Oral health impact on quality of life among adults with disabilities: carer perceptions
Quality of life is recognized as an important outcome of health care for people with all abilities. There has been a marked increase in interest and the number of oral health-related quality of life (OHRQoL) instruments. In the absence of adequate care, resulting oral diseases like dental caries and periodontal problems can have not only physical and functional but also social, psychological and economic impacts.1 However, there is no such study on people with disabilities for whom it is difficult to assess the quality of life, especially those with limited or no communication skills, who are unable to express pain and discomfort. They depend greatly on their carers for their daily activities including oral care and for seeking appropriate dental treatment that could have an impact on their quality of life. Carers play the ‘gate keeper role’ as a contact person of the care recipient making decisions on their behalf and the ‘supportive role’, assisting with oral care and making visits to the dentist.2 The most widely reported reason for dental visits is when a carer suspects that the care recipient might be experiencing pain by noting changes in behaviour particularly at mealtimes, followed by secondary reasons including halitosis, drooling and aspiration of food and/or liquids.3 It is the carer who is best placed to note small changes in behaviour and detect any problem. It is the carer’s perceived impact of conditions that will drive them to take their care recipient for treatment. Therefore, the overall aim was to assess oral health-related quality of life (OHRQoL) among adults with disabilities, from the carer's perspective. The specific aims were to: (1) compare reported negative impacts with indicators like oral health problems and treatment need; and (2) determine factors that are associated with reports of one or more negative impacts on OHRQoL. The study was a cross-sectional survey of carers of 18–44 year olds with physical and intellectual disabilities living in South Australia in three settings: family home, community housing and institutions. Ethical clearance was obtained from The University of Adelaide Human Research Ethics Committee in July 2004. In August 2004, 21 organizations were approached to seek their assistance in contacting carers of 18–44 year old care recipients with physical and intellectual disabilities registered with them. From the information received, the target sample was carers of 1448 disabled adults. However, after removing people who were deceased or out-of-scope due to age, and after reconciling duplicate responses, the adjusted target was 1280 care recipients. In February 2005, 12 participating organizations sent an information package to the primary carer of each registered care recipient in their database which included an information sheet on the study for the carer and the care recipient, a questionnaire for the carer and a reply-paid envelope. A reminder card was posted to all carers two weeks later and a final follow-up letter to all non-responders four weeks later. A mail questionnaire was completed by carers between February and June 2005. Questions included carer characteristics, care recipient characteristics, questions from oral health impact profile (OHIP),4 oral hygiene practices, oral health problems and perceived treatment need. From Locker's model of oral health,1 four conceptual dimensions of impact were explored – psychological disability, physical pain, physical disability and social disability – using four questions from OHIP. Questions from OHIP were: How often during the last year has your main care recipient … had trouble sleeping (psychological disability); had pain and discomfort (physical pain); had unsatisfactory diet (physical disability); been irritable (social disability)…because of a dental problem? These four questions were selected from the 49-item OHIP questionnaire4 with the assumption by the authors that observable domains like function (problem eating) or social issues (irritability) are more likely to be validly assessed. Studies show that proxies appear to provide better answers about more objective rather than subjective information, with validity of the information increasing with the closer personal relationship to the proxy.5 Responses were made on a Likert scale ranging from ‘never’ (code = 1), ‘rarely’(code = 2), ‘sometimes’ (code = 3), ‘fairly often’ (code = 4), and ‘very often’ (code = 5). The last three responses were coded as negative impact on quality of life. As a significant proportion of carers responded ‘don't know’, it was treated as an additional response (code = 6). Responses were received for 485 adults with disabilities (37.9%). The data were weighted to represent the South Australian population of adults with disabilities.6 Unweighted data were used to describe characteristics of carers and care recipients. Subsequent analyses were undertaken using weighted data. The characteristics of the carers are described in Table 1. Approximately one-third of carers were over the age of 55 and 82.3% were females. Carers comprised of family carers (51.9%) and non-family carers (48.1%) in institutions and community housing. Characteristics of the care recipients are described in Table 2. There were slightly more males than females (61.9% male, 38.1% female), with 47.4% of them living with family, 31.4% in the community and 21.2% in institutions. The main disabling conditions were intellectual disability (38.5%), autism (31.7%), cerebral palsy (19.5%) and others (spina bifida, quadriplegia, head injury) (10.4%). While 21.3% communicated non-verbally, almost a third (30.3%) of their care recipients had little or no effective communication. Non-verbal means of communications included sign language, use of picture cards/boards, writing, typed/computer messages. Other (Spina bifida, quadriplegia, head injury) Prevalence of negative impact from a dental problem on individual items like diet, sleep, behaviour, and pain and discomfort was low. About 9.2% reported a negative impact for pain and discomfort, 7.7% for irritable behaviour, 6.1% for trouble sleeping, and 3.0% related to unsatisfactory diet. However, more than one in 10 care recipients (13.5%) reportedly experienced one or more negative impacts (Impact 1+) during the last year. The proportion of ‘don't know’ for each question was higher (Table 3). A much higher proportion of carers thought their care recipient currently had both an oral health problem and dental treatment need (Table 4). Some 11.8% of carers reported not knowing whether their care recipient had an oral health problem and a slightly higher 14.7% responded ‘don't know’ for perceived treatment need. The most frequent oral health problem reported was bad breath followed by decay and bleeding gums (Table 5). Other problems included ulcers, infection, tartar build-up, tooth wear and wisdom teeth. Accordingly, the most frequent perceived treatment need reported was scaling (89.6%), followed by filling (21.2%) (Table 6). Other perceived treatment needs included general check-up and capping of worn teeth. Table 7 summarizes perceived negative impacts as reported by carers from family, community