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- Springer Journals
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- Copyright © The Author(s) 2023
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- 10.1038/s41405-023-00136-w
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Abstract
www.nature.com/bdjopen ARTICLE OPEN Oral care considerations for people with cystic fibrosis: a cross-sectional qualitative study ✉ ✉ 1 1 1 2 1 1,3 Niamh Coffey , Fiona O’ Leary , Francis Burke , Barry Plant , Anthony Roberts and Martina Hayes © The Author(s) 2023 OBJECTIVES: To investigate the attitudes of adults with Cystic Fibrosis (CF) towards dental attendance and any perceived barriers to treatment. METHODS: A cross sectional survey in the form of a structured, anonymous questionnaire was used to obtain information regarding adults with CF’s feelings towards dentists and dental treatment. The final version of the questionnaire was based on a collaborative effort between researchers at Cork University Dental School and Hospital and Cystic Fibrosis (CF) patient advocates from CF Ireland. Participants were recruited via CF Ireland’s mailing list and social media channels. The responses underwent descriptive statistical analysis and inductive thematic analysis. RESULTS: A total of 71 people (33 Male: 38 Female) over the age of 18 living with CF in the Republic of Ireland responded to the survey. 54.9% of respondents were unhappy with their teeth. 63.4% felt that CF had an impact on oral health. 33.8% were anxious about attending their dentist. Respondents believed that CF has impacted on their oral health due to the medications and dietary requirements involved, as well as tiredness and other side effects of CF. Reasons for being anxious about attending the dentist included cross infection concerns, issues with the dentist, with tolerating treatment, and with the teeth themselves. Respondents wanted dentists to be aware of the practicalities of dental treatment for people with CF, especially their discomfort with lying back. They also want the dentist to be aware of the impact that their medication, treatment and diet has on their oral health. CONCLUSIONS: Over one third of adults with CF reported anxiety about attending the dentist. Reasons for this included fear, embarrassment, cross infection concerns and problems with treatment, especially being in the supine position. Adults with CF want dentists to be aware of the impact that CF can have upon dental treatment and oral health care. BDJ Open (2023) 9:11 ; https://doi.org/10.1038/s41405-023-00136-w INTRODUCTION considerations include the long-term use of antibiotics (which may Cystic Fibrosis (CF) is an autosomal recessive genetic condition, be inhaled or nebulised), bisphosphonates for osteoporosis, resulting from mutations in the cystic fibrosis transmembrane presence of CF related diabetes, gastro-oesophageal reflux conductance regulator (CFTR) gene on chromosome 7 [1] Its disorder, and malnutrition which may be treated with Oral dysfunction results in abnormal transport of Chloride and Nutritional Supplements with a high sugar content [6–10]. Bicarbonate ions, leading to thick viscous secretions in multiple The oral health status of individuals with CF is not yet fully organ systems. This can result in diabetes, osteoporosis, liver understood. A 2020 systematic review showed that the majority of disease, chronic kidney disease, and gastro-intestinal issues, as well studies show better oral hygiene, with lower levels of gingivitis as serious respiratory problems, with progressive bronchiectasis and plaque among PWCF than controls [11], with fewer studies and recurrent infective pulmonary exacerbations being the showing increased gingivitis and higher levels of plaque and hallmark of CF lung disease [2]. Lung transplantation is recom- calculus. It is thought that the long-term use of broad-spectrum mended for individuals with advanced lung disease [3]. Due to antibiotics may have a preventative effect against the develop- earlier diagnosis and improved therapies, the life expectancy of ment of periodontal disease [12]. people with CF (PWCF) has greatly improved, from a median A number of studies have investigated the link between CF and survival age of 11 years in 1978 to between 44 and 53 years in Developmental Defects of Enamel (DDEs) and the majority of 2019 [4]. Due to the fact that CF has changed from an almost these report an increased level of DDEs in the CF population exclusively paediatric disease to a disease of adulthood, the [13–18]. It is hypothesised that this may be due to metabolic or transition to adult care is now an important aspect of CF patient nutritional disturbances, long term antibiotic use and pancreatic management [5]. The medical care of PWCF is complex, with enzyme use [14, 18]. Interestingly, Abu-Zahra et al. also found that treatment aiming to control the symptoms, reduce complications the severity of enamel defects increased with the number of and reduce the severity of different manifestations of CF. Oral care surgeries the patient had undergone [15]. 