Australian Dental Journal

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1 Australian Dental Journal The official journal of the Australian Dental Association Australian Dental Journal 2014; 59: doi: /adj Oral health and dental treatment needs of people with motor neurone disease CM Tay,* J Howe, GL Borromeo* *Melbourne Dental School, The University of Melbourne, Victoria. Calvary Health Care Bethlehem, Caulfield, Victoria. ABSTRACT Background: People with motor neurone disease (MND) may present with physical limitations impacting on oral health and access to oral health care. This study aimed to assess the oral health status and treatment needs of people with MND in Victoria, Australia. Methods: Patients with advanced MND attending a multidisciplinary MND clinic in Melbourne were recruited. Data collection included self-reporting questionnaires on previous dental experience, current oral hygiene practices and current dietary habits, a medical questionnaire, and a clinical examination charting participants dentition, restorations, caries and periodontal status, plaque and gingival indices, and assessment of oral health. Results: Thirty-three participants took part in the study with eight self-reporting regular dental visits. No participant exhibited probing depths of more than 3 mm. Ten out of 27 dentate participants required extractions and restorations for retained roots and caries, while three presented with non-carious cavities, lost restorations and fractured cusps. Oral health status was not affected by MND presentation in these participants. Conclusions: The study found that oral health was not affected by advanced MND. Participants and clinical teams motivation towards oral health care may have contributed to oral health. The dental profession should be involved as part of the multidisciplinary effort towards ongoing care. Keywords: Dental disease, motor neurone disease, oral health. Abbreviations and acronyms: MND = motor neurone disease; NIV = non-invasive ventilation; OHAT = Oral Health Assessment Tool; PEG = percutaneous endoscopic gastrostomy. (Accepted for publication 2 December 2013.) INTRODUCTION Motor neurone disease (MND) constitutes a group of chronic neurodegenerative disorders characterized by selective death of upper motor neurones in the cortex, and lower motor neurones in the brainstem and spinal cord. There are four main variants described clinically, namely amyotrophic lateral sclerosis, primary lateral sclerosis, progressive muscular atrophy and progressive bulbar palsy. Disease presentation is varied, depending on region of onset with limb onset the greatest (75%), followed by bulbar (20% to 42%) and initial trunk or respiratory involvement (5%). 1,2 As the disease progresses, most suffer involvement of the limbs, thoracic and bulbar muscles, involving both the upper and lower motor neurones. 1 Bulbar symptoms including dysphagia, oromotor dysfunction, drooling and aspiration can predispose to malnutrition, social embarrassment and social isolation in addition to intraoral food retention, oral hygiene avoidance secondary to aspiration fear and perioral infections. 3,4 Hence oral hygiene maintenance, access to dental care, ambulation and chair transference are all potential problems for those affected with MND. In 2007, prevalence of MND in Australia was 1 in with an incidence of 2.65 per and a median survival between 30 to 39.2 months from onset and a 7 28% five-year survival rate. 5 7 Dental literature on MND is limited with only five case reports and a single case series Management guidelines are limited and include prostheses to alleviate bulbar symptoms of dysarthria, dysphagia and traumatic biting, gagging prevention via avoidance of contact with intraoral soft tissues and avoidance of topical anaesthetic application The aim of this study was to assess the oral health of people with MND in Victoria, Australia, and determine their dental treatment needs in order to incorporate oral health as part of total healthcare management Australian Dental Association 309

2 CM Tay et al. MATERIALS AND METHODS Subject selection All MND patients attending the MND Clinic at Bethlehem Hospital between July 2010 and January 2011 were invited to take part in the study. The only inclusion criterion was a positive diagnosis of MND performed by a staff neurologist. Patients were not excluded on the basis of MND subtype, ability to speak and comprehend English, or level of cognitive impairment, as determined by the clinical team. All consenting participants completed a self-reporting questionnaire and underwent a clinical examination. In addition, the neurologist in charge was asked to complete a medical questionnaire. Self-reporting questionnaire The self-reporting questionnaire consisted of three components: (1) previous dental experience; (2) current oral hygiene practices including preventive oral health measures; and (3) current dietary habits. Medical questionnaire Medical questionnaires completed by the neurologist consisted of items relating to the MND symptomatology, other medical comorbidities and a list of current and previous medications. Clinical examination A single examiner conducted all clinical examinations in a routine medical examination room at Bethlehem Hospital using overhead wall-mounted lighting. The dentition was dried using sterile gauze. Dentition, restorations, caries status and periodontal pocket depth were recorded. Periodontal pocket depth was measured on the mesiobuccal, mid-buccal and distobuccal surfaces of all existing teeth. Plaque and gingivae were assessed using Plaque and Gingival Indices. 