Can J Anesth/J Can Anesth (2019) 66:1184–1193

https://doi.org/10.1007/s12630-019-01410-y

REPORTS OF ORIGINAL INVESTIGATIONS

Enhanced perioperative management of children with autism:

a pilot study
Optimisation de la prise en charge périopératoire des enfants
atteints d’autisme : une étude pilote
Amanda Whippey, MD, FRCPC . Leora M. Bernstein, MD, FRCPC .
Debra O’Rourke, CLS . Desigen Reddy, MD, FRCPC

Received: 5 November 2018 / Revised: 22 March 2019 / Accepted: 23 March 2019 / Published online: 31 May 2019
 Canadian Anesthesiologists’ Society 2019

Abstract interactive (ASS = 3). Common triggers were loud noises

Purpose When children with autism spectrum disorder (78%), crowds (78%), and bright lights (56%). After
(ASD) are in hospital, difficulties with socialization, implementation of the protocol, 15 (83%) of the anesthetic
communication, and behaviour can be exacerbated. The inductions were described as excellent. Ten different
purpose of this study was to establish feasibility of an premedication plans were used. Parents described the
enhanced perioperative care pathway. personalized plan, anxiolysis medication, and CLS support
Methods Utilizing parental and provider feedback, a as advantageous. All (100%) nurses, anesthesiologists, and
protocol including environment modification, anxiolysis parents felt the program should continue.
plans, specialized order sets, and child life specialist (CLS) Conclusion We showed that a multidisciplinary
support was developed over a nine-month period. Autism perioperative care plan for children with severe ASD was
severity scores (ASS), communication styles, triggers, and feasible and 100% accepted at our institution. The
previous experiences were used to create individualized individual nature of anxiolysis plans was considered a
care plans in the preoperative clinic. Emotion and sedation strength of the protocol.
scores in the same day surgery unit, at anesthesia
induction, and in the postanesthesia care unit were Résumé
recorded. Acceptance was obtained from nurses, Objectif Lorsque des enfants souffrant d’un trouble du
anesthesiologists, and parents. Feasibility criteria spectre de l’autisme (TSA) sont à l’hôpital, leurs difficultés
included the recruitment rate, adherence to protocol, en matière de socialisation, de communication et de
data collection, and patient follow-up. comportement peuvent être exacerbées. L’objectif de
Results Eighteen patients were enrolled in this pilot study. cette étude était d’établir la faisabilité d’un plan
All feasibility criteria including recruitment, adherence to d’intervention périopératoire optimisé.
study protocol (97%), and follow-up (94%) were met. Méthode En nous fondant sur les commentaires des
Fifteen (83%) patients were nonverbal and minimally parents et des professionnels des soins de santé, un
protocole comprenant des modifications de
l’environnement, des plans de gestion de l’anxiété, des
Electronic supplementary material The online version of this ensembles d’ordonnances spécialisés et le soutien d’un
article (https://doi.org/10.1007/s12630-019-01410-y) contains sup- spécialiste de l’enfance a été mis au point sur une période
plementary material, which is available to authorized users.
de neuf mois. Les scores de sévérité de l’autisme (SSA), les
A. Whippey, MD, FRCPC (&)  L. M. Bernstein, MD, styles de communication, les déclencheurs et les
FRCPC  D. Reddy, MD, FRCPC expériences passées ont été utilisés afin de créer des
Department of Anesthesia, McMaster University, 1200 Main St plans d’intervention personnalisés en clinique
West, Hamilton, ON L8S 4K1, Canada préopératoire. Les scores d’émotion et de sédation ont
e-mail: [email protected]
été enregistrés à l’unité de chirurgie d’un jour, à
D. O’Rourke, CLS l’induction de l’anesthésie et en salle de réveil. L’accord
McMaster Children’s Hospital, Hamilton, ON, Canada sur le plan d’intervention a été obtenu du personnel