1 2 Department of Restorative Dentistry, Cork University Dental School and Hospital, University College Cork, Cork T12 E8YV, Ireland. Adult Cystic Fibrosis Centre, Cork University Hospital, Wilton, Cork T12 DFK4, Ireland. Department of Restorative Dentistry, Dublin Dental University Hospital, Lincoln Place, Dublin, Ireland. email: niamh.coffey@ucc.ie; martina.hayes@dental.tcd.ie Received: 10 December 2022 Revised: 9 February 2023 Accepted: 13 February 2023 1234567890();,: N. Coffey et al. There has been significant research into the relationship Table 1. Respondent Profile. between CF and dental caries experience, however, no clear consensus can be formed. Despite the fact that people with CF Variable Category N % have been hypothesised to be more at risk of caries due to a high- Gender Male 33 46.5 calorie diet, sugar containing oral nutritional supplements, gastro- Female 38 53.5 oesophageal reflux disorder (GORD), increased levels of strepto- Level of education Primary Level 3 4.2 coccus mutans and DDEs [14, 19], the majority of studies found completed that there was a lower caries experience in people with CF Secondary Level 17 23.9 [12, 15–18, 20–23]. However, some studies found that caries Third Level 48 67.6 experience in people with CF increased with age [24, 25], and, Employment Full-/part- time 43 60.6 furthermore, studies that included adults, or were limited to adult employment/self- participants found a higher caries experience in study groups employed [13, 26, 27]. Unemployed 25 35.2 Studies have shown that people with special medical care Prefer not to say 3 4.2 needs may be less likely to access dental care [28] and a recent report has shown that people with Cystic Fibrosis may attend Natural teeth 20 or more 64 90.1 dental practices less frequently than is recommended [29]. 10-19 4 5.6 There has been no prior research into the attitudes of Don’t know 3 4.2 adults with CF regarding dental attendance. This study was Denture Wears denture 0 0 undertaken to investigate concerns adults with CF may have regarding dental attendance and dental treatment, and to No Denture 71 100 identify methods to improve service provision for these Are you happy Yes 30 41.3 individuals. regarding the No 39 54.9 appearance of Declined to answer 2 2.8 your teeth? AIMS Dental attendance Regular attender 42 59.1 This study seeks to investigate the attitudes of adults with CF Irregular attender 29 40.8 towards dental attendance and any perceived barriers to Reason for last Routine check-up/ 39 54.9 treatment. dental visit consultation Pain/trouble with teeth 21 29.6 gums or mouth METHODOLOGY Study design Treatment 8 11.3 A cross sectional survey was carried out in accordance with the Do you think that CF Yes 45 63.4 World Medical Association Declaration of Helsinki and received has impacted your oral No 13 18.3 Ethical Approval from the Clinical Research Ethics Committee of health? Don’t know/Declined 13 18.3 the Cork Teaching Hospitals (ECM 03/2022 PUB). to answer The inclusion criteria were people over the age of 18 years with a diagnosis of CF. The exclusion criteria were people without Anxious/worried about Yes 24 33.8 Cystic Fibrosis, or people with Cystic Fibrosis under the age of 18. attending dentist? No 45 63.4 All respondents gave written consent to take part, declaring that Don’t Know 2 2.8 they understood they were under no obligation to complete the Do you make your Yes 25 35.2 questionnaire and that they consented to data collection. dental practice aware of Participants were recruited via Cystic Fibrosis Ireland’s mailing list No 19 26.8 your CF status? and social media channels. Dental practice 27 38 already aware Questionnaire A structured, anonymous online questionnaire, with open-ended questions, was used to obtain information regarding their RESULTS feelings towards dentists and dental appointments. Patient A total of 71 adults with CF responded to the survey. involvement was sought from patient advocates from CF Ireland, The quantitative responses and descriptive statistical analysis with whom the questionnaire was trialed, and amendments are summarised in Table 1. made based on their feedback. The final version of the The majority of respondents had a high level of education questionnaire was based on a collaborative effort between (67.6% having 3rd level education) and were employed or self- researchers at Cork University Dental School and Hospital and CF employed (60.6%). They retained the majority of their teeth and patient advocates from CF Ireland. Data was collected from May no respondent had a denture. Despite this, the majority of to August 2020. A copy of the questionnaire is included in patients (54.9%) were unhappy with the appearance of their teeth. Appendix I. 40.8% of people were irregular attenders and nearly 30% said the reason for their last dental visit was “pain or trouble with teeth, Data analysis gums or mouth”. The majority (63.4%) of patients felt that CF had Descriptive statistical analysis of the quantitative questions an impact on their oral health. 33.8% were anxious about was completed using IBM SPSS (v26; SPSS Inc., Chicago, IL, attending the dentist. 