Be Careful with Language When Talking Chronic Pain with Children

An estimated 20% to 35% of children worldwide suffer from chronic pain, according to the American Pain Society, but treating the condition has added challenges for the younger population.

The Patient Reported Outcomes Measurement Information System (PROMIS) was developed by the National Institutes of Health to measure patient outcomes in different conditions. Researchers from the University of Cincinnati (UC) evaluated how well the system evaluates pain and suggested new strategies to craft effective conversation in pediatric patients.

“Pain is not something that can be objectively measured, and patient-reported measures are therefore essential for research and clinical assessment,” lead author Jeffrey Jacobson, PhD, said in a news release.

• The MD Magazine Chronic Pain condition center

The team conducted individual and focus-group interviews with 32 children with chronic pain, as well as 32 individual and group interviews with parents whose child had chronic pain. The kids were ages eight to 17 and had chronic pain conditions such as juvenile arthritis, sickle cell anemia, and cerebral palsy. The study focused on how language and vocabulary when talking about pain differs in younger patients.

“We found that many questions or items from pain measures used with adults, describing pain as ‘gnawing or suffocating,’ made younger children uncomfortable. They appeared to relate that to a monster or someone doing something to them,” explained Jacobson, an associate professor of anthropology at UC. The authors described three categories they found during the interviews that fit very well within those in PROMIS.

• Pain behavior: The child reports irritability, lack of appetite, or other behavior when in pain
• Pain interference: The child says pain causes slower movement and lack of energy
• Pain quality: The child uses “sharp,” “dull,” “achy,” and “cutting” to describe the pain

Children have a more limited vocabulary than adults, which highlights the particular importance of taking language into consideration when talking to pediatric patients about their pain.

Based on the results in The Journal of Pain, the authors suggested 13 revisions to PROMIS pain assessment framework. They recommend splitting pain quality into two separate categories, including pain sensory quality (punching or twisting) and affective pain quality (if the pain ever feels weird). The team also recommends adding the following descriptions for pain behavior analysis:

• 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

The researchers say that their findings should be explored further for consideration for the PROMIS network.

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