Clinical Pediatrics http://cpj.sagepub.com/
Autism in the Emergency Department Justine Heather Cohen-Silver, Barbara Muskat and Savithiri Ratnapalan CLIN PEDIATR 2014 53: 1134 originally published online 15 July 2014 DOI: 10.1177/0009922814540983 The online version of this article can be found at: http://cpj.sagepub.com/content/53/12/1134
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540983
research-article2014
CPJXXX10.1177/0009922814540983Clinical PediatricsCohen-Silver et al
Article
Autism in the Emergency Department
Clinical Pediatrics 2014, Vol. 53(12) 1134–1138 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0009922814540983 cpj.sagepub.com
Justine Heather Cohen-Silver, MSc, MD, FRCPC1, Barbara Muskat, MSW, PhD1, and Savithiri Ratnapalan, MBBS, Med MRCP, FRCPC, FAAP1,2,3
Abstract Background. This is a retrospective chart review of autistic patients presenting to the emergency department (ED) in a tertiary care pediatric center during the year 2011. Results. There were 160 ED visits by 130 patients, 25% of visits were repeated, and 20% were admitted to the hospital. There were 126 (79%) male and 34 (21%) female patients mean age of 12 years, 79% had comorbid health conditions. Forty percent were CTAS 2 (Canadian Triage Acuity Score) acuity, 42% of visits were CTAS 3 acuity, and 7% rated their pain as “severe.” Visits were for behavior (10%), neurological concern (13%), 3% dental related, and the remainder were for gastrointestinal infections and other complaints. Average length of stay was 6 hours 21 minutes, with 2-hour wait to start assessment with physician. Conclusions. Autism is a prevalent diagnosis and patients with autism are accessing the ED. We hope to use these demographic findings to better serve these patients and their families. Keywords autism, emergency department, paediatric
Introduction Autism is described by the Canadian Paediatric Society as “a neurobehavioral disorder characterized by impairment of social relatedness, delayed and disordered communication and restrictive, pervasive and stereotypic behavior patterns.”1(p267) Cognitive abilities of patients with autism range from developmental delay to gifted.2 The diagnosis of autism has recently been refined within the DSM-5 to exclude subtypes. Previously a diagnosis of autism focused on 3 domains (social reciprocity, communication, and restrictive and repetitive behaviors), the latest diagnostic criteria include focus on 2 main domains, namely social communication and restricted behaviors.3 There have been multiple studies that describe the prevalence of autism with the estimated prevalence increasing since the 1970s.4 The male to female ratio is approximately 3.7:1.5 During the 1990s, the prevalence of autism was estimated at 1 in 1000.4,5 More recent studies determine the prevalence of autism as approximately 1 in 50 to 500 and describe autism as the most prevalent of all childhood neurodevelopmental disorders.7-12 Children with autism may have impaired social interaction and communication and may have difficulty facing alterations in their daily routine.6,13 Extreme anxiety experienced by children and youth with autism spectrum disorder (ASD) when faced with new or unfamiliar
situations such as those experienced in hospital settings often manifests as difficult behavior causing challenges for the child, family, and health care team. Children with autism have been shown to have an increased relative risk for injury and increased relative risk for emergency room visits for injury.14 Children with autism also have an increased risk of epilepsy15 and abdominal complaints16 that may result in an emergency room visit. The emergency department (ED) is a loud, busy place where patients face multiple types of sensory stimulation. There is some limited research looking at how to best serve families and patients with autism in the ED,17 however, challenges of identifying and managing patients with special needs in the ED are ongoing and patient dependent. The purpose of this study was to gain an understanding of the demographic characteristics, presenting complaints and outcome of pediatric patients with ASD visiting a tertiary care pediatric ED.
1
The Hospital for Sick Children, Toronto, Ontario, Canada The Dalla Lana School of Public Health, Toronto, Ontario, Canada 3 The University of Toronto, Toronto, Ontario, Canada 2
Corresponding Author: Justine Heather Cohen-Silver, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, M5G 1X8, Canada. Email: [email protected]
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Cohen-Silver et al
Method
Table 1. Gender, Age, and Number of Health Issues.
After obtaining institutional research ethics approval, a retrospective chart review of all patients under 18 years of age, with an International Classification of Diseases (ICD-9 or ICD-10) code flagged on their chart for diagnosis of autism, Asperger’s syndrome or ASD who presented to the ED between January 1, 2011 and December 31, 2011. Demographic information, presentation, management, and outcome information were extracted from the electronic medical records by a single investigator (JCS). Statistics were then derived from the data set. Standard quantitative analyses were conducted, using Microsoft Excel formulas.