25.2% of respondents made the dental USA). The qualitative portion underwent thematic analysis as practice aware of their CF status before attending, with a further described by Braun and Clarke [30] (2006). The analysis was 38% reporting that the dental practice was already aware. inductive in that there is no previous study in this area and, When asked if they think dentists should be part of the therefore, the data collected determined the themes generated. multidisciplinary team, 54.9% said “Yes”, 32.4% said “Maybe” and Selected quotations and related themes can be seen in only 12.7% said “No”. Appendices II-IV. BDJ Open (2023) 9:11 N. Coffey et al. Qualitative data supine position that is usually employed during a dental The following questions underwent thematic analysis: examination- “I find it difficult to be in a flat position as it affects my breathing. It’s also very difficult not to cough”. Some 1. Do you believe that CF has impacted on your oral health in respondents reported dental problems causing anxiety surround- any way? ing dental appointments: “My teeth are all wearing away at the 2. Are you anxious/worried about going to the dentist? If yes, bottom the past few years and I feel my teeth are going to break why? soon”, “I just feel embarrassed about my teeth”. 3. What do you think is important for the dentist to know about CF itself had an impact on people’s anxiety regarding dental CF? attendance, with one individual noting that they “Feel sick enough without there being another thing wrong with my teeth”. Question 1: Question 3: Do you believe that CF has impacted on your oral health in any way? What do you think is important for the dentist to know about CF? The majority of respondents (63.4%) believed that CF did have Four major themes emerged from this question. In descending an impact on their oral health. The major themes that emerged order of frequency, they were: from this question, in decreasing frequency was: 1. Practicalities of dental treatment 1. Impact of medications (especially antibiotics) 2. Impact of medication/treatment/diet 2. Tiredness 3. Impact of CF itself 3. Diet 4. Cleanliness of surgery/cross-infection control. 4. Side effects of CF The main concerns adults with CF had were the practicalities of The main CF-related factor that respondents mentioned was the dental treatment, namely keeping the patient upright and impact of medications- concerns ranged from nausea/vomiting to allowing them to have breaks during treatment. The vast majority discolouration, to dry mouth. Many blamed antibiotics in particular of respondents said some variant of this, e.g., “it is often difficult for as the cause for “staining”, “lost enamel” and “weakened teeth”. people with CF to lie down and not cough for long periods of time”, Tiredness/lack of energy also had an impact on their oral health. “would have liked option to sit more upright during prolonged Many mentioned being “too tired to brush”, “no energy to brush”, treatment, felt this was where I was exposed to risk of aspiration”, “I with one respondent noting “When I’ve been very sick it’s hard to can’t lie flat or sometimes breathe through my nose quick enough”. get the energy to brush your teeth, I remember having to ask my On a positive note, some respondents noted that their dentist/ mum to brush them for me”. hygienist already accommodates this: “My dentist is very good and Another area where CF impacted oral health was diet. Many tilts chair upright and also pauses when I indicate I need to cough. It respondents noted an increase in amount of sugar needed: “to get slows process but he is very understanding and allows time”, “Extra calories in”, “just over eating sweet things when sick and no real breaks may be needed, my dentist/hygienist are good when it come appetite for large meals”, and being “addicted to sugar”. One to that!”. respondent noted that they had an increased need for sugary Another issue that adults with CF wanted dentists to be aware food since developing CF related diabetes (CFRD) “Since develop- of is the impact that medication, treatment and diet can have on ing CFRD, I eat a lot more jellies and drink orange juice now to treat their oral health. A concern is that dentists are not aware or not lows [hypoglycaemic episodes]. understanding of the effects that CF-related medication and diet Other systemic effects of CF also had an impact on their dental has on their oral health. They want dentists to be aware of “the full health, such as “tummy issues causing bad breath and erosion” and extent of the treatment required that may impact the teeth, gums missing dental appointments due to being unwell. and tongue”, “the effect different meds have on oral hygiene”, “before lecture on oral hygiene, sweets etc.- CF patients need [them] Question 2: to maintain weight”. Another overlapping theme that emerged Why are you anxious/worried about going to the dentist? was for the dentists to be aware of CF itself and the impact that Five major themes emerged from this question, in descending has on the individual: “the impact it [CF] has on our health and order of frequency, these were: mental health and how that could relate to our dental hygiene/care/ condition”, “About CF in general and how CF has impacted our oral 1. Issues with the dentist health”. 