and institutional settings. About 13.5% of care recipients reportedly experienced one or more negative impacts (Impact 1+), with family carers reporting more negative impacts compared to carers from other settings (p < 0.05). Reported negative impacts were more among those who could communicate verbally than for those with little or no communication (Table 8). For all other associations, ‘don't know’ response was treated as ‘missing’. Binary logistic regression modelling testing bivariate associations was carried out to examine which care recipient and carer factors were associated with reporting of one or more negative impacts (Impact 1+). Family carers and one-on-one carers reported greater odds of their care recipient having one or more negative impacts compared to care recipients cared for by non-family carers and care recipients with 5+ carers respectively (Table 9). Family carers had just over two times the odds of reporting negative impacts (OR = 2.1, [0.97, 4.6]) than non-family carers. The odds of negative impacts reported for those receiving one-on-one care was almost five times more than for those cared for by five or more carers (OR = 4.8, [1.8, 12.9]). The younger age group, those with autism and those who communicate verbally were reported to have experienced more negative impacts than their older counterparts, those with other disabling conditions and those who lacked verbal means of communication respectively. Once a day toothbrushing, those with oral health problems and perceived treatment need were associated with higher odds of negative impact than twice a day toothbrushing, and those without oral health problems and no perceived treatment need. After adjusting for carer- and care recipient-characteristics, multivariate analysis showed that there were more reports of negative impacts for those who could communicate verbally, than for those with non-verbal and little or no effective communication. Also, those reported to have perceived dental treatment need had about six times the odds of reporting of one or more negative impacts (Table 10). Age, disabling condition, toothbrushing frequency, carer type, number of carers providing care and oral health problems were not statistically significant (p > 0.05). The low response rate seems to reflect the time constraints faced by carers of people with disabilities. There were several other reasons or comments for non-response to the questionnaires. Some returned blank questionnaires or with short comments like ‘thanks but no thanks’ and ‘happy with private practice’. Some called to say they were not willing to participate, giving reasons like they were sick of surveys that did not help them and that research is done only to get a degree. There was a 75-year-old female who called to say she was unable to complete the questionnaire and there was no one else to help her, highlighting yet another problem of ageing carers. One was too sick to participate and another had died. Over 30% of carers were over the age of 55 years, highlighting another problem in the near future when these ageing carers (especially parents) themselves become functionally dependent. The high prevalence of non-verbal and little or no effective communication in this population challenges both carers and health professionals in providing care. Carers, who are expected to best know their care recipients, were unable to report OHRQoL for a significant proportion (18%) of those with little or no effective communication skills. When they did, negative impacts reported were much lower than reported oral health problems and perceived treatment need, suggesting carers may be underestimating pain and suffering experienced by their care recipients. Furthermore, a retrospective study of 103 special needs patients in France has shown that dental needs of special care patients are severely underestimated by both their carers and the dental profession.3 It can be argued that the more frequently reported oral health problems like gum problems and bad breath may not be assessed as having a negative impact on the OHIP questions used in this survey. At the same time, it must also be noted that the gum problems in this population may be more on the extreme end of the scale compared to the general population and could be causing pain and discomfort. Bad breath could be putting off the carers from cleaning their care recipient's teeth and the problem could worsen with time and have additional negative impacts on social life. From the responses from this survey, perhaps more appropriate additional questions asked could have been: How often during the last year, has your main care recipient … had stale breath (functional limitation), had painful gums (physical pain) because of a dental problem? Family carers and one-on-one carers reported more negative impacts than other carers, suggesting that they may be more observant. Alternatively, those being cared for by family carers and one-on-one carers may in fact be having more oral health problems, perceived dental treatment need and therefore more reported negative impacts. More of the younger care recipients live at home and are cared for by parents and therefore the association between younger age group and higher reporting of negative impacts. Those with autism and other disabling conditions where care recipients are able to communicate verbally were more likely to report negative impacts. After adjusting for carer- and care recipient-characteristics, multivariate analysis showed that those who could communicate verbally and reported perceived dental treatment need had higher odds of reporting negative impacts than those who communicated non-verbally or had little or no effective communication skills, and did not report reported perceived dental treatment need. Carer's view of the oral health of their care recipients may differ from an oral health assessment obtained from a clinical examination. However, the objective was to assess OHRQoL among adults with disabilities from the carer's perspective and also understand negative impacts of oral health problems on their care recipents. Those who could communicate verbally had higher odds of reporting negative impacts than those who communicated non-verbally or had little or no effective communication skills. Those reported to have one or more negative impacts were more likely to be reporting perceived dental treatment need. Yet the prevalence of reported negative impacts was lower than the prevalence of oral health problems and dental treatment need. Carers were unable to report OHRQoL for a significant proportion of those with little or no effective communication skills. Therefore, carers need to be made aware of negative impacts of oral problems and trained to identify them by observing behavioural changes at an early stage to reduce the suffering caused by advanced disease and to improve OHRQoL. This report was supported by a Faculty of Health Sciences Divisional Scholarship, The University of Adelaide and the Australian Dental Research Foundation. The authors are grateful to the participating organizations and the South Australian Dental Service for their assistance. This article was prepared by Dr Archana Pradhan.
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