BACKGROUND
Patients with autoimmune rheumatic diseases (RD) have a high prevalence of oral manifestations and/or oral side effects from immunomodulatory medications.1 These factors combined with challenges impacting oral self-care can adversely impact oral health and overall quality of life.2 Poor oral health, in particular periodontitis, may contribute to chronic disease, including rheumatic disease, highlighting the importance of maintaining optimal oral health.
OBJECTIVES
The study objectives were to explore how patients with RDs perceive their oral health, to describe how patients and their health care providers (HCP) approach oral care (self-care and professional dental care) and any challenges/solutions related to this oral care, and to determine preferences for delivering oral health knowledge to patients and HCPs.
METHODS
Patients with RD and HCPs participated in semi-structured interviews conducted virtually. Patients had a variety of RDs, including rheumatoid arthritis and systemic autoimmune inflammatory disease. HCPs included adult and pediatric rheumatologists and an oral pathology dental specialist. Interviews were analyzed for common themes. After interviewing nine patients, no additional themes emerged.
RESULTS
All patients that were interviewed reported oral health concerns, the most common being gingival bleeding or recession, dry mouth, multiple tooth fractures, caries, fillings or crowns, oral ulcers, and temporomandibular joint issues. Most (56%) reported challenges with professional oral care.
Four themes were identified.
- Oral health care perceptions: patients have multiple oral health issues, and there are challenges with professional oral health care. (Patient quotes: “My oral health, it’s not good”; “I have trouble opening my mouth wide enough for long periods of time”)
- Oral care requires creativity and commitment: multiple strategies were used to overcome physical limitations and address oral symptoms; and financial obstacles exist. (Patient quotes: “Electric toothbrushes are too skinny to hold [and are controlled by] switches using your thumb … mouth-operated switches would be easier”; “How much money are you going to spend on your mouth?”)
- Communication on oral health and RD (barriers and solutions): there is a lack of awareness of the links between oral health and chronic disease, limited evidence-based guidelines relating to oral care for patients with rheumatic disease, and varied preferred communication strategies. (Patient quote: “I didn’t get a lot of information in the beginning… much was by trial and error”; HCP quotes: from a rheumatologist, “In my training, there is very limited oral health”; from a dental specialist, “Conferences should be interprofessional and patient-centered… we need to bring this information to practice.”)
- Need for change in models of care: lack of inter-professional communication dictates a need for self-advocacy and improved models of care. Multidisciplinary team-based models are suggested. (Patient quote: “I make sure all my caregivers have got the same information so we can work together”; HCP quote: “We have to work as a group […] so if a patient develops [a condition] with an oral-systemic link we can work together.”)
CONCLUSION
Patients with RDs perceived substantial challenges with their oral health and professional dental care. Multiple dental products and creative strategies were utilized by the patients to overcome these challenges. Current educational resources were described as limited and unreliable. A multi-pronged communication strategy was suggested by the patients. An inter-professional team with holistic approach was proposed by patients and HCPs to help establish trusting relationships and more effective care.