Count
Percentage
126 34 12 127 2
79 21 79
Male Female Average age Multiple diagnoses by visit Median number diagnoses
Percent of Visits by Age Group (%) 22
Age Group
36
Results
6-9
There were 160 emergency room visits documented by 130 patients with a diagnosis of ASD during the study period. Fifty percent of repeat visits to the ED were noted to follow a recent prior visit, range of 1 to 15 days after first visit to ED. Of the 160 hospital visits, 33 patients were admitted to the hospital (20%). There were 72 visits, (44%) to the ED that occured outside of regular office hours of 8 am to 4 pm, 51 of these visits (71%) had an emergency assessment triage acuity score of 2 or 1 indicating a high-acuity health issue.18 There were 126 (79%) males and females 34 (21%) female visitors with a mean age of 12 (Table 1). Of the 160 visits, 127 patients (79%) had more than 1 chronic health diagnosis. The median number of medical diagnoses per patient was 2. None of the patients with ASD were younger than 6 years. The majority of visits were in the 10- to 13year-old age-group (43%, Figure 1). Summarizing the reasons for visit, 10% were for behavior-related issues including situational crisis and homicidal behavior, and 13% were for neurological complaints including seizures. Only 3% were for dentalrelated issues (Table 2). The Canadian Triage Acuity Score (CTAS) ranges from CTAS 1 relating to high-acuity medically unwell patient up to CTAS 5 nonurgent medically stable patient with specific medical concern.18 The majority of hospital visits were considered CTAS 2 and 3 (Figure 2 and Table 3). Forty percent were CTAS 2 acuity and 42% of visits were CTAS 3. Only 12 patients within the 160 visits (7%) rated their pain as “severe” or gave it a numerical value of 8 to 10 out of 10. Overall, in 2011, 10% of all visitors to the ED required hospital admission. This is in contrast to our
10-13
43
14-17
Figure 1. Percentage of visits by age-group.
80
CTAS Triage Acuity Score
70 60 50 40
64
30
67
20 25
10 0
2 1
2 2
3
4
5
CTAS Score
Figure 2. Number of patients by available Canadian Triage Acuity Score (CTAS).
sample in which double the amount of visitors, 32 (19.7%) were admitted to the hospital. The average overall length of stay in the ED was 381 minutes (6 hours 21 minutes), median length of stay of 322 minutes (5 hours 22 minutes). Patients waited 1 hour on average to be placed in a room and almost 2 hours on average to start assessment with a physician (Table 4), this is comparable to average wait times and time to see physician at our institution in 2011.
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Clinical Pediatrics 53(12)
Table 2. Triage Presenting Complaint. Count
Percentage
17 20 5 10 12 25 73
10 13 3 20 15 15 45
Behavior/situational crisis/homicidal behavior/behavior change/concern for patient’s welfare Seizure/altered level of consciousness/paresthesia Dental Infection Injury Vomiting /nausea/diarrhea/constipation/abdominal pain Other (fever, headache, cough/congestion, skin infection, etc)
Table 3. Canadian Triage Acuity Score by Age-Group. Canadian Triage Acuity Score Age (Years)
1
2
3
4
5
Total (%)
6-9 10-13 14-17
1 1 0
11 26 27
14 28 25
9 11 5
0 2 0
35 (22) 68 (43) 57 (36)
Table 4. Wait Times in Emergency Department.
