Cult Med Psychiatry (2014) 38:5–12 DOI 10.1007/s11013-013-9356-5 ORIGINAL PAPER
Social Vulnerability in Paediatric Dentistry: An Overview of Ethical Considerations of Therapeutic Patient Education Thomas Trentesaux • Caroline Delfosse • Monique Marie Rousset • Christian Herve´ Olivier Hamel
Published online: 8 December 2013 Springer Science+Business Media New York 2013
Abstract Dental caries is a multifactorial condition that remains a major public health issue in high income countries. The prevalence of dental caries in children has markedly declined in most countries over the past 30 years. However, the disease continues to affect a vulnerable population defined as a high-risk group. As many public health policies are inefficient in dealing with this underprivileged group, it is necessary to find other strategies to decrease the incidence and the burden of dental caries. Defining dental caries as a chronic disease enables us to develop the concept of ‘therapeutic patient education.’ It is meant to train patients to self-manage or adapt treatment to their particular chronic disease and to cope with new processes and skills. The purpose of this paper is to propose a new approach to dental caries, in particular to early childhood caries. That should decrease the gravity and prevalence of the disease in this specific population. As a result, this new approach could increase the quality of life of many children both in terms of function and aesthetics. Keywords
Dental caries Ethics Children Patient education
T. Trentesaux (&) C. Herve´ O. Hamel Medical Ethics and Legal Medicine Laboratory, Paris Descartes University, Research in Ethics Network, INSERM, EA 4569, Paris, France e-mail: [email protected]
T. Trentesaux C. Delfosse Department of Paediatric Dentistry, Dental School, Lille 2 University, Place de Verdun, 59000 Lille, France M. M. Rousset Cephalic Morphogenesis and Prevention Laboratory, Lille 2 University, Lille, France O. Hamel Department of Public Health, Dental School, Toulouse 3 University, Toulouse, France
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Introduction Dental caries, otherwise known as tooth decay, is a multifactorial, preventable and reversible infectious disease process. It remains a major public health issue even in high income countries (Petersen 2009). The mechanism of dental caries is now wellestablished: it is defined as the localized destruction of susceptible hard dental tissues (Selwitz et al. 2007; Gussy et al. 2006). This process is initially reversible by using fluorides. Caries in primary teeth of preschool children is commonly referred to as Early Childhood Caries (ECC). It is a particularly virulent form of dental caries that causes extensive destruction of the deciduous teeth, often very rapidly (Kagihara et al. 2009).
The Global Burden of Dental Caries Oral diseases have a big impact, from an individual point of view as well as from a collective one. When left untreated, dental caries result in pain, bacteremia, stunted growth and development, speech disorders, and premature tooth loss with its sequelae: compromised chewing ability, loss of self-esteem, and harm to the permanent dentition. Indeed, deciduous teeth are often left untreated or are extracted to relieve pain or discomfort but prosthetic devices are rarely used. Eating preferences, the quantity of food eaten and sleeping habits can change (Low et al. 1999). Aesthetic sequelae only add to the social disadvantage from which these children already suffer. Moreover, poor oral health may have a profound impact on general health, and several oral diseases are related to chronic diseases (Petersen et al. 2005a, b) like diabetes and obesity. Dental diseases have an impact on the child’s well-being and quality of life. Tooth decay not only affects the child’s overall health but has other ramifications such as school absenteeism for the children and work absenteeism for the parents (Savage et al. 2004). According to the US Surgeon General’s Oral Health Report published in 2000, over 51 million school hours are lost each year due to dental diseases (Nunn et al. 2009). Dental caries often require hospitalization for dental extractions under general anaesthesia. Moreover, in spite of the aggressive treatment, the recurrence of ECC after general anaesthesia is important (Foster et al. 2006). As a result, treatments are expensive. In many industrialized countries, oral diseases are the fourth most expensive diseases to treat: it has been estimated that if treatment were available for all, the costs of dental caries in children alone would exceed the total healthcare budget for children (Petersen et al. 2005a, b). Fortunately, the prevalence of dental caries in children has declined markedly over the past 30 years in most countries. This is the result of a successful implementation of a number of public health measures including an effective use of fluorides (Bratthall et al. 1996), changes in living conditions and lifestyles and improved self-care practices. But there are many disparities. Very resistant pockets of disease remain in certain demographic groups (Duffin 2009). For example, many children and people with poor education or low socioeconomic status (Savage et al.
