Patient reported outcome and experience measures of oral disease in oral medicine

A recent meeting of health ministers from over 40 countries worldwide deemed that time and money should be spent on outcome and experience measures that would allow us to determine whether our health systems deliver outcomes that truly matter to patients. This meeting, along with recent national programmes to promote the use of outcome measures in evaluating medical and surgical interventions, highlighted the important role that patient reported outcome measures (PROMs) and patient reported experience measures (PREMs) have in healthcare. Oral medicine as a speciality has promoted the use of PROMs to some extent in the recent past with the use of generic and oral health specific measures in the literature and the delivery of plenary lectures at international scientific meetings. We could find no publications regarding the use of PREMs in oral medicine. This article highlights the commonly used PROM tools in the oral mucosal disease and salivary gland literature and makes recommendations for the evaluation of the development properties of currently used instruments and the establishment of core outcome sets in the commonly managed conditions in an oral medicine setting. It is also hoped that by looking at the types of PREM tools available we can determine a suitable instrument for the evaluation of patient experience in oral medicine practice

Treatment outcomes in trigeminal neuralgia–a systematic review of domains, dimensions and measures

Background Trigeminal neuralgia (TN) is a painful disorder characterized by sudden electric shock–like pain. It is a rare condition for which multiple treatments are available, including medical and surgical. The best treatment option is yet to be defined, and this is related to the lack of definition in the treatment outcomes and outcome measures. The aim of this systematic review was to summarize all the outcomes and outcomes measures that have been published to date and highlight variability in their use. Methods We have conducted a literature search using a wide range of databases (1946–2019 for medical and 2008–2019 for surgical treatment), for all intervention studies in TN. Four hundred and sixty-seven studies were selected for data extraction on TN classification, data collection method, intervention, and treatment outcomes mapped to the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT guidelines). Results Most studies collected data on pain (n = 459) and side effects (n = 386) domains; however, very few collected data on the impact of treatment on physical (n = 46) and emotional functioning (n = 17) and on patient satisfaction (n = 35). There was high variability on outcome measures used for pain relief (n = 10), pain intensity (n = 9), and frequency of pain episodes (n = 3). Conclusions A clear definition of what are the important outcomes for patients with TN is essential. The choice of standardized outcome measures allowing for consistent reporting in TN treatment will allow for comparison of studies and facilitate treatment choice for patients and clinicians thus, improving health outcomes and reducing health care cost

Audiovisual information of oral epithelial dysplasia: Quality, understandability and actionability

OBJECTIVES: Online information on oral epithelial dysplasia (OED) is insufficient and of low quality. While only written information has been previously assessed, this study aims to evaluate the content and quality of audiovisual (AV) online information about OED. METHODS: One hundred and twenty-seven materials were initially considered using six key words across two search engines (YouTube and Google). Ultimately, 29 materials remained for the final assessment. These materials were then analysed for content, quality (DISCERN instrument, JAMA benchmarks), understandability and actionability. RESULTS: Most contents were scientific (n = 25), while three videos were educational, and one video was a personal experience with OED. On a scale of 1–5, the overall DISCERN score was (mean ± SD = 2.26 ± 0.79), suggesting poor quality of information. Regarding JAMA benchmarks, there was no single material that fulfilled or lacked all four benchmarks. The overall mean understandability score was 82% and the actionability mean score was significantly low at 29%. CONCLUSIONS: Although the vast majority of AV materials on OED were primarily produced for scientific purposes, these materials could be helpful as resources for patient education. Keeping in mind, however, that the desired quality and essential patient information about OED available online remains largely poor and missing

Web-based information on oral dysplasia and precancer of the mouth - Quality and readability