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Perioperative management of autism 1185

infirmier, des anesthésiologistes et des parents. Les critères benefit from further training.5,6 This combination of factors
de faisabilité comprenaient le taux de recrutement, results in high perioperative stress for children, parents,
l’observance du protocole, la collecte de données et le and healthcare providers. Lindberg et al. surveyed 12
suivi des patients. parents of children with ASD, many of whom described
Résultats Dix-huit patients ont été recrutés dans cette their perioperative experience as ‘‘disgraceful’’,
étude pilote. Tous les critères de faisabilité, y compris le ‘‘unspeakable suffering’’, and a ‘‘hopeless struggle’’.7
recrutement, l’observance du protocole (97 %) et le suivi Despite its prevalence, children with ASD are historically
(94 %), ont été respectés. Quinze (83%) patients étaient an underserviced group of individuals. Rainey and van der
non verbaux et minimalement interactifs (SSA = 3). Les Walt proposed an integrated preoperative management
déclencheurs fréquents étaient les bruits forts (78 %), les program for children with ASD that focused on early
foules (78 %), et les lumières vives (56 %). Après la mise identification and collection of detailed information
en œuvre du protocole, 15 (83 %) des inductions regarding specific triggers.8 Anesthesia-related protocols
anesthésiques ont été décrites comme excellentes. Dix previously focused on sedating combative behaviour, but
plans de prémédication différents ont été utilisés. Les behaviourally informed interventions are improving clinical
parents ont estimé que le plan d’intervention personnalisé, outcomes.9 Individualized plans that minimize known
la médication anxiolytique et le soutien du spécialiste de stressors have been shown to decrease non-compliance at
l’enfance étaient bénéfiques. Tous les intervenants (100 %, induction from 50% to 17%, without the use of
c’est-à-dire personnel infirmier, anesthésiologistes et premedication.10 A systematic review by Koski et al.
parents) étaient d’avis que le programme devrait se stressed the importance of individualized care when
poursuivre. designing a protocol to minimize stress in children with
Conclusion Nous avons démontré qu’un plan ASD. Three main themes emerged relating to the
d’intervention périopératoire multidisciplinaire development of a perioperative care pathway: 1)
spécialement conçu pour les enfants souffrant de TSA collaborating with the caregiver to inform management; 2)
sévère était faisable et accepté à 100 % dans notre developing a process for communicating information from
institution. La nature personnalisée des plans de gestion de caregiver to staff; and 3) modifying the perioperative
l’anxiété a été considérée comme l’une des forces du environment based on patient-specific needs.11
protocole. With these considerations in mind, we developed a
multidisciplinary care plan for children with severe ASD
including both environmental modification and
individualized anxiolysis to improve the perioperative
Autism spectrum disorder (ASD) is diagnosed in 1 in 68 experience (Figure). Herein, we describe its development
children in North America.1 Children with autism may and assess the feasibility of continuing the program.
have difficulties with sensory processing and language
communication skills, and may require strict adherence to
routines or stereotypic behaviours. Abnormal sensory Methods
processing is present in 40–80% of children with ASD.2
Prolonged preoperative fasting times and the wide array of Study design
sensory insults present in the operating room (OR)
environment (e.g., fluorescent lights, crying children, We conducted a pilot trial of pediatric patients with severe
pungent volatile anesthetics) can be problematic in this ASD scheduled for surgery at a single-centre Canadian
population and lead to traumatic inductions, postoperative tertiary care pediatric hospital over a nine-month period
agitation, aggression, and flight behaviour. Children with from March 1 2016 to November 25 2016. Over the course
ASD often have better visual versus verbal communication of the study period, changes to the protocol were made
skills and may have difficulty interpreting social cues.3 In a based on parental feedback. This pilot study was conducted
parental survey in 2013, Kopecky found only 23% of after local Research Ethics Board approval (Hamilton
children expressed their needs verbally.4 Concomitant Integrated Research Ethics Board #15-168) and was
medical issues, psychologic concerns (hyperactivity, reported in line with the CONSORT (Consolidated
obsessive-compulsive behaviours, tics), and intellectual Standards of Reporting Trials) guidelines.12
disability may further complicate behavioural challenges.4
Because of fundamental differences in communication Participants
style, healthcare providers often feel ill-equipped to
communicate with a child with ASD and feel they would Patients were enrolled from the preoperative clinic at the
discretion of the pediatric anesthesiologist. All pediatric

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1186 A. Whippey et al.

