Facilitating Communication of Pain for Children with Severe to Profound Intellectual Disabilities when Applying Custom Orthoses: A Systematic Review of Behavioral Pain Assessments.
This systematic review was specifically focused towards therapists in the outpatient setting, like myself, who treat the adult population, but are asked, occasionally, to fabricate custom orthoses for children with intellectual disabilities. I chose this topic because the pain assessment I was using was not adequate to assess pain as I was applying orthoses to children who had severe to profound intellectual disabilities and seemed unable to respond appropriately during the assessment. I questioned the reliability and the validity of the pain assessment and decided to explore the research to find useful pain scales to use with this population. Behavioral pain scales studies were reviewed and the revised version of the Face, Leg, Activity, Cry, Consolability (r-FLACC) was found to be the best option to use with this population.
The findings from my systematic review changed my practice of assessing pain while applying custom orthoses to this specific population. While I know that the process of fabricating and fitting an orthosis does not need to be a painful intervention, I needed to understand how my clients were reacting so that the orthoses would be more likely to be used than a painful splint. I found that in contrast to children with typical cognitive development, children in pain and with severe to profound intellectual disabilities; can demonstrate less activity, become quiet, or even stop moving. These behaviors would not ordinarily alert me to potential pain. This systematic review supports the use of the r-FLACC observational scale as having moderate evidence to be the most feasible pain assessment tool in the outpatient clinical setting. This scale incorporates caregiver reports and directs occupational therapists to recognize subtle changes of behavior in children with severe to profound intellectual disabilities when applying custom orthoses.
Indeed, shortly after this systematic review was completed, a notice of pain scales review was independently completed by the NYU Langone Health organization. The consensus was that the FLACC scale was to be used throughout the organization to assess children and adults with severe to profound cognitive impairment. Unfortunately, the revised version of the scale was not adopted. However, I continue to incorporate caregiver reported pain behavior, specific to the client within my practice, as per my systematic review.
Click on the first link for the systematic review. Click on the second link which is Appendix A: the table of evidence for the systematic review.