OBJECTIVES: The numbers of individuals with oral cancer are increasing. This cancer is preceded by oral epithelial dysplasia (OED). There remains no detailed study of the online information presently available for patients with OED or indeed what information such patients may require to be appropriately informed regarding their condition. Hence, the aim of the present study is to assess the patient-oriented web content with respect to OED. METHODS: The first 100 websites yielded from nine searches performed using different search terms and engines were considered. These were assessed for content, quality (DISCERN instrument, Journal of the American Medical Association benchmarks, and Health on Net seal) and readability (Flesch Reading Ease Score and Flesch-Kincaid Grade Level). RESULTS: There was a general scarcity of OED content across the identified websites. Information about authors, sources used to compile the publication, treatment, and shared decision were limited or absent. Only 6% and 27% of the websites achieved all the four JAMA benchmarks and HON seal, respectively. The average readability level was at 10th grade (US schools), which far exceeds the recommended levels of written health information. CONCLUSION: At present patients seeking information on OED are likely to have difficulty in finding reliable information from the Web about this disorder and its possible impact upon their life. Further work is thus required to develop a web-based resource regarding OED that addresses the shortfalls demonstrated by the current study

Psychosocial impacts of oral epithelial dysplasia

BACKGROUND: The psychosocial impact of receiving the diagnosis of oral epithelial dysplasia, which presents up to 3.5% increased annual risk of mouth cancer, remain unknown. Using validated instruments, the present study aimed to investigate the prevalence and existing correlations between anxiety, depression and dental anxiety symptoms and burden on oral health-related quality of life. METHODS: A clinical cohort of 82 patients with oral dysplasia was asked to complete the Hospital Anxiety and Depression Scale, the Modified Dental Anxiety Scale and the shortened version of the Oral Health Impact Profile. Spearman's correlation coefficient and regression analyses were performed. RESULTS: The participants' scores were in keeping with the presence of anxiety, depression and emotional distress symptoms in 30%, 16%, and 26%, respectively. However, 69% experienced anxiety related to procedures that may be required as part of long-term management of oral dysplasia (e.g. local anaesthetic injection). The oral-health related quality of life scores showed 41.5% reporting a recent daily problem due to their oral or dental health. Significant correlations [p > 0.05] were found among and between all of the used instruments. Being a female with oral dysplasia also predicted increased odds of indicating higher anxiety and dental anxiety scores than males [p > 0.05]. CONCLUSION: Oral dysplasia can adversely impact on the psychosocial well-being of affected persons. Establishing a causal relationship between the measured variables may, however, be challenging and would need further longitudinal studies

Validity and internal consistency of four scales in patients with TMD: PHQ8, GAD7, PHQ15 and JFLS20

OBJECTIVES: The aim of this cross-sectional study was to explore the structural validity and internal consistency reliability of General Anxiety Disorder-7, Patient Health Questionnaire-8, 15 and Jaw Functional Limitation Scale-20 in patients with chronic pain of temporomandibular disorders. MATERIALS AND METHODS: Validity and reliability were assessed in 129 patients diagnosed according to the diagnostic criteria for temporomandibular disorders. Structural validity was explored using factor analysis, and internal consistency by calculating Cronbach α. RESULTS: Confirmatory factor analysis revealed a suitable 2-factor model for Patient Health Questionnaire-8, with Cronbach α of 0.89, and 0.86. One and 2-factor models were suitable for General Anxiety Disorder-7, with overall Cronbach α of 0.93 for the 1-factor model, and 0.91 and 0.84 for both factors in a 2-factor model. A 4-factor solution was appropriate for Patient Health Questionnaire-15, with Cronbach α of 0.72, 0.57, 0.71 and 0.73 for each factor separately. Exploratory factor analysis was conducted to explore the factor structure of Jaw Functional Limitation Scale 20, and a 3-factor solution was appropriate. CONCLUSIONS: This study provides positive evidence of structural validity and internal consistency of these questionnaires in patients with pain of temporomandibular disorders. However, additional testing is required to explore further psychometric properties

Web-based information on the treatment of oral leukoplakia - quality and readability

OBJECTIVE: To categorise the content and assess the quality and readability of the online information regarding the treatment for oral leukoplakia. METHODS: An online search using the term 'leukoplakia treatment' was carried out on 8th June 2015 using the Google search engine. The content, quality and readability of the first 100 sites were explored. The quality of the web information was assessed using the following tools, the DISCERN instrument and the Journal of the American Medical Association (JAMA) benchmarks for website analysis and the HON seal. Readability was assessed via the Flesch Reading Ease Score. RESULTS: The search strategy generated 357 000 sites on the Google search engine. Due to duplicate links, non-operating links and irrelevant links, a total of 47 of the first 100 websites were included in this study. The mean overall rating achieved by included websites using the DISCERN instrument was 2.3. With regard to the JAMA benchmarks, the vast majority of examined websites (95.7%) completely fulfilled the disclosure benchmark and less than 50% of included websites met the three remaining criteria. A mean total readability score of 47.5 was recorded with almost 90% of websites having a readability level ranging from fairly difficult to very difficult. CONCLUSION: Based on this study, the online health information regarding oral leukoplakia has challenging readability with content of questionable accuracy. As patients often search for health information online, it would be prudent for clinicians to highlight the caution with which online information should be interpreted

