Patient-reported outcome measures for individuals with temporomandibular joint disorders: a systematic review and evaluation

Keller, San; Bocell, Fraser D.; Mangrum, Rikki; McLorg, Alizée; Logan, Dilani; Chen, Allen L.; Steen, Andrew I.; Woods, Phillip Stephen; Weinberg, Jessica; Royce, Leah; Sansing-Foster, Veronica; Tarver, Michelle E.

doi:10.1016/j.oooo.2022.08.002

Cited by 12 publications

(17 citation statements)

References 53 publications

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“…Towards providing the formative research for developing a content-valid PROM for TMDs, we first conducted a systematic review of existing literature on PROMs for use in documenting treatment outcomes for TMDs (results presented elsewhere) [6]. This systematic review supported the need to conduct further qualitative research to understand TMDs from the patient's point of view and contributed to the protocols used in this research.…”

Section: Introductionmentioning

confidence: 93%

“…The facilitators introduced themselves at the onset of the focus group by name and profession and the organization where they were employed. Facilitators used a focus group discussion guide to promote an open discussion of patients' experiences with their disease, review with patients the preliminary list of symptoms and functions generated by the systematic review and patient advisor input (see Appendix A, "Focus Group Discussion Guide," see the electronic supplementary material) [6], and obtain participant guidance on prioritizing symptoms. The facilitator then prompted participants to consider the list of symptoms and effects on functioning, as well as any others participants experienced that were not on the list, and to share their top five most important ones in terms of impact on the quality of their lives.…”

Section: Data Collectionmentioning

confidence: 99%

“…We coded data using NVivo Pro12 qualitative analysis software. We created a preliminary coding dictionary based on the TMDrelevant PROs found in our systematic review [6]. However, we coded data using an open-coding method, adding new codes to the dictionary as needed to reflect the identified concepts.…”

Section: Data Coding and Analysismentioning

confidence: 99%

“…Valid and reliable PROMs provide a systematic instrument to document and monitor disease, evaluate the safety and effectiveness of TMD therapies, and guide healthcare providers in patient care and disease management. Although a recent review identified more than 120 PROMs that have been used in TMDs research [6], few have robust evidence to support the reliability and validity of their scores [6]. For example, most did not include patient input in the content generation, and it was unclear whether they addressed the impacts of TMDs from the patients' perspectives.…”

Section: Introductionmentioning

confidence: 99%

“…Many of the PROMs were not specifically designed for use with patients with TMDs. They also lacked evidence of psychometric properties, such as measurement error and responsiveness [6].…”

Section: Introductionmentioning

confidence: 99%

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

Elstad

Bocell

Owens

et al. 2023

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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.

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Section: Introductionmentioning

confidence: 93%

Section: Data Collectionmentioning

confidence: 99%

Section: Data Coding and Analysismentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…Many of the PROMs were not specifically designed for use with patients with TMDs. They also lacked evidence of psychometric properties, such as measurement error and responsiveness [6].…”

Section: Introductionmentioning

confidence: 99%

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