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“It hurts!” cried the little kid with arthritis

Kid on grass crawling with a puzzled lookThe question is, how badly does it hurt?

A recent study conducted to evaluate pain measures developed by the Patient Reported Outcomes Measurement Information System (PROMIS) under the National Institutes of Health help captured the young patient’s perspective of living with chronic pain. The study addressed the different categories of pain experience and language used by children when they talk about chronic pain. In an interview with the Medical Xpress, researchers identified these as:

  • Pain behaviour – The child initiates he or she becomes irritable or suffers a lack of appetite (or other behaviour) when in pain.
  • Pain interference – The child describes slower movement, such as walking, or lack of energy due to pain interference.
  • Pain quality – The child describes pain as sharp, cutting, dull or achy.

The research study was based on the results of individual and focus group interviews with 32 children and with parents of children with chronic pain, such as those affected by juvenile arthritis, sickle cell anemia, and cerebral palsy.

PROMIS is a system of highly reliable, precise measures of patient–reported health status for physical, mental, and social well–being. The tools measure what patients are able to do and how they feel by asking questions. PROMIS’ measures can be used as primary or secondary endpoints in clinical studies of the effectiveness of treatment and is meant to be used throughout a patient’s lifetime with his/her disease.

Lead author Jeffrey Jacobson, an UC associate professor of anthropology, explains: “Pain is not something that can be objectively measured, and patient-reported measures are therefore essential for research and clinical assessment. Our study focused on how children aged 8-to-18 experience and talk about their pain and on the kinds of language and vocabulary they like to use.”

Jacobson and his team found that many questions or items from pain measures used with adults to describing pain as ‘gnawing or suffocating’ made younger children uncomfortable as they associate these descriptors to a monster or someone doing something to them. Children also had a limited vocabulary to express their pain quality.

Base on children’s feedback, the study recommended 13 revisions to the PROMIS pain assessment framework, including dividing pain quality (punching, twisting, electrical) into two categories – pain sensory quality and affective pain quality. The study also recommended additions to describing pain behaviour, including:

  • I took breaks
  • I asked for someone to help me
  • I told people I couldn’t do things with them
  • I told people I couldn’t do my usual chores
  • I tried to think of something nice/fun
  • I went to sleep
  • I had to stop what I was doing
  • I got angry at people

How does your little one describe his or her chronic pain? As a parent or caregiver, how can you help your child express his or her pain?