Abstract
Introduction:
Rates of periodontal disease and tooth loss are increased in individuals with rheumatoid arthritis (RA). Understanding factors that contribute to the increased burden of periodontal disease in RA is critical to improving oral health and arthritis outcomes.
Objectives:
To determine the perceptions held by people with RA relating to their oral health, to identify patient-centered priorities for oral health research, and to inform optimal strategies for delivering oral health knowledge.
Methods:
Semistructured interviews were conducted with patients with RA. Recorded interview transcripts were iteratively reviewed to reveal surface and latent meaning and to code for themes. Constructs were considered saturated when no new themes were identified in subsequent interviews. We report themes with representative quotes.
Results:
Interviews were conducted with 11 individuals with RA (10 women [91%]; mean age, 68 y), all of whom were taking RA medication. Interviews averaged 19 min (range, 8 to 31 min) and were mostly conducted face-to-face. Three overall themes were identified: 1) knowledge about arthritis and oral health links; 2) oral health care in RA is complicated, both in personal hygiene practices and in professional oral care; and 3) poor oral health is a source of shame. Participants preferred to receive oral health education from their rheumatologists or dentists.
Conclusions:
People with RA have unique oral health perceptions and experience significant challenges with oral health care due to their arthritis. Adapting oral hygiene recommendations and professional oral care delivery to the needs of those with arthritis are patient priorities and are required to improve satisfaction regarding their oral health.
Knowledge Translation Statement:
Patients living with long-standing rheumatoid arthritis described poor oral health–related quality of life and multiple challenges with maintaining optimal oral health. Study findings indicate a need for educational materials addressing oral health maintenance for patients with rheumatic diseases and their providers.
Introduction
Emerging data support an association between poor oral health and chronic disease, including rheumatoid arthritis (RA), the most common autoimmune arthropathy (Fuggle et al. 2016; Potempa et al. 2017; Falcao and Bullon 2019; Rodriguez-Lozano et al. 2019). RA affects 0.24% to 0.46% of the global population (Cross et al. 2014) and 0.65% of the population in our region, Manitoba, Canada (Hitchon et al. 2019), and it is characterized by inflammation causing joint pain, joint damage, impaired function, and increased mortality attributed to articular and systemic inflammation as well as comorbidity accrual (Marrie et al. 2018; Smolen et al. 2018). Oral diseases such as severe periodontal disease (PD), a leading cause of tooth loss, affect >10% of the global population (Kassebaum et al. 2014; Canadian Dental Association 2017). The prevalence of poor oral health and significant PD in RA is even higher, though estimates vary (Fuggle et al. 2016) and patients with RA are nearly 2.5 times more likely to have tooth loss than those without RA (Falcao and Bullon 2019). PD severity is associated with greater arthritis activity (Rodriguez-Lozano et al. 2019), and recent studies have suggested that nonsurgical PD treatment may reduce inflammation and improve RA outcomes (Payne et al. 2015; Falcao and Bullon 2019; Moller et al. 2020).
Understanding the factors that contribute to the increased burden of poor oral health in RA is critical to improving oral health and arthritis outcomes. PD and RA share features of inflammation with adjacent bone loss (PD, the bone supporting teeth; RA, the joint) and have similar genetic and environmental risk profiles, including strong associations with genes implicated in immune responses and smoking. Immune responses to infection have been proposed as 1 mechanism linking these 2 chronic inflammatory conditions (Potempa et al. 2017). Secondary Sjögren syndrome, which is relatively common in RA, may complicate PD. Hence, optimal oral care is important for both conditions. Yet, patient perceptions of associations between these diseases remain poorly understood, as do the oral health care needs and related preferred education modalities. To this end, we aimed to describe the perceptions of oral health among people with RA, to identify patient-centered priorities for oral health research, and to inform optimal strategies for delivering oral health knowledge. Specifically, the research question was “How do people with RA perceive their own oral health and the most important issues surrounding oral health?