2. Cross-infection concerns The final theme that emerged and can be linked to dental 3. Problems with treatment anxiety as outlined in the previous section, is for dentists to be 4. Problems with teeth aware that adults with CF may be anxious about cross-infection 5. CF related problems. risks. Respondents mentioned aspects such as “cross-infection risks, especially infection risk from pseudomonas”, “clean lines”, “make sure Dentist-related problems included fear of dentists themselves, all equipment is sterile for treatment”. fear of being judged by the dentist, with some respondents noting “I have previously been treated with lack of understanding from dentists/hygienists” and ““I am always in trouble when I attend”. Another aspect of dental visits that concerned adults with CF DISCUSSION was cross-infection control, with many respondents mentioned Adults with CF can feel anxious regarding dental care which may increased anxiety since the Covid-19 pandemic “I did not feel this result in irregular attendance and higher risk of dental disease. The way before but I do now in light of Covid-19”. Some respondents most common concerns described by respondents of this study also mentioned concern at being so “close to the sink at dentist include dental anxiety, cross-infection concerns, and difficulty with chair”. This is due to the perception that there may be stagnant the practicalities of treatment, for example, laying back in the water or saliva in the sink [spittoon] which could pose a cross- dental chair. infection risk to the individual. 33.8% of respondents said they were anxious regarding A practical issue that caused anxiety in adults with CF was attending the dentist. This is a much higher proportion than the dental treatment, with many expressing difficulty in lying in the estimated 4% to 20% of people in the general population in BDJ Open (2023) 9:11 N. Coffey et al. developed countries who suffer from dental anxiety [31, 32]. It is Strengths and limitations also a higher proportion than a 1998 sample of people with A limitation is the relatively small sample size. It should be noted special health care needs where 27.9% reported “fear/anxiety there are 746 adults with CF in Ireland as of 2019 [39]; therefore, a about dental visits” Ideally, levels of dental anxiety amongst the response from approximately 9.5% of that population was population would be decreasing year on year due to new obtained. As with any survey, there is a risk of sample selection therapies etc, therefore, this is a major concern. It is well bias, in that people who are anxious about attending the dentist established that dental anxiety is one of the most important may be more likely to self-select for the survey. Another limitation barriers to dental care [33, 34]. Therefore, this study is important is the high level of education (67.6% completing third level) and of because it enables us to gain better understanding of what is employment (60.6%) reported by the respondents. This is higher causing the high levels of anxiety in adults with CF. than the level of education (49% completing third level) and of Examining the major themes regarding this anxiety, it can be employment (54%) seen in other Irish PWCF, as outlined in CF seen there are dental-related concerns (the dentist themselves Ireland’s Independent Living report 2017 [40], and so may not be and treatment concerns) and patient-related concerns (pro- fully representative of the CF population as a whole. In future blems with teeth and CF as a condition). Clinicians should seek studies, it may be beneficial to collect data regarding the age of to rectify the concerns over which they have control, i.e. being respondents and investigate if there is any age-related difference judgmental regarding patient’s teeth or need to stop for breaks. in dental concerns. These authors recommend allocating extra time to patients with A major strength of this study is that it is the first study into the CF to enable clinicians to have an in-depth discussion regarding attitudes of adults with CF regarding dental treatment and should the patients’ previous medical and dental history, and concerns serve to guide dentists and other dental care providers in their they may have regarding their teeth or regarding dental management and treatment of this vulnerable cohort. This is the treatment. Good communication skills, and the feeling that first opportunity adults with CF were given in order to voice their patients are being listened to can result in a marked improve- concerns or anxieties regarding dental treatment and it would be ment in patient satisfaction and healthcare outcomes [35], beneficial to compare it to other (non-Irish) CF populations to see therefore spending extra time to fully understand the CF if they have similar concerns. patient’s medical background shouldhelptoimprove their Another strength is that the questionnaire was anonymous, perception of dentists and dental treatment, and to alleviate therefore respondents were more likely to be honest with how their anxiety. they perceived the dentist and dental appointments. The fact that This study shows that adults with CF can themselves be we employed the use of PPI (Patient and Public involvement) was concerned regarding the appearance of their teeth, and many a major benefit as a 2014 systematic review shows PPI has a a believe the medication and diet related to CF has had a negative positive impact on all research/stages [41]. effect on their oral health. They have raised concerns about