Average Median N
Length of Stay in Emergency Department (Minutes)
Time From Registration to Placement in Room (Minutes)
Time From Registration to Seeing Medical Doctor (Minutes)
381 322 143
57 29 153
116 78 151
Discussion In 2011, there were 62 092 patients who frequented the institution’s ED overall, thus reportedly 2% of visits were patients with ASD. This number is subjectively smaller than the number of autistic patients seen in the ED per week, this speaks to a lack of collecting information that would highlight that a patient has ASD and flag this diagnosis in our chart review. There were 160 total visits to the ED of patients with ASD but 32 patients visited the ED on multiple occasions, overall 130 patients with ASD came to the ED in 2011. There were 72 visits outside the hours of 8am and 4pm (44%). This information is useful in identifying the number of patients (almost half) who visited the ED outside of primary care office hours. Of these visitors, 71% have a presenting complaint that is considered a high CTAS score of 1or 2. This speaks to the fact that the emergency room is being accessed appropriately after hours for high-acuity health issues. It is informative that 25% of patients with ASD visited the ED repeatedly over 2011. Of the 32 repeat visits, 16 (50%) were noted to follow a recent prior visit, range
of 1 to 15 days. Based on health utilities analyses completed in the United Kingdom, children with autism have a significantly higher use of health services than children without these diagnoses. One might consider if this factor can be extrapolated to explain frequent repeat access of our ED by families whose children have ASD.19 The majority (80%) of visitors with ASD to the ED were male. This is not surprising considering that the proportion of males diagnosed with autism is 5:1,20 yet one can also consider if in fact female patients with autism did not access the ED as frequently. Understanding the difference between these patients and families may help identify why patients with ASD visit the ED and how to best serve their needs. Our study shows that none of the patients flagged as having ASD were younger than 6 years. Is this because parents aren’t self-reporting autism before age 6? This is particularly surprising as ASD is generally diagnosed by age 3 years and early and intensive intervention services are generally in place from this age, therefore parents are aware of their child’s diagnosis. We need to become better at capturing this important information as we can
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Cohen-Silver et al look at making modifications for patients with ASD and providing extra support for their family while in the ED. This support may include being placed in a room when possible more quickly and having access to sensory materials, which may be calming for a child with ASD. The majority of visitors (79%) with autism presenting to the ED have multiple medical issues (median of 2 comorbid health conditions per visit), this may affect the decision for families to visit the ED versus a primary health care provider. Evidence supports this finding as autism is one of the 6 most prevalent chronic health conditions in children with developmental disabilities among other comorbities.21 One compelling study describes that children with developmental disabilities (including autism, ADHD [attention-deficit/hyperactivity disorder], other psychiatric and developmental disorders) were 2 to 8 times more likely to have more than 9 health care visits, 7.5% had a medical procedure, 26.6% see a mental health professional, and 10.8% had visited an emergency room.22 Almost half of the ED visits were for high-acuity presenting complaints (44%). Seeing as the majority of patients had more then one chronic health condition, it is possible that families view the hospital ED as the best place to assess their medically complex child, perhaps this can explain why 59% of patients were CTAS 3 to 5 indicating that the majority of presenting patients did not have a high-acuity issue when coming to the ED. The distribution of CTAS score by age-group is similar. Of note, the CTAS score is determined by various variables that accurately predict severity of patients’ health issues to determine how quickly patients require assessment by the health care team. Pain is taken into consideration when assigning CTAS score.18,23 Among the criteria for autism within the DSM-IV and now DSM5, sensory abnormalities are a well-accepted symptom in autistic patients. Studies have demonstrated that patients with autism have a decreased or altered pain response. One study demonstrates that 40% of children with autism between 20 and 54 months of age did not perceive pain accurately.24 This speaks to the paucity of patients in our data set who reported severe pain (7%). Perhaps we need to consider an alternative method in assessing pain in patients with ASD and consider when triaging these patients that pain scores may not be accurate. Ten percent of patients with ASD presented with behavioral issues including crisis and homicidal behavior. We need to consider what issues of this nature are bringing patients with ASD to the ED and how the ED can facilitate helping these patients. This issue is especially relevant considering the limitations our hospital has with minimal psychiatric bed space and crisis resources we can offer, we need to consider how to help intervene for these families before behavior is reaching a
crisis point. Fifteen percent of ED visits for patients with ASD were for neurological concerns including seizures. The prevalence of epilepsy in children with autism in one study was quoted as 30%.15 Seizures are acute events that require urgent medical attention. Fifteen percent of visits were for gastrointestinal-related issues (nausea, vomiting, diarrhea, abdominal pain, constipation). Children with autism have a known increased prevalence of gastrointestinal-related concerns; one study determined that the prevalence of gastrointestinal-related issues in a cohort of children with autism was 25%.16 The data in our study complements this finding and shows that for families, gastrointestinal presenting complaint can represent an emergency. Overall there are a majority of ED visits (45%) for complaints including cough/congestion, earache, fever, and injury. Studies demonstrate that children with autism have many challenges managing their oral care resulting in dental issue.25 It was surprising to see that only 3% of patients with ASD presented to the ED with dental emergencies. The low number of patients with ASD presenting with dental complaint may be well explained by the fact that patients with special needs can easily gain access once they are patients of our hospital’s dental clinic to an urgent dental clinic visit without going through the ED for referral. In 2011, almost 20% of patients with autism in our study were admitted to the hospital. This is a very interesting finding as in the overall population in 2011 visiting the ED about 10% of patients were admitted to the hospital. This finding may also relate to the overall health of patients with autism presenting to the ED and the nature of their presenting complaint. Patients are spending on average 6 hours in the ED, about an hour to be placed in a room, and almost 2 hours to be assessed for the first time by a physician, this is comparable to wait times for all patients in the ED in 2011. Patients with autism have trouble coping outside of their routine and have trouble coping with excessive sensory stimulation.3 It goes without saying that autistic patients who are faced with prolonged wait times in a loud, bright, and noisy emergency room albeit when they have an acute medical issue are at increased risk for behavior escalation and not coping for the duration of their ED visit.
