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BACKGROUND: Despite being one of the most common chronic pain conditions, painful temporomandibular disorders (TMDs) are still not included in the Global Burden of Disease (GBD) measures of health loss. A key obstacle is the absence of a lay description that can be used to derive a disability weight reflecting the severity relative to all other diseases' consequences measured in GBD. This study aims to propose lay descriptions of painful TMDs suitable for use within the GBD framework.

METHODS: The process was guided by experts from the Institute for Health Metrics and Evaluation (IHME), USA. A structured consensus process was conducted among international experts, clinicians, and patient representatives in three steps: terminology alignment, roundtable discussions during a workshop, and outcome synthesis. After aligning terminology through introductory lectures, five groups of 8-12 participants reviewed existing lay descriptions for other pain-related disorders. In addition, they discussed lay descriptions and severity states.

RESULTS: No existing descriptions adequately captured the characteristics of painful TMDs. After consensus discussions, the proposed lay description was "Pain in the jaw, face, cheeks, or around the ears, sometimes radiating to the temples or behind the eyes. The pain may be felt as dull, sharp, tense, or stiff, making chewing, talking, or opening the mouth difficult." Duration, intensity, and frequency were identified as important dimensions linked to severity.

CONCLUSIONS: The lay description provides direction on how painful TMDs can be quantified in GBD estimates. Future studies, including those that incorporate patients' perspectives, are essential to ensure alignment with lived experiences.