Defining the informational needs of patients with Sjogren’s Syndrome and Development of a Sjogren’s Syndrome-specific Informational Needs Questionnaire (SS-INQ)

Patient education through provider-patient information exchange is central in the clinical care of individuals living with a chronic, non-curable disorder, such as, perhaps, Sjogren’s syndrome (SS). The literature review found a knowledge gap on what information a patient with SS might want or perceive important and a lack of a specific instrument that could be used to assess the individual’s information needs (IN). Hence, the thesis aimed to (1) assess what information patients would likely find upon searching the Internet, (2) qualitatively explore patients' perspectives and preferences regarding what information related to SS they wish to receive or consider important, using focus groups (Phase-1), (3) develop and determine the psychometric properties of the novice IN instrument for SS (SS-INQ) (Phases-2A and B). The analysis of the web revealed the low quality, poor understandability and actionability and high readability level of the content available. The focus group study (Phase-1) showed that patients are underinformed and want to receive disease-related information tailored to their needs and preferences. Emergent themes were used in devising items of the newly developed IN instrument (SS-INQ). The SS-INQ was piloted to a panel of experts and target population who confirmed its face and content validity (Phase-2A). Field test results indicated that the instrument has adequate psychometric properties (Phase-2B)

Barriers and facilitators for oral health screening among tobacco users: a mixed-methods study

Abstract Objectives Tobacco consumption adversely affects general and oral health and is considered one of the significant public health burdens globally. The present study aims to assess the barriers and facilitators for attending oral and dental health screening among tobacco users who seek cessation advice. Methodology The present mixed-methods study used group concept mapping (GCM) to identify the facilitators/barriers to attending oral health screening among young adults attending face-to-face and virtual Tobacco Cessation Clinic at King Saud University (Riyadh, Saudi Arabia) between September 2022 and April 2023. Study investigators included healthcare social workers, dental interns, and oral and maxillofacial medicinists. Information about demographics, general health, oral/dental health and tobacco use were collected using self-completed questionnaires. The barriers and facilitators were assessed following GCM by brainstorming, sorting, rating, and interpretation activities. Descriptive, multidimensional scaling and hierarchical cluster analysis were used to describe the study participants and produce concept maps of the generated statements. Results The study included 148 participants who generated 67 statements summarised into 28 statements as facilitators or barriers. Based on a 5-point importance scale, the participants indicated the importance of facilitators under health-related cluster [e.g. when I feel pain] as the highest, followed by personal [e.g. to maintain my mouth hygiene], social [e.g. the quality of treatment] and financial clusters [e.g. the reasonable cost]. Concerning barriers, financial factors [e.g. high cost] acted as the highest-rated barrier, followed by personal [e.g. lack of dental appointments] and health-related [e.g. worry that dental problems will worsen]. The social factors were the least considerable barrier [e.g. lack of time]. Clustering these facilitators/barriers on the concept map indicated their conceptual similarity by an average stress value of 0.23. Conclusion Pain was the most important facilitator to attending oral health screening by young adults seeking tobacco cessation advice. Notable barriers included the high cost of dental treatment and the lack of scheduled appointments. Thus, oral health care providers need to consider scheduling periodic and timely dental check-ups to prevent and reduce the burden of tobacco-associated and pain-causing oral diseases

Additional file 1 of Barriers and facilitators for oral health screening among tobacco users: a mixed-methods study

Supplementary Material 1