Study Limitations Limitations of this study include the fact that it is a retrospective chart review where unless the chart was flagged as containing the ICD diagnosis of autism, the chart was not included in our study. Therefore, for patients to be included in the study, they needed to be
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asked, identified, and coded as patients with a diagnosis of autism. Considering the number of charts included in this study (160) versus the number of patients visiting the ED (>62 000) and the known prevalence of ASD as high as 1 in 50,7 there is a disparity in our data, and we are therefore not recognizing all patients with autism who frequent the ED. Our study is completed on patients at a tertiary care pediatric emergency room in an urban center. These results may therefore not be generalizable to a population of all autistic children.
Conclusions This study presents the demographics for patients with ASD visiting a tertiary care hospital ED in 2011. Patients with autism visit the ED, we are not always accurately recognizing their diagnosis, these patients frequently have multiple health issues, and many return to the ED for access to care. We need to use these findings to adapt our ED to help optimally serve these patients and their families. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
References 1. Burrows K; Canadian Paediatric Society; Mental Health and Developmental Disabilities Committee. Early intervention for children with autism. Paediatr Child Health. 2004;9:267-270. 2. Brasic JR. Pervasive developmental disorder: autism. Emed J. 2001. http://www.emedicine.com/PED/topic 180.htm. Accessed June 11, 2014. 3. Hyman SL. New DSM-5 includes changes to autism criteria. AAP News. June 14, 2013. http://aapnews.aappublications.org/content/early/2013/06/04/aapnews.20130604-1. Accessed June 12, 2014. 4. Williams JG, Higgins JP, Brayne CE. Systematic review of prevalence studies of autism spectrum disorders. Arch Dis Child. 2006;91:8-15. 5. King M, Bearman P. Diagnostic change and the increased prevalence of autism. Int J Epidemiol. 2009;38,1224-1234. 6. Loo CY, Graham RM, Hughes CV. Behavior guidance in dental treatment of patients with autism spectrum disorder. Int J Paediatr Dent. 2009;19:390-398. 7. Wingate M, Mulvihill B, Kirby PS, et al. Prevalence of autism spectrum disorders-Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. MMWR Surveill Summ. 2012;61(3):1-19.
