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

Emily Elstad, Fraser D. Bocell (), Tamika Cowans Owens, Dilani Logan, Emily Melluso, Claire Viscione, San Keller, Allen Chen, Jessica Weinberg, Veronica Sansing-Foster, Leah Royce, Phillip Woods, Andrew I. Steen, Adriana Ineveld, Michelle Reardon, Allen Cowley, John Kusiak, Deanne Clare, Terrie Cowley and Michelle E. Tarver
Additional contact information
Emily Elstad: American Institutes for Research
Fraser D. Bocell: Center for Devices and Radiological Health
Tamika Cowans Owens: American Institutes for Research
Dilani Logan: American Institutes for Research
Emily Melluso: American Institutes for Research
Claire Viscione: American Institutes for Research
San Keller: American Institutes for Research
Allen Chen: Center for Devices and Radiological Health
Jessica Weinberg: Center for Devices and Radiological Health
Veronica Sansing-Foster: Center for Devices and Radiological Health
Leah Royce: Center for Devices and Radiological Health
Phillip Woods: Center for Devices and Radiological Health
Andrew I. Steen: Center for Devices and Radiological Health
Adriana Ineveld: The TMJ Association
Michelle Reardon: The TMJ Association
Allen Cowley: The TMJ Association
John Kusiak: The TMJ Association
Deanne Clare: The TMJ Association
Terrie Cowley: The TMJ Association
Michelle E. Tarver: Center for Devices and Radiological Health

The Patient: Patient-Centered Outcomes Research, 2023, vol. 16, issue 3, No 7, 265-276

Abstract: 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.

Date: 2023
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DOI: 10.1007/s40271-023-00618-x

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