Special Accommodaons Perioperave Care

Pathway

Early paent idenficaon - surgeon's office or in preop clinic

Expedited preop visit, Ausm Assessment performed
Paent idenfied on OR booking sheet as "Special
Accommodaons"

Admit direct to SDS isolaon room (SDS processes registraon)

Child life support for child and family
Individual sedaon as per anesthesia from preop clinic +/- IV
start

Direct to OR: limit personel, IV fluid bolus, PR Tylenol and PONV

prophylaxis, S/L IV
Parental presence with childlife support
Parental Feedback while child in OR

PACU- early parental presence, early removal IV, quiet recovery

bay

Discharge home from PACU

Follow up phone call 3 days later

Figure Special accommodations care pathway flow diagram at start of pilot trial. IV = intravenous; preop = preoperative; OR = operating room;
PACU = postanesthesia care unit; PR = per rectum; PONV = postoperative nausea and vomiting; SDS = same day surgery; S/L = saline lock

patients are seen preoperatively at our institution. Any Material [ESM]). Patients were assessed using a four-level
child aged three to 17 yr with symptoms of severe ASD ASS developed by Hudson to communicate level of
was eligible; nevertheless, patients that were nonverbal, severity (eAppendix 1, available as ESM).14
had a history of traumatic inductions, or exhibited inability Nevertheless, severity scores were re-coded and reported
to cope during the preoperative appointment were using the more recent three-level scale described in the
prioritized. Only patients with procedures (dental, Diagnostic and Statistical Manual of Mental Disorders, 5th
urology, otolaryngology, orthopedic) booked in the main Edition.15 Along with information regarding specific
OR were included, as procedures in outpatient areas are triggers and the anticipated level of sedation required, the
covered by a separate sedation service. Children \ three pediatric anesthesiologist in the preoperative clinic would
years of age were not included because there is usually no develop a ‘‘Special Accommodations protocol’’ with the
formal diagnosis of ASD at this age.13 Consent was family including pre-procedure individualized anxiolysis
obtained from caregivers at the time of enrollment by a medication and environment modification. A specialized
research assistant after being approached by the child life order set (eAppendix 2, available as ESM) outlined options
specialist (CLS). for medication including midazolam (0.25 mgkg-1 or 0.5
mgkg-1) and/or ketamine (3 mgkg-1 or 6 mgkg-1) with
Study protocol the medications to be given orally or intramuscularly
(individually or in combination). Routine anti-sialagogues
A psychosocial assessment including both observation and were not used. Medication doses were based on previous
parental feedback was completed preoperatively by the studies that examined optimal doses for anesthetic
CLS (eAppendix 1, available as Electronic Supplementary premedication in children with ASD.16-19 Patients were to