14,15 The buccal surface of up to six index teeth, namely the most anterior molar in each quadrant, 11 and 31, were assessed. Where 11 was missing, 21, 22 or 12 were assessed. Removable dental prostheses were excluded from the plaque assessment. The Oral Health Assessment Tool (OHAT) was employed to assess the participant s oral health by the principal researcher. 16 Ethics approval Ethics approval was obtained from the University of Melbourne (Ethics ID: ) and Bethlehem Healthcare (Research Application No ). The ethical guidelines as issued by the National Health and Medical Research Council (Australia) were adhered to. RESULTS Thirty-six participants took part in the study. Three participants withdrew, one expressing fear of aspiration during intraoral examination, one due to deterioration in respiratory symptoms and one passed away. Table 1 depicts the current age and gender breakdown of participants according to onset of MND symptoms. Thirty per cent of patients presented with depressive symptoms, 9% with dementia of which two had frontotemporal dementia, 30% had other medical comorbidities such as ischaemic heart disease and 45.5% were on medications not directly related to MND. Reasons for non-dental attendance were varied with dental treatment needs being greater in non-dental attenders (Table 2). Three of the 27 dentate participants presented with non-carious cavitations, lost restorations and fractured cusps, and 10 had retained roots or carious teeth (Table 3). None of the participants exhibited probing depths of more than 3 mm. Five participants had full and nine had partial dentures with three partial dentures requiring repair or readjustment. There was no significant difference amongst participants with regard to either status of the dentition or oral hygiene when stratified according to presenting region of MND onset. Plaque and gingival indices and hence oral health status were not affected in patients who exhibited dysphagia, masseteric spasticity, oromotor involvement, percutaneous endoscopic gastrostomy (PEG) feeding, upper limb involvement, noninvasive ventilation or Riluzole usage. Hence oral health status was not affected by either bulbar or cervical onset of disease with most participants (63%) having plaque index scores between 1 and 2. In terms of diet, 57.6% of patients reported a nonmodified diet consistency. However, of the patients with bulbar onset only 30% had a non-modified diet. When considering diet in relation to individuals who had dysphagia (72.7% of patients), 50% had no change to their diets while 37.5% had diets that were chopped (4.2%), finely chopped (20.8%), pureed (8.3%) or thickened (4.2%). Of those with dysphagia (12.5%) were PEG fed. Patients reported consuming sweet biscuits (51.5%), carbonated drinks (21.2%), fruit or vegetable juices (60.6%), and sugar in tea (15.2%) or coffee (27.3%). Table 1. Current age and gender of participants stratified by region of MND onset Region of onset Total number Age (years) +/ standard deviation Male Female Bulbar / 19.1 (n = 5) / 9.0 (n = 5) Cervical / 13.1 (n = 8) / 5.7 (n = 2) Thoracic 1 62 (n = 1) - Lumbar / 13.8 (n = 7) / 7.8 (n = 5) Australian Dental Association

3 Table 2. Reasons for irregular dental visits among dentate participants and their oral findings Oral health and motor neurone disease Reasons for irregular dental visits Access issues Not feeling need to do so Previous negative experience Financial reasons Others (too much happening) Oral findings Caries (3 or more) or retained roots Caries (less than 3) Non-carious cavities only Require denture adjustment or repair Does not present with any finding listed above Total number (n = 19) Table 3. Summary of dentate participants dental treatment needs presenting to Bethlehem Hospital during the study period Description Regular dental attenders Irregular dental attenders Participants with 0 0 periodontal pocket depths of more than 3 mm and abnormal tooth mobility Participants with 2 2 retained roots and/ or carious teeth (3 and above) Participants with retained 2 4 roots and/or carious teeth (less than 3) Participants with noncarious 1 2 cavities, lost restorations or lost cusps only Dentate patients with partial 1 2 denture requiring repair or readjustment only Dentate patients with no 2 9 issues listed above Total (n = 27) 8 19 The time between date of MND diagnosis and date of dental examination varied between two and months, and was neither related to region of disease onset or affected oral health status or regularity of dental visits. DISCUSSION This study assessed the oral health status of people with MND and found that overall, oral health was better than would be anticipated in individuals