Methods
Study Design, Participant Recruitment, and Data Collection
Adult patients (≥18 y) with specialist-diagnosed RA (Aletaha et al. 2010) followed in rheumatology clinics were purposively selected on the basis of vocalized concerns about their oral health and an ability to communicate comfortably in English. Eligible patients were invited to participate in individual semistructured interviews regarding their oral health. Prior to the interviews, participants completed a questionnaire assessing arthritis and oral health, health habits such as oral hygiene practices and smoking, and demographics such as highest education level attained. Participants were told that their participation was voluntary and that they may cease participation at any time, without penalty. Interviews were conducted by an experienced investigator (J.L.P.P.) who was not involved in the participants’ medical care. A semistructured guide (Patton 2002) was developed in partnership with a patient advisor (C.B.) to ensure that areas of interest were covered (Table 1). Although neither the questionnaire nor semistructured interview guide included questions on income or insurance, if a participant mentioned one or both of these topics during an interview, the topics were probed. All interviews were audio recorded and transcribed verbatim. Interviewer notes were taken to supplement the transcripts. Sample size was considered adequate once no additional themes were identified in subsequent interviews (Dicicco-Bloom and Crabtree 2006). Participants received a small honorarium.
Interview Guide.
Arthritis and Oral Health Questions
Physical function was assessed by the modified Health Assessment Questionnaire: a composite of 8 questions assessing upper and lower extremity physical function, scored as 0 (no limitation) to 3 (unable to do). Scores <0.3 are considered normal function, whereas functional limitations are categorized as mild (>0.3 to <1.3), moderate (1.3 to 1.8), or severe (>1.8; Pincus et al. 1983; Wolfe 2001; Maska et al. 2011). Arthritis pain, fatigue, and activity were assessed by visual analog scales (VASs) and the following questions: “How much pain have you had because of your condition in the past week?” “How much of a problem has unusual fatigue or tiredness been for you over the past week?” and “Considering all the ways your arthritis affects you, place a vertical mark on the scale, for how well you are doing,” where scales ranged from 0 mm (none) to 100 mm (extreme; Hawker et al. 2011; Hewlett et al. 2011; Nikiphorou et al. 2016). Scores obtained from pain VAS reflect no pain (0 to 4 mm), mild pain (5 to 44 mm), moderate pain (45 to 74 mm), and severe pain (75 to 100 mm; Jensen et al. 2003). Fatigue VAS scores ≥20 are considered clinically relevant, with scores >50 reflecting high fatigue (Pollard et al. 2006; Slatkowsky-Christensen et al. 2007). Oral health symptoms were assessed as follows: “Think about your mouth, and [indicate] what best describes your teeth and gums over the past week,” “My gums bleed when I brush my teeth,” “I have a metallic taste in my mouth,” “My teeth feel loose, and seem to be ‘drifting’ or moving,” and “When food gets stuck in my teeth, my gums feel tender or painful.” Answers were categorized as never, rarely, sometimes, often, or always. We combined never and rarely, as well as sometimes, often, or always, due to small numbers. Descriptive statistics are reported. Categorical data are cited as number (percentage) and continuous data as median (25th and 75th percentiles).
Analysis
Interviews were audio recorded and transcribed. Transcripts were independently but concurrently analyzed via thematic analysis per a grounded theory approach (Patton 2002) by 2 analysts (J.L.L.P., K.H.). In detail, this grounded theory approach began with purposive sampling, followed by a dynamic and iterative process of data collection and analysis, initial coding, a constant comparative analysis, theoretical sampling, and memoing, from which a theory grounded in the data was generated. Each analyst read the transcripts multiple times, first to examine surface meaning and second to identify latent meaning, at which point initial codes were developed. Thereafter, the analysts discussed the codes and subsequently drafted, refined, and finalized the themes. This study was approved by the University Institutional Health Research Ethics Board (HS23067 [H2019:299]). All participants provided written informed consent.
Results
Overall, 11 participants with RA were interviewed (10 women [90.9%]). Interviews averaged 19 min (range, 8 to 31 min) and were conducted face-to-face in a private office at a tertiary rheumatology clinic in Winnipeg, Canada. Nearly all participants were retired, were grandparents or great-grandparents, and had lived with RA for many years (Table 2). Five (45.5%) participants were current smokers (Table 3). The majority indicated brushing teeth (8/10; 80%) and/or flossing (6/11; 54.5%) on average at least once a day. Few reported loose teeth or tender gums (each 3/11; 27.3%).