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be booked as the first case of the day and identified on the admission to the OR, quality of anesthetic induction,
main OR list as ‘‘special accommodations’’. The npo times presence of emergence agitation, nausea/vomiting, and
were not altered from institutional policy. Wait times in the time to discharge were also recorded.
preoperative clinic were minimized for patients with ASD. Formal feedback and post-intervention comments were
Surgeons were asked to identify patients with severe ASD collected from parents, SDS nursing staff, and anesthesia
when booking clinic appointments. and PACU nursing staff. Parents were asked to compare
On the day of surgery, patients had an expedited this experience with previous OR experiences using a
preoperative course. Normally, patients are admitted 1.5 hr paper questionnaire filled out while the child was in the
prior to surgery and have multiple transitions—i.e., OR. Parents were asked specifically what interventions
admission office, same day surgery (SDS) intake, and were helpful during their stay, what could have been
group preoperative holding area (with multiple children improved, whether the child had difficulties during their
and families). Children with special accommodations were stay, and what was done.
admitted 1 hr prior to their procedure directly to a private
quiet room away from non-sedated children. They were Outcomes
attended by a CLS and SDS nurse. Patients were not
required to change clothes or have routine vitals done. The primary outcome was the feasibility of a perioperative
Anxiolysis medication was administered in the clear fluid protocol for children with ASD. Feasibility was defined as
of choice of the child by a parent or the SDS nurse. the ability to enroll ten patients with ASD over a six-month
Intravenous (IV) access was obtained as sedation levels period, greater than 90% adherence to the study protocol,
allowed or based on the child’s individualized plan. An IV and 90% follow-up with caregiver/parent feedback.
was avoided if there was a history of traumatic IV starts. Secondary outcomes included emotion and sedation
The number of personnel in the OR was kept to a scores pre- and post-anxiolysis medication and the
minimum (signs were placed on the OR doors indicating quality of anesthetic induction. Parental satisfaction was
nonessential personnel should keep out) and room lights used both to gauge the efficacy of the intervention and to
were dimmed during the anesthetic induction. The CLS and make modifications to the protocol. The written comments
parents accompanied the patient to the OR; parental from the parents’ completed feedback forms (eAppendix 4,
presence is routine at our institution. Intraoperative available as ESM) were analyzed using established
management was at the discretion of one of the four qualitative thematic analysis; two authors (L.B., A.W.)
pediatric anesthesiologists involved in the study. Parents individually reviewed and inductively coded all of the
were debriefed post-induction by the CLS. written comments to identify meaningful feedback.26,27
Postoperatively, patients were admitted to a quiet Related codes were amalgamated under common
recovery bay with dimmed lights. A specialized order set categories and organized in table form to identify
(eAppendix 3, available as ESM) was used by the recurring thematic patterns. They compared their analyses
postanesthesia care unit (PACU) nurses to guide to ensure the thematic categories comprehensively
monitoring, early IV removal, and direct discharge to captured all of the data and resolved discrepancies
home from the PACU as soon as the patient met usual through discussion.
discharge criteria (a score of 18–20 based on a modified
postanesthesia discharge scoring scale).20 Familiar toys, Statistical analysis
parental presence, and individual coping strategies (e.g.,
music, weighted blankets, and service animals) were The descriptive summary of patient demographics,
utilized on emergence as per the child’s plan. prognostics, and surgical information was reported as
Feasibility was the primary outcome; in addition, count (%) for categorical variables and mean (standard
whether the interventions were perceived as disruptive or deviation [SD]) for continuous variables. The sample size
helpful were also recorded. The patient’s activity level/ was based on the prediction of two to four severely autistic
emotional state were documented at arrival to the SDS, at patients presenting to the OR per month. A sample size of
induction, and in the PACU according to scales derived by ten patients allowed data to be collected over a period of
Gutstein et al.21 These scores have been used and validated approximately six months while still being representative
in studies investigating pediatric premedication using of the larger population study.28
midazolam and ketamine in non-ASD children.22-25 They
have not been validated for children with ASD. Of note,
there is no premedication or perioperative anxiety score
validated for the ASD population. Compliance with
anxiolysis medication, time between sedation and

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Results an unanticipated postoperative admission for more

extensive orthopedic surgery.
Over a nine-month period, 18 patients completed the All feasibility criteria were met including recruitment of
Special Accommodations program, which included two patients/month, 97% adherence to the study protocol,
modifications from the preoperative clinic to discharge 95% data acquisition, and 94% patient follow-up (Table 2).
home from PACU on the day of surgery. There were no Ten different anxiolysis medication combinations were
cancellations, despite 15 (83%) ASS level 3 patients (i.e., used (Table 3). A combination of midazolam and ketamine
nonverbal and minimally interactive) taking part. Many of was utilized in 11 (60%) of the cases. Fifteen (94%) of the
these children had a history of traumatic experiences in the inductions were described as very good or excellent by the
hospital, and 11 (72%) had a history of combative or anesthesiologist managing the case whether via
aggressive behaviour. Age ranged from three to 16 yr with inhalational (61%) or IV (39%) induction (Table 4).
a mean (SD) age of 8 (3.5) years. The most common Sedation increased from a mean (SD) score of 4.2 (0.9)
reported triggers were loud noises and crowds (78%), and pre-sedation to 2.7 (0.9) at induction, following
bright lights (56%). Over half (67%) of patients underwent administration of premedication. Emotion scores
dental procedures. The mean (SD) sedation time decreased from a mean (SD) of 1.9 (0.9) to 1.3 (0.5) at
preoperatively was 38.6 (15.7) min, mean (SD) procedure induction.
duration was 81 (43) min and mean (SD) PACU stay to Parental feedback identified several positive elements of
discharge home was 93 (37) min (Table 1). One patient had the program (Table 5). Ten parents (55%) commented on
the benefit of the personalized approach/sedation plans and