dentists’ lack of understanding on the condition and its manage- ment, and therefore, may be anxious about attending a dentist CONCLUSIONS due to fear of being adversely judged. Adults with CF want A third of adults with CF reported anxiety about attending the dentists to understand that due to increased dietary needs, dentist. Reasons for this included fear, embarrassment, cross- periods of ill-health and polypharmacy, they may have increased infection concerns and problems with treatment, especially being risk of oral disease. Therefore, dentists practising in areas with a in the supine position. Dentists and dental care professionals relatively high proportion of PWCF, such as Ireland and the U.K., should be aware of the impact that CF can have upon dental should educate themselves regarding the comorbidities and treatment and oral health care. treatment modalities involved in this condition. More recommen- dations are given below. One of the major points repeated was the need to sit the RECOMMENDATIONS patient in an upright position due to a frequent need to cough, Medical complexities faced by people with CF such as frequent this is due to mucus build up or reflux, and is reported by almost and long-term antibiotic use, specific dietary requirements and every person with CF [36, 37]. Therefore, sitting the patient in an periods of illness may lead to difficulty in maintaining meticulous upright position during treatment should be accommodated if oral hygiene. Dentists should be understanding of this and not possible. chastise patients regarding their dental condition but instead give Dentists should also alleviate the patient’s concern regarding recommendations regarding how to improve this. cross-infection control, by reassuring adults with CF that the A thorough medical and social history should be carried out in strictest standards of cross-infection control are being adhered to. order to improve patient care. Be aware that people with CF may A large number of respondents mentioned Covid-19 specifi- not think to disclose the consumption of Oral Nutritional cally as an area of concern, this is in-keeping with recent studies Supplements (ONS) in their medical history, and so should be which showed that even in people without CF, “those with high asked about this separately. Preventative advice such as fluoride Covid-19 fear were at least six times more likely to not visit the varnish application, fissure sealants or a fluoride mouth rinse may dentist” [38]. Similar to the previous comments about cross- be advised if a patient is deemed at high risk of caries infection control, it may be beneficial to allay PWCF’sfears development, due to sugar-containing medicines, ONS, high regarding this by, for example, carrying out a Covid-19 test on any calorie diets, presence of DDEs etc. Patients with CF-related staff that may be in contact with the individual, wearing of FFP2 diabetes should be warned re the potential risk of periodontal masks or similar. disease. The majority of PWCF take some form of inhaled This study is important as it provides the first insight into the medication and they should be advised to rinse out after use. attitudes of adults with CF towards dental treatment and gives It goes without saying that the dental surgery and all recommendations for improving provision of care to these instruments used must undergo the strictest levels of cross- patients. There is a lot of overlap between what adults with CF infection control, however the patient with CF should be want dentists to know, and what causes dental anxiety in them. reassured that all standards are being met. Therefore, if dental practitioners are educated about CF and its Dentists should endeavour to make the CF patient’s experience repercussions and make small amendments to their practice more comfortable by sitting the patient upright if possible, to based on these, it should make the dental experience less anxiety- facilitate mucus clearance. 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Dabrowska E, Błahuszewska K, Minarowska A, Kaczmarski M, Niedźwiecka- Andrzejewicz I, Stokowska W. Assessment of dental status and oral hygiene in the Correspondence and requests for materials should be addressed to Niamh Coffey or study population of cystic fibrosis patients in the Podlasie province. Adv Med Martina Hayes. Sci.2006;51 Suppl 1:100–3. 27. Hildebrandt T, Zawilska A, Trzcionka A, Tanasiewicz M, Mazurek H, Świę- Reprints and permission information is available at http://www.nature.com/ tochowska E. Estimation of proinflammatory factors in the saliva of adult patients reprints with cystic fibrosis and dental caries. Medicina. 2020;56:612. 28. Alfaraj A, Halawany HS, Al-Hinai MT, Al-Badr AH, Alalshaikh M, Al-Khalifa KS. Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims Barriers to dental care in individuals with special healthcare needs in qatif, saudi in published maps and institutional affiliations. arabia: a caregiver’s perspective. Patient Prefer Adherence. 2021;15:69–76. BDJ Open (2023) 9:11 N. Coffey et al. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http:// creativecommons.org/licenses/by/4.0/. © The Author(s) 2023 BDJ Open (2023) 9:11
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Published: Mar 11, 2023