Participant Characteristics.
DMARD disease-modifying antirheumatic drug; IQR, interquartile range (25th and 75th percentile); mHAQ, modified Health Assessment Questionnaire; RA rheumatoid arthritis; VAS visual analog scale.
Missing for 3
Missing for 1.
DMARDs were hydroxychloroquine, methotrexate, sulfasalazine, leflunomide.
Biologics were all antitumor necrosis factor biologics.
Participant Oral Health and Habits.
Sample size: N = 11 unless indicated otherwise.
Sample size: n = 10.
Categories of never and rarely were combined due to small numbers. Categories of sometimes, often, and always were combined, as no participant answered always.
Through thematic analysis, we identified 3 overarching themes—namely, the links between oral health and RA, oral health as a complicated area, and poor oral health leading to shame.
Theme 1: Oral Health–RA Links
Although participants described links between RA medication and dry mouth and other oral health concerns, few had considered links between RA and oral health. Many spoke of how they believed that the RA medication contributed to dry mouth and other oral health concerns, such as “raw gums” and no “saliva to wash things away.” For these participants, canker sores, gum recession, and tooth loss were also concerns. Yet, aside from this perception, most participants had not considered a biological link between oral health and RA prior to being interviewed: The medications really, really are awful on your mouth, and in particular, prednisone. I have osteo and rheumatoid arthritis. And I actually never correlated arthritis and my oral health—if that—that’s kind of surprising. But, I never—I never drew the correlation between the two things.
Theme 2: Challenges for Oral Health Care
Participants spoke of the daily challenges of oral care, as well as logistical and financial challenges related to specialist care.
Theme 2a: Daily Care Requires Time and Specialized Tools
Oral health care for those living with RA was time intensive and painful. Participants commonly spoke of daily oral care routines that were time demanding, “at least 45 minutes to an hour.” Some had a variety of oral health care tools (e.g., thick-handled brushes for ease of holding, water picks, electronic toothbrushes), which they alternated depending on their current oral health and RA flare-ups. At the same time, participants had to cope with “pain [that] is sometimes . . . overwhelming,” when opening their mouths and holding the oral health care tools with their hands.
I use a water pick at least once a day. My electric toothbrush I have to do it in a certain way and for at least you know at the edges of the gums and all that sort of stuff and massage them. At least a count to ten in each area every single area morning and night. And then in the afternoon after a meal I’ll give a quick brushing with a regular toothbrush. Then every day I need to I have little tooth picks, I have a tool that you put a tooth pick in and you have to go under the gums where the build-up of the bacteria is to scrap it. I was able to get products that help me. But even still, I found that the pain sometimes, was just so overwhelming. I mean, I’m dedicated about brushing my teeth, but boy it was a struggle. It took me a long time to brush my teeth.
Theme 2b: Professional Care Is Costly and Logistically Challenging
Despite daily care, frequent cleanings and visits to specialists were common and costly. In addition to daily care, participants described the need for cleanings every 3 to 4 mo and the need for specialist dental care. Many did not have dental insurance and were paying for dental care out-of-pocket. Occasionally, these costs were prohibitive, which precluded them from accessing care. This was noted among those with a lower level of education, as well as well-educated participants who had recently experienced a change in their health benefits: I don’t have benefits. So, this year it’s more challenging. Up until the end of January, I did. And then the only challenging piece was, you know taking time off to go to the dentist.
While some participants spoke of seeing a single provider, many—who identified as White and reported a university education—had multiple providers. As one participant described, “I have a hygienist, and a dentist, and a gum dentist and a bunch of dentists with fancy names. I see them every three months.” This group also described being more assertive in their discussions with health care providers and seeking out additional information, whether from “friends with the same condition” or local patient organizations, as compared with participants who identified as historically underrepresented and/or with lower levels of education.
