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How to assess pain experiences of children with intellectual disabilities?
Children with intellectual disabilities are the most burdened by pain due to their need for frequent medical procedures and their inability to communicate pain with the simple self-report tools. A hierarchy of pain assessment techniques has been recommended. The first step on this hierarchy is to still attempt to obtain a self-report of pain whenever possible. The second step on the hierarchy is to use a pain assessment tool that has been validated for use with children with intellectual disabilities. These pain assessment tools are also indirect measures of pain. These observational pain assessment tools are not validated to quantify pain intensity, but instead quantify the intensity of pain-related distress and pain reactivity. Despite being validated pain assessment tools, these behavioral tools are proxy measures of pain that must be interpreted based on actual or potential tissue damage and expected or previously experienced pain from similar procedures and conditions. These tools should be interpreted by a parent or caregiver familiar with the child’s verbalizations and behaviors. Proxy report and concern regarding pain is the third step of the pain assessment hierarchy. The fourth and final step is to attempt an analgesic trial.
Tools for Assessing Pain of Nonverbal Pediatric Patients With Intellectual Disabilities
Tools for Assessing Pain of Nonverbal Pediatric Patients With Intellectual Disabilities
| TOOL (ACRONYM) AND REFERENCE (YEAR) | AGE RANGE | TYPE OF PAIN | PARAMETERS |
|---|---|---|---|
| Revised Faces, Legs, Activity, Cry, and Consolability Observational Tool (rFLACC) Malviya et al. (2006); Voepel-Lewis et al. (2002, 2003, 2005) | 4–19 years with mild to severe intellectual disabilities | Acute, postop | Observations and scoring are similar to the FLACC with descriptions to parameters to characterize behaviors of children in pain who also have intellectual disabilities. Allows the addition of individual patient’s pain behaviors. |
| Individualized Numeric Rating Scale (INRS) Solodiuk and Curley (2003); Solodiuk et al. (2010) | 6–18 years with severe intellectual disabilities in acute care settings | Postop | Personalized assessment tool to assess pain in nonverbal children with intellectual disability based on the parent’s knowledge of the child. Parents describe and then rank order their child’s usual and pain indicators and behaviors. |
| Noncommunicating Children’s Pain Checklist (Acute care NCCPC) Breau (2003); Breau et al. (2000, 2001, 2002, 2004); Breau and Camfield (2011); Burkitt et al. (2011); Lotan et al. (2009) | 3–18 years with intellectual disabilities in hospital, rehab, home or residential settings | Chronic, postop | Caregivers of children with severe cognitive impairments recorded their observations of their children. The NCCPC-PV (postoperative version) has eight parameters scored 0–3 each (vocal, social, facial, activity, body/limbs, physiologic). |
