Focus Groups to Inform the Development of a Patient-Reported Outcome Measure (PROM) for Temporomandibular Joint...

Area of Science:

• Medical research
• Patient-reported outcomes
• Symptom assessment

Background:

• Temporomandibular joint disorders (TMDs) cause a range of mild to severe head and neck symptoms.
• Understanding these symptoms is crucial for effective disease management and research.
• Current symptom documentation may not fully capture patient experiences.

Purpose of the Study:

• To capture, categorize, and prioritize symptoms of TMDs through patient focus groups.
• To inform the development of a patient-reported outcome measure (PROM) for TMDs.
• To ensure PROMs accurately reflect patients' lived experiences and priorities.

Main Methods:

• Conducted ten focus groups with 40 participants experiencing mild, moderate, and severe TMDs.
• Elicited symptom descriptions and gathered feedback on existing patient-reported outcomes (PROs).
• Participants rated the importance of various symptoms and PROs.

Main Results:

• Identified 52 distinct symptom concepts across six domains: somatic, physical, social, sexual, affective, and sleep.
• Most important symptoms included chewing/eating difficulties, jaw noises, pain (jaw, head), misalignment, grinding/clenching, and ear sensations.
• Severe TMD patients reported more affective symptoms like depression and shame.

Conclusions:

• Findings support the development or selection of PROMs that align with patient experiences and terminology.
• Validated PROMs are essential for advancing TMD understanding, diagnosis, and treatment.
• Improved symptom measurement will facilitate more effective research and clinical interventions for TMDs.