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2004; Sohn et al. 2004), ethnic minority groups and individuals with developmental disabilities are defined as high-risk groups (Selwitz et al. 2007). One should not generalize (Meurman et al. 2009; Minah et al. 2008) but many programmes and healthcare public policies can be said to be partially inefficient in reducing dental caries rates in these populations (Vanobbergen et al. 2004). A total of 80 % of all ECC is experienced by 24 % of children (Nunn et al. 2009). The children most affected are those who received the least care (Azogui-Le´vy et al. 2003). Different reasons can explain the lack of care in certain populations. First, there is the widespread idea that the deciduous teeth are going to fall anyway; fear over visiting a dentist; parental anxiety about their own dental care and also about their children having dental/medical procedures, and economic barriers to accessing early preventive care (Roberts 2008).
Dental Caries, a Chronic Disease As a result of these concerns (most often voiced by parents), it is extremely important to look for solutions. In 2002, the World Health Organization (WHO) Global Oral Health Program was reoriented according to a new strategy: dental caries have been included in chronic disease prevention and general health promotion (Petersen 2009). The risk factors for several chronic diseases are common to most oral diseases (Mignogna and Fedele 2006), and the common risk factor approach is a new public health strategy for the effective prevention of oral disease (Petersen 2005). This approach is justified by the fact that dental caries is a chronic disease that progresses throughout the lifetime of most people. Many authors consider it the most common chronic disease of childhood (Gussy et al. 2006; Kagihara et al. 2009; Nunn et al. 2009; US Department of Health and human services 2000; RamosGomez et al. 2002); moreover, ECC is a predictive factor for dental caries in adulthood even if risk factors can change in the course of a lifetime. It is thus essential to change common risk factors to oral health and chronic diseases (Petersen et al. 2005a, b), particularly dietary and nutritional factors (Moynihan and Petersen 2004) and also many socio-environmental factors that are distal causes of oral diseases (Petersen 2005).
Therapeutic Patient Education It is important that ECC and dental caries in general should be included in chronic disease prevention programmes of therapeutic patient education for underprivileged groups. However, information alone is insufficient; many patients do not comply with their dentist’s instructions and fewer than 50 % of them follow the recommended treatment. Patients sometimes turn to the Internet for information. Internet-based databases and search engines have already acquired a significant role as sources of up-to-date healthcare information. But healthcare professionals must be prepared to face
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misinformed patients and be able to direct them to reliable sources of qualityassured healthcare information (Mattheos 2007). Education can be defined as actions or processes meant to facilitate the formation and development of a person’s physical, intellectual, sensory-motor and affective characteristics. Therapeutic patient education should enable patients to acquire and maintain capacities that allow them to optimally manage their lives with their disease. It is therefore a continuous process, integrated into their overall healthcare. Education is patient-centred and includes organized awareness, information, selfcare learning and psychosocial support regarding the disease as well as prescribed treatment, care, hospital and other healthcare environments, organizational information, and behaviour related to health and illness. It is designed to help patients and their families understand the disease and the associated treatment, cooperate with healthcare providers, live in good health, and maintain or improve their quality of life (World Health Organization 1998). Therapeutic patient education has initially been developed for chronic diseases like diabetes or asthma. Therapeutic patient education relies on an agreement made between patients and healthcare providers on what the patient is expected to do with the help of healthcare providers, in order to manage his disease and the treatment given. The aim is to meet, adjust or adapt in order to overcome personal problems, difficulties, and challenges.
Therapeutic Patient Education and Vulnerable Populations In Sweden, Wendt et al. showed that the mean caries increment between 3- and 6year old was greater in groups of immigrants than in the general population (Wendt et al. 1999). High risk groups must be defined very precisely, but once identified two possibilities exist for treatment of the vulnerable population. First, health prevention can be integrated into existing therapeutic education programmes. For example, diabetic patients should be given information and taught techniques to prevent oral diseases that can destablize their condition. Second, patients who have these vulnerabilities (specifically many dental caries) could be integrated into specific therapeutic education programmes. In both cases, it is necessary to focus on a vulnerable population and to resort to a multidisciplinary system. Many caregivers could take part in such programmes: dentists, physicians, paediatricians, dieticians or hygienists… Indeed, prevention and control of dental caries can be promoted by clinicians other than dentists (Luciak-Donsberger 2003), provided they are properly trained. Caregivers of children, especially those working in Maternal and Child PMI centres,1 could play a major role in keeping children free from dental caries (Selwitz et al. 2007). Healthcare professionals in paediatrics are far more likely to meet mothers and young children than are dentists (Droz et al. 2006). Paediatricians can advise parents on risk factors related to caries formation even before a child’s teeth begin to erupt
Service de Protection Maternelle et Infantile, the French public system for mother and childcare.