8. Schieve LA, Rice C, Boyle C, Visser SN, Blumberg SJ. Mental health in the United States: parental report of diagnosed autism in children aged 4-17 years 2003-2004. MMWR Morb Mortal Wkly Rep. 2006;55:481-486. 9. Fombonne E. Epidemiology of pervasive developmental disorders. J Pediatr Res. 2009;65:591-598. 10. Centers for Disease Control and Prevention (CDC). Mental health in the United States: parental report of diagnosed autism in children aged 4-17 years—United States, 20032004. MMWR Morb Mortal Wkly Rep. 2006;55:481-486. 11. Chakrabarti S, Fombonne E. Pervasive developmental disorders in preschool children. JAMA. 2001;285:3093-3099. 12. Lafee S. Facing autism, 2002. The Union Tribune. http:// www.uniontrib.com/news/science/20020112999_mzlc12autism.html. Accessed June 12, 2014. 13. Seid M, Sherman M, Seid AB. Perioperative psychosical interventions for autistic children undergoing ENT surgery. Int J Paediatr Otolaryngol. 1997;40:107-113. 14. McDermott S, Zhou Li, Mann J. Injury treatment among children with autism or pervasive developmental disorder. J Autism Dev Disord. 2008;38:626-633. 15. Tuchman R, Cuccaro M., Alessandri M. Autism and epilepsy: Historical perspective. Brain Dev. 2010;32:709-718. 16. Malloy CA, Manning-Courtney P. Prevalence of chronic gastrointestinal symptoms in children with autism and autistic spectrum disorders. Autism. 2002:7:165-171. 17. Henderson DP, Thomas DO. Overview and helpful hints for caring for the ED patient with Asperger’s syndrome. J Emerg Nurs. 2004:30;3:278-281. 18. Beveride R, Clark B, Janes L, et al. Canadian emergency department triage and acuity scale: implementation guidelines. CJEM. 1999;1(suppl): S2-S28. 19. Petrou S, Johnson S, Wolke D, Hollis C, Kochhar P, Marlow N. Economic costs and preference-based healthrelated quality of life outcomes associated with childhood psychiatric disorders. Br J Psychiatry. 2010;197:395404. 20. Centers for Disease Control and Prevention. Data and Statistics for ASD. Atlanta, GA: Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/ autism/data.html. Accessed June 11, 2014. 21. Oeseburg B, Geke J, Dijkstra JW, et al. Prevalence of chronic health conditions in children with intellectual disability: a systematic literature review. Intellect Dev Disabil. 2011:49: 59-85. 22. Boulet SL, Boyle CA, Schieve LA. Health care use and health and functional impact of developmental disabilities among US children, 1997-2005. Arch Pediatr Adolesc Med. 2009;164:19-26. 23. Canadian Triage and Acuity Scale (CTAS) national guidelines. http://www.calgaryhealthregion.ca/policy/ docs/1451/Admission_over-capacity_AppendixA.pdf. Accessed June 12, 2014. 24. Klintwall L, Holm A, Eriksson M, et al. Sensory abnormalities in autism: a brief report. Res Dev Disabil. 2011;32:795-800. 25. Stein LI, Polido JC, Najera SOL, Cermak SA. Oral care experiences and challenges in children with autism spectrum disorders. Pediatr Dent. 2012;34:387-391.
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Autism in the Emergency Department Justine Heather Cohen-Silver, Barbara Muskat and Savithiri Ratnapalan CLIN PEDIATR 2014 53: 1134 originally published online 15 July 2014 DOI: 10.1177/0009922814540983 The online version of this article can be found at: http://cpj.sagepub.com/content/53/12/1134
Published by: http://www.sagepublications.com
Additional services and information for Clinical Pediatrics can be found at: Email Alerts: http://cpj.sagepub.com/cgi/alerts Subscriptions: http://cpj.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav
>> Version of Record - Sep 8, 2014 OnlineFirst Version of Record - Jul 15, 2014 What is This?
Downloaded from cpj.sagepub.com at UNIV MASSACHUSETTS BOSTON on November 11, 2014
540983
research-article2014
CPJXXX10.1177/0009922814540983Clinical PediatricsCohen-Silver et al
Article
Autism in the Emergency Department
Clinical Pediatrics 2014, Vol. 53(12) 1134–1138 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0009922814540983 cpj.sagepub.com
Justine Heather Cohen-Silver, MSc, MD, FRCPC1, Barbara Muskat, MSW, PhD1, and Savithiri Ratnapalan, MBBS, Med MRCP, FRCPC, FAAP1,2,3
Abstract Background. This is a retrospective chart review of autistic patients presenting to the emergency department (ED) in a tertiary care pediatric center during the year 2011. Results. There were 160 ED visits by 130 patients, 25% of visits were repeated, and 20% were admitted to the hospital. There were 126 (79%) male and 34 (21%) female patients mean age of 12 years, 79% had comorbid health conditions. Forty percent were CTAS 2 (Canadian Triage Acuity Score) acuity, 42% of visits were CTAS 3 acuity, and 7% rated their pain as “severe.” Visits were for behavior (10%), neurological concern (13%), 3% dental related, and the remainder were for gastrointestinal infections and other complaints. Average length of stay was 6 hours 21 minutes, with 2-hour wait to start assessment with physician. Conclusions. Autism is a prevalent diagnosis and patients with autism are accessing the ED. We hope to use these demographic findings to better serve these patients and their families. Keywords autism, emergency department, paediatric