Table 1 Patient characteristics of Special Accommodations program participants

Demographics Descriptive statistic (n = 18)

Age (yr); mean (SD) 8.1 (3.5)

Weight (kg); median (min, max) 28.8 (11.1, 100.0)
Gender (male); n (%) 16 (89)
Autism severity*; n (%)
Severity Level 3 (requires very substantial support) 15 (83)
Severity Level 2 (requires substantial support) 1 (6)
Severity Level 1 (requires support) 0 (0)
Missing 2
Sensory dislikes/triggers; n (%)
1. Crowds 14 (78)
2. Loud noises 14 (78)
3. Bright lights 10 (56)
4. Touch 9 (50)
5. Smell 3 (17)
6. Other 3 (17)
History of aggressive/combative behaviour; n (%) 11(73)
Missing 3
Type of surgery; n (%)
Dental 12 (67)
Otolaryngology 3 (17)
Urology 2 (11)
Orthopedic 1 (6)
Time from admission to surgery (sedation time - 8am surgery only); mean (SD) 38.6 (15.7)
Duration of procedure; mean (min,max; SD) 81.3 (15, 208; 43)
Time from PACU to discharge; mean (min, max; SD) 93.4 (54,180; 37)
14
*Autism Severity Scores were initially recorded on a four-level scale developed by Hudson (2006). These have been re-coded as per the three-
level scale outlined in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition.15 PACU = postanesthesia care unit; SD = standard
deviation

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Perioperative management of autism 1189

Table 2 Assessment of feasibility objectives

Feasibility objective Feasibility criteria Result Conclusion

Recruitment rate 10 patients per 6 months (1.67 18 patients recruited over 9 months (2 patients/month) Feasible
patients/month)
Adherence to study Minimum 90% of adherence 104/107 adherence check points (97%) Feasible
protocol: check points 17/18 individualized plans documented
• Individualized plan 18/18 order set completed
created, order set filled
18/18 admitted to SDS with supports (quiet room, CLS)
• Admission to SDS with
16/17 accepted premedication if planned
supports
18/18 completed surgery
• Move directly to OR
17/18 discharged home (1 unanticipated admission)
• PACU/ direct discharge
home
Parental consent rate* 18/18 (100%) Feasible
consented
Consent rate ¼ ##approached
Ability to collect data [ 90% fields collected 1,180/1,246 (94.7%) Feasible
More than 90% of fields collected contained information that was
not considered missing
Follow-up rate At least 80% of parents provided 17/18 (94%) – More than 80% of parents provided at least some Feasible
follow-up feedback information during the follow-up period
* Patients were screened beforehand to see if they fit the study population before being approached
CLS = child life specialist; OR = operating room; PACU = postanesthesia care unit; SDS = same day surgery

Table 3 Premedication plans used to facilitate either intravenous placement or transition to operating room and inhalational induction
Planned premedication (po, unless stated) Rescue dose n

