Assessing pain in nonverbal patients remains very difficult, including being able to distinguish it from “behavior” (eg, self-stimulation), says Jon Matthew Farber, MD.
The Paediatric Pain Profile (PPP) is the only pain interference tool that a recent report recommends for assessing pain interference in children and adolescents with chronic pain who are unable to self-report. Investigators based this conclusion on a review of 33 studies and abstracts that studied psychometric properties of 10 such tools. Four of the tools were designed for use with children and adolescents, 3 with adults, and 3 could be used in all populations. Only the PPP, which is designed for individuals up to aged 18 years, showed evidence (low quality) of content validity and internal consistency in a population unable to self-report. Studies of the PPP assessed the tool’s psychometric properties, such as internal consistency, test-retest reliability, construct validity, and responsiveness, as well as content validity.
Three other tools for children who are unable to self-report, whether because of communication, motor, or cognitive limitations, show promise but require further investigation. These tools include the Patient-Reported Outcome Measurement Information System Pediatric Proxy Pain Interference Scale, Bath Adolescent Pain Questionnaire for Parents, and the modified Brief Pain Inventory-Proxy.
THOUGHTS FROM DR. FARBER:
Assessing pain in nonverbal patients remains very difficult, including being able to distinguish it from “behavior” (eg, self-stimulation). Questionnaires, while potentially helpful, are still insufficient. Often one must rely on the parents’ and your own “gut feeling.” Speaking of gut, remember that constipation is a common cause of pain in this population.
Smith MG, Farrar LC, Gibson RJ, Russo RN, Harvey AR. Chronic pain interference assessment tools for children and adults who are unable to self-report: a systematic review of psychometric properties. Dev Med Child Neurol. 2003;10.1111/dmcn.15535. doi:10.1111/dmcn.15535