Introduction Autism is described by the Canadian Paediatric Society as “a neurobehavioral disorder characterized by impairment of social relatedness, delayed and disordered communication and restrictive, pervasive and stereotypic behavior patterns.”1(p267) Cognitive abilities of patients with autism range from developmental delay to gifted.2 The diagnosis of autism has recently been refined within the DSM-5 to exclude subtypes. Previously a diagnosis of autism focused on 3 domains (social reciprocity, communication, and restrictive and repetitive behaviors), the latest diagnostic criteria include focus on 2 main domains, namely social communication and restricted behaviors.3 There have been multiple studies that describe the prevalence of autism with the estimated prevalence increasing since the 1970s.4 The male to female ratio is approximately 3.7:1.5 During the 1990s, the prevalence of autism was estimated at 1 in 1000.4,5 More recent studies determine the prevalence of autism as approximately 1 in 50 to 500 and describe autism as the most prevalent of all childhood neurodevelopmental disorders.7-12 Children with autism may have impaired social interaction and communication and may have difficulty facing alterations in their daily routine.6,13 Extreme anxiety experienced by children and youth with autism spectrum disorder (ASD) when faced with new or unfamiliar
situations such as those experienced in hospital settings often manifests as difficult behavior causing challenges for the child, family, and health care team. Children with autism have been shown to have an increased relative risk for injury and increased relative risk for emergency room visits for injury.14 Children with autism also have an increased risk of epilepsy15 and abdominal complaints16 that may result in an emergency room visit. The emergency department (ED) is a loud, busy place where patients face multiple types of sensory stimulation. There is some limited research looking at how to best serve families and patients with autism in the ED,17 however, challenges of identifying and managing patients with special needs in the ED are ongoing and patient dependent. The purpose of this study was to gain an understanding of the demographic characteristics, presenting complaints and outcome of pediatric patients with ASD visiting a tertiary care pediatric ED.
1
The Hospital for Sick Children, Toronto, Ontario, Canada The Dalla Lana School of Public Health, Toronto, Ontario, Canada 3 The University of Toronto, Toronto, Ontario, Canada 2
Corresponding Author: Justine Heather Cohen-Silver, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, M5G 1X8, Canada. Email: [email protected]
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Cohen-Silver et al
Method
Table 1. Gender, Age, and Number of Health Issues.
After obtaining institutional research ethics approval, a retrospective chart review of all patients under 18 years of age, with an International Classification of Diseases (ICD-9 or ICD-10) code flagged on their chart for diagnosis of autism, Asperger’s syndrome or ASD who presented to the ED between January 1, 2011 and December 31, 2011. Demographic information, presentation, management, and outcome information were extracted from the electronic medical records by a single investigator (JCS). Statistics were then derived from the data set. Standard quantitative analyses were conducted, using Microsoft Excel formulas.
Count
Percentage
126 34 12 127 2
79 21 79
Male Female Average age Multiple diagnoses by visit Median number diagnoses
Percent of Visits by Age Group (%) 22
Age Group
36
Results
6-9
There were 160 emergency room visits documented by 130 patients with a diagnosis of ASD during the study period. Fifty percent of repeat visits to the ED were noted to follow a recent prior visit, range of 1 to 15 days after first visit to ED. Of the 160 hospital visits, 33 patients were admitted to the hospital (20%). There were 72 visits, (44%) to the ED that occured outside of regular office hours of 8 am to 4 pm, 51 of these visits (71%) had an emergency assessment triage acuity score of 2 or 1 indicating a high-acuity health issue.18 There were 126 (79%) males and females 34 (21%) female visitors with a mean age of 12 (Table 1). Of the 160 visits, 127 patients (79%) had more than 1 chronic health diagnosis. The median number of medical diagnoses per patient was 2. None of the patients with ASD were younger than 6 years. The majority of visits were in the 10- to 13year-old age-group (43%, Figure 1). Summarizing the reasons for visit, 10% were for behavior-related issues including situational crisis and homicidal behavior, and 13% were for neurological complaints including seizures. Only 3% were for dentalrelated issues (Table 2). The Canadian Triage Acuity Score (CTAS) ranges from CTAS 1 relating to high-acuity medically unwell patient up to CTAS 5 nonurgent medically stable patient with specific medical concern.18 The majority of hospital visits were considered CTAS 2 and 3 (Figure 2 and Table 3). Forty percent were CTAS 2 acuity and 42% of visits were CTAS 3. Only 12 patients within the 160 visits (7%) rated their pain as “severe” or gave it a numerical value of 8 to 10 out of 10. Overall, in 2011, 10% of all visitors to the ED required hospital admission. This is in contrast to our
10-13
43
14-17
Figure 1. Percentage of visits by age-group.