None 1
Midazolam 0.5 mg – 2
Midazolam 0.25 mgkg-1 ? ketamine 3 mgkg-1 – 4
Ketamine 3 mgkg-1 po 1
Midazolam 0.5 mgkg-1 ? ketamine 1 mgkg-1 – 1
-1 -1
Midazolam 0.5 mgkg ? ketamine 3 mgkg – 4
Ketamine 3 mgkg-1 po 1
Midazolam 0.5 mgkg-1 ? ketamine 6 mgkg-1 – 1
Ketamine 3 mgkg-1 Ketamine 1 mgkg-1 IM 1
Ketamine 3 mgkg-1 po 1
-1
Ketamine 2 mgkg IM – 1
IM = intramuscular; po = per os

eight parents (44%) commented on the presence of CLS the program should continue. Perceived strengths of the
workers. The use of preoperative anxiolysis medication program included its multidisciplinary structure, the use of
(33%), parental presence at induction and emergence preoperative anxiolysis medications, and its family-centred
(33%), decreased wait times (28%), the patience approach. One of the issues raised was the increased
displayed by healthcare providers (27%), and the use of a nurse:patient ratio that was required in PACU for the
quiet room (28%) were also noted as strengths of the Special Accommodations program patients. Early feedback
program by parents. also included comments about the need for early
Feedback from healthcare providers was also very identification of patients requiring special
positive (Table 6). With 100% acceptability, healthcare accommodations.
providers (SDS, OR, PACU, and anesthesiologists) felt that

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Table 4 Descriptive characteristics of intraoperative special tertiary pediatric hospitals) adapted this approach into a
accommodations formalized process. In 2017, Swartz et al. reported
Characteristics n (%) perioperative care plans for children with ASD, resulting
in 90% overall cooperation at induction of anesthesia with
Inhalational vs IV induction
preoperative sedation administered to only 38% of the
Inhalation induction 11 (61) entire cohort (50% in the severe group).29 One benefit of
IV induction 7 (39) our protocol identified by parents was the presence of the
Quality of anesthetic induction CLS. The addition of a CLS helped to focus coping
1. Poor (afraid, combative, crying) 0 strategies for the child and parent and ensure individualized
2. Fair (moderate fear, not easily calmed) 1 (6) plans were carried out. Some of these plans included
3. Good (slight fear, easily calmed) 5 (28) service animals in the SDS holding area, mobilizing with
4. Excellent (unafraid, cooperative) 10 (56) supervision while waiting for the OR, removing siblings
Missing 2 and/or other additional personnel from the patient’s room,
Sedation scores in SDS (prior to premedication if applicable) acting as a liaison between healthcare providers and
1. Barely arousable, needs shaking/shouting to arouse 0 family, and providing distraction.
2. Asleep, eyes closed, arouses easy 1 (6) Our pilot trial targeted children with severe ASD and
3. Sleepy: eyes open but less active and responsive 2 (11) consequently many plans utilized anxiolytic premedication.
4. Awake 7 (39) The type of premedication varied widely from child to
5. Agitated 8 (44) child and was determined by considerations such as taste
Sedation score at induction sensitivity, compliance with oral medication, previous
1. Barely arousable, needs shaking/shouting to arouse 2 (11) experience with pre-induction sedation, expected level of
2. Asleep, eyes closed, arouses easy 3 (17) cooperation, and body mass index. Currently, there is
3. Sleepy: eyes open but less active and responsive 10 (56) insufficient evidence in the literature to support one
4. Awake 3 (17) medication over another, although some reviews have
5. Agitated 0 suggested using alpha-agonists with midazolam over
Emotion score in SDS (prior to premedication if applicable) ketamine because of the side effect profile.3 At the time
1. Calm 5 (31) of this pilot study, dexmedetomidine was not available in
2. Apprehensive/tentative behaviour/withdrawn 9 (56) our hospital.
3. Crying 0 Monitoring in the SDS was a concern at the onset of the
4. Thrashing/crying with arm, leg movement/resistance 2 (13) pilot trial—no patients experienced desaturation or
Missing 2 required supplemental oxygen. In fact, 20% required an
Emotion score at induction additional dose of medication to achieve a suitable level of
1. Calm 12 (66.7) sedation. Arnold described intramuscular (IM) ketamine
2. Apprehensive/tentative behaviour/withdrawn 6 (33.3)
use in 85% of patients with ASD (not stratified by
3. Crying 0
severity)30; 11% of individual plans utilized IM ketamine
(one elective, one rescue) in our study. Although effective,
4. Thrashing/crying with arm, leg movement/resistance 0
routine use of IM medications can lead to increased anxiety
Complications - post sedation
with repeated visits and may not be a sustainable option.18
Nausea/vomiting 2 (11)
Ketamine has been associated with emergence agitation
Increased secretions 1 (6)
and unwanted side effects, particularly increased secretions
Aggressive behaviour on emergence 1 (6)
and nausea. Despite other studies citing no adverse effects
Additional preoperative anxiolysis medication required 4 (22)
of ketamine,29 the two episodes of nausea observed in this
IV = intravenous; SDS = same day surgery pilot study were both after IM ketamine had been
administered. Given the potentially unfavourable side
effect profile of ketamine and longer recovery time at
Discussion higher doses,31 other medications, including
dexmedetomidine, will be considered in future studies.32,33
This pilot trial shows that an individualized perioperative In this pilot, anesthetic management was at the
care plan using a multidisciplinary team is feasible at our discretion of the anesthesia provider; nevertheless,
institution to improve the perioperative experience for variability in technique was minimized by limiting the
children with ASD. The concept of individualized sedation number of providers. Patients were given 1–2 lgkg-1
planning is not novel; nevertheless, only recently have a fentanyl at the beginning of the case and maintained on
small number of Canadian institutions (predominantly at sevoflurane for the procedure. As is standard practice at our