with significant physical disabilities and medical complications as seen in MND. Bethlehem Hospital (Calvary Health Care Bethlehem) is the largest referral centre for patients with end- stage neurodegenerative disorders in Victoria, Australia. Despite this, the sample size in the present study was low, possibly reflected in disease rarity, difficulty encountered during the recruitment process due to the illness itself or connotations associated with it and the perception amongst this cohort that they did not have any dental treatment needs. Interestingly, 15 participants self-reported no need for regular dental visits even though five presented with retained roots and/or carious lesions. The study findings did not show a clear link between MND and poor oral health status, perhaps linked to the input from staff in the present facility. Whilst the findings may have suggested the lack of association between periodontitis and MND, caution is warranted as study numbers were low. In addition, periodontal involvement requires consideration of not just the probing depths and tooth mobility but also attachment loss, which was not measured in this study. Moreover, periodontal pocket depth was measured only on the mesiobuccal, mid-buccal and distobuccal surfaces of all existing teeth due to difficulty associated with the gag reflex when probing the lingual aspect. Frequent patient mobility also resulted in difficulty associated with probing. There is currently no literature directly reporting periodontal status of individuals with MND, perhaps due to the same issues of data collection as was seen in the present study. A multidisciplinary approach towards management of people with MND has been associated with better coordination of care and prolonged survival. 17,18 Bethlehem Hospital provides highly specialized palliative and neurological care services to patients with advanced neurodegenerative diseases. It is the largest public service catering for individuals with MND and consists of 30 neurological inpatient beds. Three multidisciplinary clinics operate per week, catering for 200 patients with MND annually. The facility had previously housed an in-house dental chair that was removed due to financial constraints. Whilst not directly measured, the level of oral care exhibited by patients was potentially attributed to involvement of staff at this facility who were motivated towards oral care as part of overall patient health care. Staff were aware of the importance of oral health, possibly because many had been present when there was an in-house dental facility. Patients reported that staff assisted in daily oral health care. It is recognized that involvement of caregivers in 2014 Australian Dental Association 311

4 CM Tay et al. oral hygiene maintenance to allow continuity of oral care is important. 19 Moreover, as caregivers can overestimate disease burden severity on affected participants, they might persist in providing oral care even without reminders or requests from the participants who might place it at a lower priority. 20 In the present study, participants self-reported the staff cleaned their teeth regularly during their admissions, which was in contrast to other residential care facilities. 21 A key feature of the current facility was in-patient staff were highly skilled in dealing with neurodegenerative diseases and placed a high priority on oral supportive measures, which was reflected in the oral health status of residents and outpatients. Three participants withdrew, potentially highlighting the implication of MND disease progression on participation in clinical studies. 22 However, in critically ill patients understanding oral health is imperative to reduce life-threatening conditions such as aspiration pneumonia. 23 One of the participants who withdrew reported reluctance in toothbrushing due to choking, which highlights a challenge associated with bulbar symptoms in MND. 3 It should be noted other patients with severe bulbar symptoms were able to perform oral hygiene tasks, suggesting in some patients reassurance and constant assistance may be required. Psychological symptoms have been shown to be present in individuals with MND, 24 which was seen in the present study whereby 33% of participants reported depressive symptoms. Furthermore, MND progression is reported to be associated with a perception of decline in health. 22 Despite this, depressive symptoms and perceptions of declines in health did not impact on oral health in this study. Ambulation secondary to lower limb involvement is also a consideration in MND, with five participants reporting irregular dental visits due to inability to access a dentist. Access to dental services for patients with physical disabilities is a common finding. 25 Infrastructure to support wheelchair access, as well as use of a domiciliary dental service may be considerations to overcome this barrier. 