Patients' strategies for numeric pain assessment: a qualitative interview study of individuals with hypermobile Ehlers-Danlos Syndrome.
Colin M E Halverson, Tom A Doyle
PMID 37067184WHAT IT FOUND
Patients with hypermobile Ehlers-Danlos Syndrome often report pain numbers strategically rather than accurately.
They lower scores to avoid being labeled drug-seeking or inflate them to prove therapy is working. A single number is rarely a direct reflection of their pain intensity.
Key findings
01Participants actively deflated their pain scores to avoid being perceived as exaggerating or as having a mental health disorder.
02Some patients manipulated scores to demonstrate progress to therapists or insurers, rather than reporting their actual pain experience.
03Participants found it difficult to reduce multidimensional, variable pain to a single number because pain changed by location, time, and activity.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was small (15 participants) and predominantly White women, which may limit the transferability of these specific strategic behaviors to other demographic groups. The study focused exclusively on hypermobile Ehlers-Danlos Syndrome; while chronic pain populations share features, the specific diagnostic odyssey of hEDS may drive unique patient-clinician dynamics. Findings are based on patient self-report and interpretation of their own behaviors, which may not capture unconscious biases or all contextual factors influencing their ratings.
Declared interests
The authors declare no conflicts of interest.
The easy way to misread this
Do not assume a high pain score indicates treatment failure or a low score indicates recovery. Patients explicitly reported manipulating these numbers to manage clinician perceptions and secure healthcare access, meaning the numeric value often reflects strategic communication rather than physiological pain intensity.