Validation of Self-Report System Allows Researchers to Keep Their PROMIS to Children with Chronic Pain
Published July 2017 | Pain
For youths with fibromyalgia, idiopathic arthritis or sickle cell disease, the associated chronic pain can be almost debilitating beyond words.
Now, researchers have not only codified their words, they’ve used the youths’ own perceptions of them to shed new light on the complexities of pain interference, depressive symptoms, pain intensity, fatigue, and pain catastrophizing.
In doing so, the team led by senior author Esi Morgan, MD, MSCE, created a first-of-its-kind, pain-behavior instrument using self-report assessments specific to youths.
The Patient-Reported Outcome Measurement Information System (PROMIS) is the product of a cooperative research program initiated by the National Institutes of Health. Scientists analyzed responses from 450 children, ages 8 to 18 years, to develop a pain behavior item bank and an eight-item short form of the most informative questions.
“This brief, precise measure makes it feasible to assess pain behaviors in research studies, or in a clinical setting, in contrast to more complex observer-based protocols that are not practical to implement,” says Morgan, Co-Medical Director in the Division of Rheumatology. Collaboration was essential. The team also involved researchers from the divisions of Behavioral Medicine and Clinical Psychology, Anesthesia, Hematology, the Anderson Center for Health Systems Excellence, and other scientists in Cincinnati, Atlanta, Philadelphia, Chicago and Bethesda, Md.
The team is now analyzing comparative data in a sample collection of both parent-proxy and self-report measures. “In addition, including the pain behavior measure in a longitudinal intervention study would allow assessment of responsiveness,” Morgan says.
Parent-proxy measures could be applied to children as young as 5. In adolescent/parent assessments, the team noted, perception discrepancies were common. Findings also could help guide clinicians’ interventions and target adaptive ways to communicate about pain.