25 Time constraints associated with multidisciplinary consultations together with travel time to and from hospital also potentially contribute to poor oral health in those with complex medical needs, not to mention study participation. Some participants in the current study were required to travel from interstate and hence were less willing to participate in this study, particularly if it involved prolonged time in the clinic. Fatigue, which had been reported in 44% of people with MND, often resulted in deferment of the dental examination in this study, highlighting the lack of importance placed on oral health for some individuals. 25 Clinical features of MND were consistent with reported findings, with bulbar onset being more frequent in females and lumbar in males Age of onset of MND has been reported to influence the frequency of initial symptoms with dysarthria, dysphagia, neck weakness and respiratory disturbance being more frequent in patients with onset at an older age, while upper or lower limb weakness is observed more frequently in patients diagnosed at a younger age, which was supported in the present study. 29 In the present study 72.7% of patients reported issues with dysphagia but despite this the majority of patients did not have modifications to their diets. Others have also shown a link between dysphagia and MND. 12,13 Diet modifications including thickened consistency, less flaky foods, and increased viscosity are also reported beneficial in individuals with dysphagia issues During the course of data collection, health care staff reported concern for halitosis in patients at this facility. This was noted in three patients in the study. Halitosis is a symptom that manifests as a result of multiple aetiologies such as diet, poor oral hygiene and mouth breathing and is associated with implications on quality of life. A person with MND may be more vulnerable to halitosis due to oral hygiene limitations secondary to bulbar and upper limb involvement or mouth breathing secondary to respiratory involvement. 2 In relation to halitosis, emphasis on good hygiene practices should be a priority as it would for any patient regardless of their medical condition. There is evidence to suggest that sialorrhoea might be a potential problem in those with amyotrophic lateral sclerosis. 33 Participants in this study who were on noninvasive ventilation (NIV) were more distressed about problems with secretions than participants who were not, suggesting that interventions to manage drooling were pertinent and together with this consideration of the impact of reducing quality and quantity of saliva on oral health. It may also be that these issues are more of a concern for patients than oral disease such as caries and periodontal disease, which at least from the results of this study, did not appear to be as relevant. Pharmacological management for sialorrhoea such as amitriptyline can also be problematic as these medications may swing the affected patients from sialorrhoea into salivary gland dysfunction, and therefore possibly tilt the fine balance between oral health and dental caries. CONCLUSIONS MND can have dental ramifications, including poor or compromised oral health that may be related to drooling and swallowing issues. The current study showed this was not the case in the current cohort, possibly reflected in the palliative care teams motivation towards oral health care Australian Dental Association

5 Oral health and motor neurone disease ACKNOWLEDGEMENTS The authors would also like to acknowledge Dr Susan Mathers for her support in this research and Mr Graham Hepworth for his assistance in statistical analysis. This study had been funded entirely by the Postgraduate Research Fund, Melbourne Dental School, The University of Melbourne. The authors declare no conflict of interest. REFERENCES 1. Kiernan MC, Vucic S, Cheah BC, et al. Amyotrophic lateral sclerosis. Lancet 2011;377: Traynor BJ, Codd MB, Corr B, Forde C, Frost E, Hardiman OM. Clinical features of amyotrophic lateral sclerosis according to the El Escorial and Airlie House diagnostic criteria: a population-based study. Arch Neurol 2000;57: Hughes TA, Wiles CM. Palatal and pharyngeal reflexes in health and in motor neuron disease. J Neurol Neurosurg Psychiatry 1996;61: Ferguson TA, Elman LB. Clinical presentation and diagnosis of amyotrophic lateral sclerosis. 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J Neurol Sci 2009;276: Cassens D, Johnson E, Keelan S. Enhancing taste, texture and appearance, and presentation of pureed food improved resident quality of life and weight status. Nutr Rev 1996;54:S Dieticians Association of Australia and Limited TSPAoA. Texture-modified foods and thickened fluids as used for individuals for dysphagia: Australian standardized labels and definitions. Nutr Dietet 2007;64:S53 S Garcia JM, Chambers E, Clark M, Helverson J, Matta Z. Quality of care issues for dysphagia: modifications involving oral fluids. J Clin Nurs 2010;19: Young CA, Ellis C, Johnson J, Sathasivam S, Pih N. Treatment for sialorrhea (excessive saliva) in people with motor neuron disease/amyotrophic lateral sclerosis. Cochrane Database Syst Rev 2011:CD doi: / CD pub2. Address for correspondence: Associate Professor GL Borromeo The University of Melbourne Melbourne Dental School 720 Swanston Street Melbourne VIC borromeo@unimelb.edu.au 2014 Australian Dental Association 313