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

Abstract

Background Understanding symptoms of temporomandibular joint disorders (TMDs) can help doctors and patients document, monitor, and manage the disease and help researchers evaluate interventions. Patients with TMDs experience symptoms ranging from mild to severe, primarily in the head and neck region. This study describes findings from formative patient focus groups to capture, categorize, and prioritize symptoms of TMDs towards the development of a patient-reported outcome measure (PROM). Methods We conducted ten focus groups with 40 men and women with mild, moderate, and severe TMD. Focus groups elicited descriptions of symptoms and asked participants to review a list of existing patient-reported outcomes (PROs) from the literature and patient advisor input and speak to how those PROs reflect their own experience, including rating their importance. Results We identified 52 distinct concepts across six domains: somatic, physical, social, sexual, affective, and sleep. Focus groups identified the ability to chew and eat; clicking, popping, and other jaw noises; jaw pain and headaches; jaw misalignment or dislocation; grinding, clenching, or chewing, including at night; and ear sensations as most important. Participants with severe TMDs more often reported affective concepts like depression and shame than did participants with mild or moderate TMDs. Conclusion Findings support PROM item development for TMDs, including selecting existing PROMs or developing new ones that reflect patients’ lived experiences, priorities, and preferred terminology. Such measures are needed to increase understanding of TMDs, promote accurate diagnosis and effective treatment, and help advance research on TMDs. Supplementary Information The online version contains supplementary material available at 10.1007/s40271-023-00618-x.

Perspective: Advancing the science regarding temporomandibular disorders

“…However, for that, TMD science also has to better embrace patients' outcomes to provide solid evidence of safety and effectiveness in the long term (36). Some options include developing identified data elements and technological platforms that facilitate the standardization and analysis of large data that capture clinical, laboratory, and patient-generated data in an integrated ecosystem (37,38), including the adoption of wearable and mobile technologies (39,40). In addition, there is a need for the corresponding use of appropriate analysis methods for what can become multivariate within-person time-series data (41, 42) that will achieve better understanding of the chronic pain disorder as a process occurring within the patient's life (43,44).…”