In addition to costs, some participants struggled with logistical access, such as efforts for coordinating visits with different providers or getting to an appointment, whereas others “struggled and couldn’t keep [their] mouth open” with sitting in a dental chair during long appointments. Others wished that they had something under their knees or could stand and stretch, but only 1 participant reported ever being asked by the provider if he or she was comfortable.
Concerns with logistical access were voiced when participants were asked where they receive information about oral health and arthritis. Access to patient support groups was described as being “too bloody hard” in the wintertime. Despite the perceived costs and logistical challenges, participants described their medical professional teams (medical doctors and dentists) as the preferred primary source of information. Only 4 participants—all whom identified as White and had a university education—described using the internet, including reputable sites such as Mayo Clinic or Harvard as well as “Dr. Google,” to “punch in oral health and then [the information] shows up.”
Theme 3: Poor Oral Health Is a Source of Shame
Some participants spoke of shame because of their teeth and general oral health. Some were seeking oral care that may be considered unusual for their age (e.g., braces in their retirement years), or they had missing teeth. As one participant described, “I feel ashamed. Something’s wrong. Everyone around me has these beautiful teeth. I don’t, and something is wrong.” For a participant who identified as historically underrepresented and had a lower level of education, this shame was in part related to the inability to finance oral care, when other costs—such as heart medicine and rent—take priority. “I’ve got no teeth, just these two here and then when they start going, when they’re ready to come out or something, hopefully I can get them out and be able to pay for it. Then I’d have to get a whole new bottom plate made and that’s kind of what I’m worried about too.”
Discussion
Oral health was perceived as an important medical concern for interviewed patients with RA and was affected in part by physical limitations of arthritis. Participants reported oral health symptoms that were often attributed to medications. Yet, they had limited knowledge regarding the associations of arthritis and oral disease and had several challenges with maintaining oral hygiene due to their arthritis. These challenges were compounded by difficulties accessing professional dental care, leading to perceived social stigma and shame regarding their oral health.
Many participants were not aware of the importance of oral health to their RA. Given the increasing body of evidence linking severe PD and oral disease to RA outcomes (Rodriguez-Lozano et al. 2019) and the prevalence of oral pathology associated with secondary Sjögren syndrome, a common cause of dry mouth in RA, rheumatologists need to better inform patients with RA of the biological links between RA and oral disease and the importance of incorporating optimal oral health practices into the RA treatment plan (Jepsen et al. 2017). Informing patients of how addressing oral health may affect their RA could enhance patient self-efficacy behaviors relating to their oral health. In turn, this may increase the acceptance and adoption of oral hygiene recommendations since simply providing information on oral care may not change practice (Cornell 2013).
It is critical for rheumatologists and oral health professionals to recognize the challenges faced by patients with RA regarding their oral care. Similar to a recent study from the United Kingdom (Serban et al. 2019), functional limitations due to active inflammation and joint damage compromise effective oral hygiene despite patients’ best intentions and significant investment or dedication to oral self-care. These functional limitations, combined with more severe, often treatment-resistant oral disease, lead to frustration and emphasize the importance of adequate access to professional oral care. Yet, people with RA access professional dental care less frequently than the general population (Pokrajac-Zirojevic et al. 2002) despite having similarly high dental needs (Eriksson et al. 2016; Eriksson et al. 2019), voiced oral health concerns, and poor oral health–related quality of life (Muhlberg et al. 2017; de Azevedo Branco et al. 2019). Competing health priorities and prior adverse dental experiences may play a role (Serban et al. 2019). Our findings show that pain and physical limitations due to arthritis affected participants’ comfort during dental care and may contribute to reluctance in seeking professional dental care. Addressing the physical limitations by modifying patient positioning in the dental chair and, when feasible, adapting oral procedures could improve the experience of patients with RA and enhance adherence with dental care. Health system changes are needed to address the identified financial barriers but could be cost-effective if dental interventions improve RA and general health. Optimal oral health is achieved by personal and professional oral care (Jepsen et al. 2017), and addressing these challenges should be a health priority.
