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

OBJECTIVE: We used consensus-based, systematic protocols to evaluate the reliability and validity of patient-reported outcome measures (PROMs) for use in documenting treatment outcomes for temporomandibular disorders (TMDs). STUDY DESIGN: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we conducted a focused search of 5 literature databases resulting in a yield of 445 articles that qualified for full-text review. Our review identified 124 PROMs, from which we selected 19 directly related to symptoms of TMD including temporomandibular joint (TMJ) function. RESULTS: We abstracted data on 9 Consensus-based Standards of the selection of health Measurements INstruments (COSMIN) measurement properties and analyzed these data according to COSMIN criteria. Only 3 PROMs provided evidence for at least half of the COSMIN properties: Eight-item Jaw Function Limitations Scale, Oral Health Impact Profile (OHIP)-TMD (OHIP-TMD), and TMJ Ankylosis Specific Quality of Life Questionnaire. Only the OHIP-TMD provided evidence for properties essential to evaluating change over time: reliability, measurement error, and responsiveness. CONCLUSION: We believe these results can alert clinical practitioners to gaps in our knowledge about the most widely used PROMs in TMD practice, and identify topics requiring further study for clinical researchers.

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

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.

Patients with temporomandibular joint disorders, or TMDs, have pain and other problems in their jaw, and face and neck areas. We talked to 40 patients with mild, moderate, and severe TMDs to learn about their symptoms. We also asked patients to review a list of TMD symptoms. They then chose the most important ones based on their experience. The data showed 52 TMD symptoms and functions across six domains. The patients chose the ability to chew and eat; clicking, popping, and other jaw noises; and jaw pain and headaches as most important. They also chose jaw misalignment or dislocation; grinding, clenching, or chewing, including at night; and ear feelings as important. Findings support creating patient-reported outcome measures, or PROMs, for TMDs. These PROMs should reflect patients' experiences and what is most important to them. Such measures can help doctors treat TMDs and help advance research on TMDs.

Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders.

Background: Conflicting reports from varying stakeholders related to prognosis and outcomes following placement of temporomandibular joint (TMJ) implants gave rise to the development of the TMJ Patient-Led RoundTable initiative. Following an assessment of the current availability of data, the RoundTable concluded that a strategically Coordinated Registry Network (CRN) is needed to collect and generate accessible data on temporomandibular disorder (TMD) and its care. The aim of this study was therefore to advance the clinical understanding, usage, and adoption of a core minimum dataset for TMD patients as the first foundational step toward building the CRN. Methods: Candidate data elements were extracted from existing data sources and included in a Delphi survey administered to 92 participants. Data elements receiving less than 75% consensus were dropped. A purposive multi-stakeholder sub-group triangulated the items across patient and clinician-based experience to remove redundancies or duplicate items and reduce the response burden for both patients and clinicians. To reliably collect the identified data elements, the identified core minimum data elements were defined in the context of technical implementation within High-performance Integrated Virtual Environment (HIVE) web-application framework. HIVE was integrated with CHIOS™, an innovative permissioned blockchain platform, to strengthen the provenance of data captured in the registry and drive metadata to record all registry transaction and create a robust consent network. Results: A total of 59 multi-stakeholder participants responded to the Delphi survey. The completion of the Delphi surveys followed by the application of the required group consensus threshold resulted in the selection of 397 data elements (254 for patient-generated data elements and 143 for clinician generated data elements). The infrastructure development and integration of HIVE and CHIOS™ was completed showing the maintenance of all data transaction information in blockchain, flexible recording of patient consent, data cataloging, and consent validation through smart contracts. Conclusion: The identified data elements and development of the technological platform establishes a data infrastructure that facilitates the standardization and harmonization of data as well as perform high performance analytics needed to fully leverage the captured patient-generated data, clinical evidence, and other healthcare ecosystem data within the TMJ/TMD-CRN.