Background/Significance/Rationale: Patients with hypermobile Ehlers-Danlos Syndrome (hEDS) often experience chronic pain, which interferes with many activities of daily living and may significantly reduce perceived quality of life. However, pain communication and management remain critical barriers for patients with hEDS, and how these patients assess and communicate their pain remains poorly understood.
Methods: In order to improve pain communication and management, we conducted 50 in-depth, semi-structured interviews with 35 patients living with hEDS, and in this presentation, we explore the use of numerical pain assessment in individuals with hEDS from a patient-centered perspective.
Results/Findings: Three primary themes emerged from these data, namely, (1) confusion around pain quantification, (2) inconsistency of internal calibration of pain scales across encounters, and (3) a strategic use of self-assessments for practical purposes other than the accurate representation of pain.
Conclusions/Discussion: These results demonstrate the need for caution in relying on numerical pain assessment instruments.
Translational/Human Health Impact: Attention to patients’ lived experience may help to build empathy and understanding for these patients’ complex clinical situation, and we conclude by proposing approaches for some brief pain communication strategies. These conclusions have potential value for comprehension of other chronic pain conditions as well.