Interview length varied widely. All participants were asked all questions in the semistructured interview guide, and every reasonable effort was taken to develop rapport with participants to establish a safe and comfortable environment for the interview and to encourage them to discuss their perceptions of oral health and arthritis. Whereas some participants had thought about the interaction between oral health and RA, others had never considered this and thus had a shorter interview. Some participants were ashamed about their poor oral health and were more recalcitrant than others. Additionally, some participants were, by nature, more talkative than others.
Our findings reflect the perceptions of individuals with long-standing RA, voiced oral health concerns, and willingness to participate in the study but may not represent those of the general population with RA. As expected for a group with RA, our study sample was predominantly women (91%). We provided considerable flexibility in interview arrangements, but conversational English was needed. The perceptions and needs of nonparticipants may be different—in particular, younger individuals, those with recent-onset RA, and those from populations at high risk for RA and PD (Blanchard et al. 2012; Hitchon et al. 2019). Cultural, geographic, and socioeconomic factors can influence access to professional dental care. While not fully explored in this study, identified challenges, including financial barriers, spanned ethnic groups and educational levels. Cigarette smoking is a known risk factor for PD as well as RA and may lead to more treatment-resistant oral disease or arthritis. Nearly half of participants smoked, thus highlighting the need for continued counseling regarding smoking cessation. Contemporary RA treatment strategies have reduced the burden of joint damage; however, patients with RA at all disease stages experience joint pain and fluctuating disease activity, which affect physical function. Detailed information on other clinical features, including diagnosed secondary Sjögren syndrome, was not available; as such, we cannot determine the impact of these important variables on participant experiences.
The interviews highlighted important knowledge gaps among patients with RA and for some professionals caring for patients with RA. Rheumatologists need to inform their patients about the importance of optimal oral health to RA and general health and, in collaboration with oral professionals, encourage optimal oral hygiene practices. Oral professionals are encouraged to consider the potential impact of RA-related pain and functional impairment to adjust how oral care is administered in the dental office and to tailor oral self-care recommendations to individual patient needs. Updated guidelines that reflect current treatment strategies and address the unique needs of those with RA are needed for patients, rheumatologists, and oral professionals (Zero et al. 2016; Jepsen et al. 2017; National Rheumatoid Arthritis Society 2020).
Finally, while our study focused on RA, findings are relevant to other conditions that affect oral/facial structures or contribute to musculoskeletal impairment. Secondary Sjögren syndrome is common feature of systemic rheumatic diseases such lupus and scleroderma (Gomes da Silva et al. 2019; Benli et al. 2021). Reduced oral aperture is seen with systemic sclerosis, and nearly half of children with juvenile idiopathic arthritis have temporal-mandibular jaw involvement that usually persists into adulthood (Resnick et al. 2017; Skeie et al. 2019). Other arthropathies and inflammatory, noninflammatory, and neuromuscular conditions affecting upper extremity function may affect oral health care (Covello et al. 2020).
People with RA have unique oral health perceptions and experience significant challenges with personal and professional oral health care due to their arthritis. Adapting oral hygiene recommendations and professional oral care delivery to the needs of those with arthritis are patient priorities and are required to improve satisfaction regarding their oral health.
Author Contributions
J.L.P. Protudjer, C.A. Hitchon, contributed to conception, design, data acquisition, analysis, and interpretation, drafted and critically revised the manuscript; C. Billedeau, contributed to conception and design, critically revised the manuscript; K. Hurst, contributed to data analysis and critically revised the manuscript; R. Schroth, C. Stavropoulou, A. Kelekis-Cholakis, contributed to conception and data interpretation, critically revised the manuscript. All authors gave final approval and agree to be accountable for all aspects of the work.
Footnotes
Declaration of Conflicting Interests
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: C.A. Hitchon has received research funding from Pfizer Canada and UCB Canada for unrelated work. All other authors declare no real or perceived conflicts of interest in relation to this manuscript.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study was funded in part by the Health Sciences Centre Foundation.
Data Sharing
Individual transcript data not available to share. Summary data from interview transcripts available from corresponding author upon reasonable request.
