Half of parents believed no further changes were needed to the program, whereas others sugges ted that minimizing people in the area and shorter wait times would be helpful.
“The accommodating staff were noted in many of our reviews,” Dr. Whippey added. “The response from parents was great, but the response from our staff was overwhelming. They felt empowered to help these children and really jumped on board and ran with it. They really made this the success that it was.” Perhaps not surprisingly, 100% of nurses, anesthesiologists and parents believed the program should continue.
“Due to the overwhelming feedback that we received, we feel that this program is not only feasible but necessary for the children in our care.”
Session co-moderator Robin Cox, MD, noted that his institution has embarked on a very similar journey with autistic children. “One thing I’ve noticed is that sometimes with a new program like this, there may be more than one child life worker or a student in the operating room,” said the professor of anesthesia at the University of Calgary, in Alberta. “And then there may be extra nurses, an anesthesia assistant or a resident anesthesiologist as well. There could be as many as 10 people in the room, and crowds can be detrimental to these children.
“So that’s one little wrinkle we’ve found, and I’m wondering if you’ve found the same thing.”
“Crowd control is one of our major issues, and is one of the many jobs that our child life specialists undertake when they help manage these cases for us,” Dr. Whippey replied. “We put signs on the OR doors to notify people that special accommodations are in place, that is, to keep out. We really try to minimize the unnecessary contact that these children have with different faces. And it’s pretty clear in the literature that having one provider and one voice is a way to help minimize stress in these children.”
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