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Table 5 Themes from parental feedback regarding Special Accommodations protocol

Parental feedback Exemplar quote n (%)
theme

Personalized approach ‘‘(Staff) listened to suggestions, which is what made this our best experience ever!’’ 10
‘‘Wonderful to see that there is extra and different types of care given to children and families with special (55)
needs.’’
‘‘This program is absolutely necessary for families and patients with special needs!! Thank you so much for the
options—best experience so far’’
CLS (distraction, ‘‘(CLS) was encouraging and supportive—could not have done it without her!’’ 8 (44)
iPad, toys)
Preoperative sedation 6 (34)
Parental presence ‘‘Playing a favourite show, letting him cuddle with mom were great strategies’’ 6 (34)
Decreased wait times 5 (28)
Patient staff ‘‘Staff were professional and patient. Took the time necessary for our son to complete each step’’ 5 (28)
Quiet room 5 (28)
CLS = child life specialist

institution, ondansetron (0.1 mgkg-1), dexamethasone (0.1 patients were discharged directly home. This was shorter
mgkg-1), and Tylenol 40 mgkg-1 pr were administered than the combined PACU/SDS stay of approximately 150
intraoperatively. Three patients required morphine (0.02– min that most patients experience (most patients stay 40–
0.05 mgkg-1) for procedures with expected postoperative 60 min in PACU and 90 min in SDS before discharge home
pain—tonsillectomy (n = 2) and osteotomy (n = 1). As at our institution). As in other aspects of the protocol there
more concerns are raised about the potentially decreased appeared to be a learning curve with the last four patients
oxidative capacity and impaired methylation in children being discharged from PACU in 60 min with an overall
with ASD,34,35 the use of short-acting medications and trend of decreasing recovery time. Although we cannot
avoidance of certain drugs including nitrous oxide, decrease the nursing ratio, we have been able to minimize
prolonged infusions of propofol, or adding B12 the time it is required. Additionally, a very agitated patient
supplementation may be considered. Balancing the need with ASD will definitely require an increased nursing ratio.
for pre-induction sedation and attempting to minimize drug One patient did have an extended PACU stay because of an
exposure in patients with ASD is complex; traumatic unanticipated admission (surgical cause) and unavailability
inductions have been associated with postoperative general of an inpatient bed, which resulted in the only incidence of
anxiety, enuresis, night-time crying, and temper tantrums. combative behaviour. This highlighted the need for our
These changes are usually transient but may persist for up protocol to include expedited inpatient transfers.
to one year in some individuals.36 Parental feedback weighed heavily into our protocol
The overwhelming feedback we received from design. Several suggestions were made during the pilot for
healthcare workers was that this program should further environment modification including visual
continue. These results support the work of Thompson communication boards, additional parent information
and Tielsch-Goddard who found increased staff interest in specific for children with ASD, and the need for
optimizing the surgical experience for children with ASD consistency across visits, which were implemented.
and increased satisfaction when additional attention is Unfortunately, we were unable to complete reliable post-
given to minimizing stress for families in the perioperative discharge home follow-up. Parental feedback was obtained
period.6 Consistency in staff members caring for a patient post-induction while their child was in the OR. Although
with ASD can be very beneficial.9 In our system, the this was a reliable way to obtain feedback, information on
patient is seen by different staff at the preoperative visit, postoperative behaviour changes, sleep disturbance, and
before the OR and postoperatively; this is a potential area postoperative nausea and vomiting after discharge was not
for improvement in the future. The increased nurse:patient collected. This is an important area for improvement in
ratio both in SDS and PACU was identified by healthcare future studies.
providers as a potential difficulty. Nurses will typically be The success of the protocol was assessed using feedback
assigned to at least two patients in SDS and in PACU (once from parents and healthcare providers, and using sedation
patients are awake and responding to commands). Mean and emotional scales. The sedation and emotional scales
recovery time in the PACU was 95 min, at which point were previously developed to assess effectiveness of