80
CTAS Triage Acuity Score
70 60 50 40
64
30
67
20 25
10 0
2 1
2 2
3
4
5
CTAS Score
Figure 2. Number of patients by available Canadian Triage Acuity Score (CTAS).
sample in which double the amount of visitors, 32 (19.7%) were admitted to the hospital. The average overall length of stay in the ED was 381 minutes (6 hours 21 minutes), median length of stay of 322 minutes (5 hours 22 minutes). Patients waited 1 hour on average to be placed in a room and almost 2 hours on average to start assessment with a physician (Table 4), this is comparable to average wait times and time to see physician at our institution in 2011.
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Table 2. Triage Presenting Complaint. Count
Percentage
17 20 5 10 12 25 73
10 13 3 20 15 15 45
Behavior/situational crisis/homicidal behavior/behavior change/concern for patient’s welfare Seizure/altered level of consciousness/paresthesia Dental Infection Injury Vomiting /nausea/diarrhea/constipation/abdominal pain Other (fever, headache, cough/congestion, skin infection, etc)
Table 3. Canadian Triage Acuity Score by Age-Group. Canadian Triage Acuity Score Age (Years)
1
2
3
4
5
Total (%)
6-9 10-13 14-17
1 1 0
11 26 27
14 28 25
9 11 5
0 2 0
35 (22) 68 (43) 57 (36)
Table 4. Wait Times in Emergency Department.
Average Median N
Length of Stay in Emergency Department (Minutes)
Time From Registration to Placement in Room (Minutes)
Time From Registration to Seeing Medical Doctor (Minutes)
381 322 143
57 29 153
116 78 151
Discussion In 2011, there were 62 092 patients who frequented the institution’s ED overall, thus reportedly 2% of visits were patients with ASD. This number is subjectively smaller than the number of autistic patients seen in the ED per week, this speaks to a lack of collecting information that would highlight that a patient has ASD and flag this diagnosis in our chart review. There were 160 total visits to the ED of patients with ASD but 32 patients visited the ED on multiple occasions, overall 130 patients with ASD came to the ED in 2011. There were 72 visits outside the hours of 8am and 4pm (44%). This information is useful in identifying the number of patients (almost half) who visited the ED outside of primary care office hours. Of these visitors, 71% have a presenting complaint that is considered a high CTAS score of 1or 2. This speaks to the fact that the emergency room is being accessed appropriately after hours for high-acuity health issues. It is informative that 25% of patients with ASD visited the ED repeatedly over 2011. Of the 32 repeat visits, 16 (50%) were noted to follow a recent prior visit, range
of 1 to 15 days. Based on health utilities analyses completed in the United Kingdom, children with autism have a significantly higher use of health services than children without these diagnoses. One might consider if this factor can be extrapolated to explain frequent repeat access of our ED by families whose children have ASD.19 The majority (80%) of visitors with ASD to the ED were male. This is not surprising considering that the proportion of males diagnosed with autism is 5:1,20 yet one can also consider if in fact female patients with autism did not access the ED as frequently. Understanding the difference between these patients and families may help identify why patients with ASD visit the ED and how to best serve their needs. Our study shows that none of the patients flagged as having ASD were younger than 6 years. Is this because parents aren’t self-reporting autism before age 6? This is particularly surprising as ASD is generally diagnosed by age 3 years and early and intensive intervention services are generally in place from this age, therefore parents are aware of their child’s diagnosis. We need to become better at capturing this important information as we can
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Cohen-Silver et al look at making modifications for patients with ASD and providing extra support for their family while in the ED. This support may include being placed in a room when possible more quickly and having access to sensory materials, which may be calming for a child with ASD. The majority of visitors (79%) with autism presenting to the ED have multiple medical issues (median of 2 comorbid health conditions per visit), this may affect the decision for families to visit the ED versus a primary health care provider. Evidence supports this finding as autism is one of the 6 most prevalent chronic health conditions in children with developmental disabilities among other comorbities.21 One compelling study describes that children with developmental disabilities (including autism, ADHD [attention-deficit/hyperactivity disorder], other psychiatric and developmental disorders) were 2 to 8 times more likely to have more than 9 health care visits, 7.5% had a medical procedure, 26.6% see a mental health professional, and 10.8% had visited an emergency room.22 Almost half of the ED visits were for high-acuity presenting complaints (44%). Seeing as the majority of patients had more then one chronic health condition, it is possible that families view the hospital ED as the best place to assess their medically complex child, perhaps this can explain why 59% of patients were CTAS 3 to 5 indicating that the majority