A meta-synthesis of qualitative data exploring the experience of living with temporomandibular disorders: The patients' voice

Objective: The aim of this review was to systematically review the qualitative evidence related to the experience of patients with temporomandibular disorder (TMD) and to explore the effect it has on their lives. Materials and methods: The following databases were searched systemically: Medline, Embase, PsycINFO, Web of Science, CINAHL Complete and the Cochrane database. Thematic synthesis was used to analyse and synthesise the data from the qualitative studies which explored the experience of adult patients with TMD. The Critical Appraisal Skills Programme (CASP) tool was used to critically appraise the quality of the included studies. Results: The search strategies yielded 3588 articles across all databases. A total of 20 articles were eventually included. Six themes were derived: TMD causes uncertainty and doubt, TMD had disruptive effects on life, TMD causes distress, understanding TMD—the illness and the causes, dealing with the pain and aims and hopes. Conclusion: The findings highlight the impact TMD could have on the quality of life and confirms the psychological and social challenges these patients experience

Patient and clinician perspectives of information needs concerning oral epithelial dysplasia

OBJECTIVES: Individuals diagnosed with a chronic oral disease that increase the risk of mouth cancer, such as oral epithelial dysplasia (OED), require appropriate knowledge to make informed decisions. The present study aimed to assess whether patient information needs of a group of patients concerning dysplasia were met and to what degree clinicians agree with patients on 'important' topics. SUBJECTS AND METHODS: This represented secondary analyses of a cross-sectional study to assess the information needs of 86 patients diagnosed with dysplasia compared with those of 77 clinicians using the validated OED Information Needs Questionnaire. Descriptive, concordance and regression analyses were performed for the collected data. RESULTS: The mean and median total scores for all items in the amount of information received subscale were 2.33 and 2.44, indicating overall unmet needs concerning dysplasia. Clinicians were generally able to predict topics of greatest importance to patients, although their scores were mainly lower than those of patients (k = 0.06). There was a higher agreement between patients (k = 0.25) than clinicians (k = 0.09). CONCLUSION: Clinicians are encouraged to assess a patient's information needs to ensure tailored and patient-centred communication concerning OED during all clinical consultations

Validity and reliability of the Mouth Handicap of Systemic Sclerosis questionnaire in a UK population

BACKGROUND: The objective of this study was to explore the psychometric properties of the Mouth Handicap in Systemic Sclerosis (MHISS) specifically exploring aspects of validity and reliability of MHISS in UK SSc patients. METHODS: 150 questionnaires were distributed in this study at the Oral Medicine Department of UCLHT Eastman Dental Hospital, the Outpatient Rheumatology Clinic of the Royal Free Hospital and Scleroderma Family Day. Participants were asked to complete three questionnaires (SF-36, OHIP-14 and MHISS) along with a proforma of demographic and disease-specific questions. Both convergent validity and internal consistency reliability were examined. The convergent validity was assessed by the Spearman's correlation coefficient and internal consistency reliability was assessed by Cronbach's alpha RESULTS: Of the 150 questionnaires distributed to participants, 68 respondents included. With regard to construct validity, a low to moderate degree of convergent validity was found between MHISS total score and all SF-36 subscales. However, the total MHISS score was highly correlated to all OHIP subscales. CONCLUSION: MHISS questionnaire is a self-administered patient-reported outcome measure that assesses the mouth disability in SSc patients. However, improving the global and oral health of SSc patients is important as there is no cure for the disease thus instruments that record the impact of the condition and indicate the effect of treatment on the lives of patients are of paramount importance. Current results demonstrate good preliminary psychometric properties (validity and reliability) in a UK population with further exploration of psychometric properties with an emphasis on interpretability required