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1192 A. Whippey et al.

Table 6 Themes from healthcare provider feedback regarding Special Accommodations protocol
Healthcare provider feedback Exemplar quote
theme

Program should continue ‘‘Amazing program, I hope we learn more about it and it becomes part of our practice’’ – OR RN
‘‘Very worthwhile - particularly for family and patient’’ – PACU
Multidisciplinary structure is ‘‘Appreciated the structure, communication, and support from all services. Everyone had the same plan and
important expectations’’ – SDS RN
‘‘…Great supports with AA, Dr. (anesthesiologist), sedation, child life worker’’ – SDS RN
Preoperative sedation can improve ‘‘Absolutely helpful for patient, family, and healthcare team to have this preop sedation prior to the OR.
experience Very seamless transition into the OR with the child sedated and IV in place’’ – Anesthesia
‘‘Excellent result from premedication. Seeing patient preop and day of surgery was night and day!’’ –
Anesthesia
‘‘Helped patient adapt without undue distress; patient-centred, wonderful!’’ – OR RN
Helpful for families ‘‘Overall beneficial to staff and patient. Quiet and calm on induction and emergence.’’ - Anesthesia
‘‘I think this intervention is very beneficial to the patient as well as the family. It might delay OR time but it
is less traumatic to the patient’’ – OR RN
Increased nursing ratio required in ‘‘A little challenging as nursing ratio 1:1’’ – PACU
PACU ‘‘1:1 nursing ratio for 60 min … woke up very calm and had no issues’’ – PACU
OR = operating room; PACU = postanesthesia care unit; RN = registered nurse; SDS = same day surgery

preanesthetic medication.22,23,25 Future studies should Author contributions Amanda Whippey contributed to all aspects
more precisely capture the anxiety level of patients of this manuscript, including study conception and design;
acquisition, analysis, and interpretation of data; and drafting the
distinct from their level of sedation; this may require article. Leora Bernstein contributed to the study conception and
using a different scale. Patients with ASD are believed to design, analysis of the data, and drafting of the manuscript. Debra
have a higher incidence of anxiety; nevertheless, no O’Rourke contributed to the study conception and design, and
anxiety scale is currently validated for autistic children.37 acquisition of data. Desigen Reddy contributed to all aspects of this
manuscript, including study conception and design; acquisition,
As the larger study will include both severe and higher analysis, and interpretation of data; and drafting the article.
functioning patients with ASD, having feedback from the
patients directly will be an important additional source of Funding None declared.
information.
This pilot study shows that a multidisciplinary
perioperative care pathway that improves the
perioperative experience for severely autistic children and
their families is feasible at our institution, which previously References
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