of presenting patients did not have a high-acuity issue when coming to the ED. The distribution of CTAS score by age-group is similar. Of note, the CTAS score is determined by various variables that accurately predict severity of patients’ health issues to determine how quickly patients require assessment by the health care team. Pain is taken into consideration when assigning CTAS score.18,23 Among the criteria for autism within the DSM-IV and now DSM5, sensory abnormalities are a well-accepted symptom in autistic patients. Studies have demonstrated that patients with autism have a decreased or altered pain response. One study demonstrates that 40% of children with autism between 20 and 54 months of age did not perceive pain accurately.24 This speaks to the paucity of patients in our data set who reported severe pain (7%). Perhaps we need to consider an alternative method in assessing pain in patients with ASD and consider when triaging these patients that pain scores may not be accurate. Ten percent of patients with ASD presented with behavioral issues including crisis and homicidal behavior. We need to consider what issues of this nature are bringing patients with ASD to the ED and how the ED can facilitate helping these patients. This issue is especially relevant considering the limitations our hospital has with minimal psychiatric bed space and crisis resources we can offer, we need to consider how to help intervene for these families before behavior is reaching a
crisis point. Fifteen percent of ED visits for patients with ASD were for neurological concerns including seizures. The prevalence of epilepsy in children with autism in one study was quoted as 30%.15 Seizures are acute events that require urgent medical attention. Fifteen percent of visits were for gastrointestinal-related issues (nausea, vomiting, diarrhea, abdominal pain, constipation). Children with autism have a known increased prevalence of gastrointestinal-related concerns; one study determined that the prevalence of gastrointestinal-related issues in a cohort of children with autism was 25%.16 The data in our study complements this finding and shows that for families, gastrointestinal presenting complaint can represent an emergency. Overall there are a majority of ED visits (45%) for complaints including cough/congestion, earache, fever, and injury. Studies demonstrate that children with autism have many challenges managing their oral care resulting in dental issue.25 It was surprising to see that only 3% of patients with ASD presented to the ED with dental emergencies. The low number of patients with ASD presenting with dental complaint may be well explained by the fact that patients with special needs can easily gain access once they are patients of our hospital’s dental clinic to an urgent dental clinic visit without going through the ED for referral. In 2011, almost 20% of patients with autism in our study were admitted to the hospital. This is a very interesting finding as in the overall population in 2011 visiting the ED about 10% of patients were admitted to the hospital. This finding may also relate to the overall health of patients with autism presenting to the ED and the nature of their presenting complaint. Patients are spending on average 6 hours in the ED, about an hour to be placed in a room, and almost 2 hours to be assessed for the first time by a physician, this is comparable to wait times for all patients in the ED in 2011. Patients with autism have trouble coping outside of their routine and have trouble coping with excessive sensory stimulation.3 It goes without saying that autistic patients who are faced with prolonged wait times in a loud, bright, and noisy emergency room albeit when they have an acute medical issue are at increased risk for behavior escalation and not coping for the duration of their ED visit.
Study Limitations Limitations of this study include the fact that it is a retrospective chart review where unless the chart was flagged as containing the ICD diagnosis of autism, the chart was not included in our study. Therefore, for patients to be included in the study, they needed to be
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Clinical Pediatrics 53(12)
asked, identified, and coded as patients with a diagnosis of autism. Considering the number of charts included in this study (160) versus the number of patients visiting the ED (>62 000) and the known prevalence of ASD as high as 1 in 50,7 there is a disparity in our data, and we are therefore not recognizing all patients with autism who frequent the ED. Our study is completed on patients at a tertiary care pediatric emergency room in an urban center. These results may therefore not be generalizable to a population of all autistic children.
Conclusions This study presents the demographics for patients with ASD visiting a tertiary care hospital ED in 2011. Patients with autism visit the ED, we are not always accurately recognizing their diagnosis, these patients frequently have multiple health issues, and many return to the ED for access to care. We need to use these findings to adapt our ED to help optimally serve these patients and their families. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
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