Postoperative Pain Management of Children With Autism Spectrum Disorder

Purpose:

 The primary objective of this study was to describe how children with Autism Spectrum Disorder (ASD) understand and communicate about pain. A secondary aim was to describe how children with ASD understand and communicate about pain by identifying meaningful vocabulary and common frames of reference for pain.

Pain assessment of children with Autism Spectrum Disorder (ASD) is challenging and unexamined. However, given that the core deficits of ASD may significantly interfere with the ability to utilize traditional pediatric pain assessment tools (e.g. FACES, 0-10 numeric rating scales), a better understanding of how this population relates their experience of pain to providers is essential for quality care.

Individuals with ASD often have idiosyncratic communication and social participation skills. Recognizing emotions through facial expressions and body language can be particularly difficult when a child has ASD, especially when the child is in a new and unfamiliar environment (Allely, 2013). This social communication deficit may explain why children with ASD seem to demonstrate less outward reaction to pain or pleasure. Pain assessment of many individuals with ASD is difficult and remains largely unexplored. This population is generally unable to utilize traditional pain assessment tools because of their core social and communicative deficits. Breau, McGrath, & Camfield have shown that while accommodations have been adapted to more successfully measure pain among other specific disabled patient groups, these instruments do not address the particular vulnerabilities common to individuals with ASD (Breau, Camfield, McGrath, Rosmus, & Finley, 2001; Breau, McGrath, Camfield, Rosmus, & Finley, 2000). Additional work done by Colligan and Giusiano; Ely and colleagues,  Stallard, Williams, & Velleman  have also supported this finding(Collignon & Giusiano, 2001; Ely et al., 2012; Stallard et al., 2002).  Given the rising prevalence of ASD, health care systems are challenged to safely and expertly interface with this patient community using alternative technologies and adapted instruments (Scarpinato et al., 2010).

Children as young as 4 years of age without ASD are able to communication about pain intensity, character, location and methods of relief through drawings, self-report pain tools and play (Franck, Sheikh, & Oulton, 2008). Many children with ASD attend school and are able to communicate through words, symbols, or actions, and are likely able to provide information about the intensity of pain they feel. The challenge then is to identify methods to assess pain and adapt existing pain assessment tools keeping in mind the specific differences a child with autism might experience when trying to communicate about pain.

The interdisciplinary team from one tertiary care pediatric hospital felt it was important to shed light on the barriers to pain assessment in children with ASD. The team designed a study describing novel methods to communicate with this population about the experience of pain.

Methods: We used a qualitative, descriptive design with interviews. Two study team members conducted all interviews. Both were experienced pediatric health care providers, one a nurse researcher, the other a child life specialist. Interviews were completed using semi structured questions and electronic technology, e.g. iPad, with a number of applications designed to allow subjects to “draw” their pain and identify emotions. Interviews were digitally recorded and transcripts were distributed to the study team. Individually, team members read and coded the transcripts for distinct words and phrases they identified as meaningful. The team then met as a group to review and discuss their individual coded phrases so that categories of like codes could be grouped. Each of the group analysis sessions involved 5-9 interviews. The process was iterative, as interviews were completed and distributed, the team met again to continue categorization and discussion of content from the data eventually arriving at categories and themes representing the data.

Results:

Subjects included 40 children ages 6-18 years with ASD experiencing acute pain following a surgical procedure at a large urban tertiary children’s hospital. Participants were primarily male (34/85%), non-Hispanic White (29/72.5%) with a mean age of 11.75 ± 3.36 years (range 6-17). All subjects were able to describe and locate their pain but required a variety of approaches. Assessment preferences included minimal time spent focusing on pain as well as simplistic language and actions by using terms familiar to each subject. Some subjects were able to reliably demonstrate understanding of graded response and seriation, but many could not. Parent involvement was essential, both in helping interpret the child's needs and providing trusted support.

Three themes emerged from the qualitative analysis: 1) understanding pain/hurt: child communication, 2) understanding pain/hurt: parent as interpreter, and 3) what makes pain better. Each theme included a number of categories illustrative of the identified theme.

Key findings include patient preference to point at the location of pain rather than using a pain assessment scale. Parent involvement is a key support for the child when in pain both in helping interpret the child's needs and providing trusted support. All subjects were able to describe their pain, however, a variety of approaches were necessary to elicit information. Words matter; there is a need to establish what words the child uses for pain and use them during interactions. Locating the pain (either on themselves or using iPad image of a human outline) was a technique each child used to describe his/her pain. Most children could articulate helpful interventions such as distraction. Simplicity in both words and actions was preferred. Anxiety tended to increase as the child thought about and spoke about pain management.

Conclusion:

Verbal children with ASD in this sample discussed their pain experiences and provided insights into preferred methods of pain assessment and described ways to manage their pain. While there was great variability in their responses and engagement in conversation about hurt/pain, each child provided valuable data. Medical staff, as well as caregivers, struggle to confidently interpret behaviors of children with ASD given their unexpected affective responses, including lack of traditional comfort-seeking behaviors. Importantly, behaviors function as communication, especially when language skills are limited; reliably understanding behaviors proves to be challenging.

Children with ASD exhibited an extremely wide range of behaviors, thoughts and communicative abilities when discussing their pain experience. No one pain assessment method was preferred by the subjects. Rather, a variety of interactive methods and observations was needed to gain an accurate assessment of pain including asking about pain location, characteristics, and intensity in a way that was meaningful to the child. Our work further supports the call for multi-modal pain assessment to inform priorities in the approach to improve care of children with ASD. Individuals with ASD require alternate pain assessment tools to most successfully communicate about pain. Individualized care by providing patient options and allowing them to choose the pain assessment scale they believe works best for them may provide a more accurate pain score.