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and can include anticipatory guidance on oral health-related topics during well-child visits (Nunn et al. 2009). The role of patients’ families is also very important in the day-to-day management of chronic diseases. As a consequence, therapeutic patient education aims at educating both the child and the child’s family. In therapeutic patient education for dental caries, the intervention is all the more efficient as it comes early in the child’s life. Plutzer and Spencer described an oral health promotion programme based on repeated rounds of anticipatory guidance initiated during the mother’s pregnancy that was successful in reducing the incidence of ECC in very young children (Plutzer and Spencer 2008). It is necessary to approach children at a younger age (Nunn et al. 2009; Adam et al. 2005) and it is important for both parents and child to maintain a good oral health and good oral health habits during pregnancy as well as after the birth of the child (Meurman et al. 2009). Moreover, for high-risk groups, it is essential to meet the dentist before obvious dental caries appear (Soxman 2002). The American Academy of Paediatric Dentistry and the American Dental Association recommend that the first dental visit should occur no later than 12 months of age (Savage et al. 2004; Malik-Kotru et al. 2009). This approach should be developed and maintained throughout life. As a systematic review of the available evidence regarding the efficiency of programmes and interventions show that dental health interventions have a small positive but temporary effect on plaque accumulation and no discernible effect on caries increment (Kay and Locker 2006). It is very important to educate individually, or in small groups, these children and to repeat educational opportunities regularly.
Ethics Therapeutic patient education requires a patient to change his identity to meet a medical ideal. This change raises many ethical questions. The most common error made by caregivers is to usurp the patient’s choice by assuming someone else’s goal (societal and or provider), or to deprive the patient of the knowledge and skills necessary to exercise his choice (Redman 2008). As a result, it is very important to inform the child and its parents of the positive impact of therapeutic education programmes. The objective is to get patients or their parents accustomed to act as co-decision-makers in the treatment, thereby granting them highly desired autonomy (Adewumi et al. 2001). However, every practice that targets a clearly defined population is bound to raise questions and create tensions. What criteria will be used to select those who will take part in therapeutic programmes? How can we justify these criteria? Is the will to change the behaviour of the young child and of its family circle an instrument of social control that may infringe on the freedom of the subject? Or, on the contrary, is it simply to be considered a fully ethical action aiming at improving the child’s health? The objective is not to impose health standards or to normalise behaviours but to develop the competences of this high-risk population in order to come back to a good oral health state. The quality of life of the child is thus improved.
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Finally, this raises the question of the training of dentists who are primarily caregivers and not education specialists. Dentists must be trained to educate their patient so they may manage the treatment of their condition and prevent avoidable complications. Though most physicians are highly competent in diagnosis and treatment, too few educate their patients. Giving education its right place in dentistry means shifting to a new paradigm by switching from a treatment-based culture where treatment costs are supported by social agencies, to a culture of prevention and also means looking for a way of combining these two approaches. A reflection on this subject is essential when implementing therapeutic education programmes in dentistry and more particularly in paediatric dentistry. To be legitimate, this reflection must include a more precise definition of the notions of information, consent, and autonomy. These will empower the patient, considered a subject and actor of his/her own health care strategies, and enable him/her to accept or refuse to take part in such programmes. And last, but not least, one should not forget the triangular relationship between the child, its parents and the practitioner. Although complex, it is essential to take this triadic relationship into account in paediatric dentistry.
Conclusion Dental caries is now recognised as the most common chronic disease in childhood. For specific high-risk groups, many health prevention programmes are inefficient. Moreover caries are a disease process that needs to be managed throughout a person’s lifetime. This necessity for life-long management indicates that therapeutic patient education may reduce the burden and the gravity of dental caries. Therapeutic patient education enables people with a chronic disease to manage their condition and yields benefits both in healthcare, aesthetics, and in financial terms. It appears to be an essential part of the treatment of long-term diseases that can maintain and/or improve the quality of life. However, different types of therapeutic patient education have been introduced in various healthcare environments but they have often been arbitrarily designed and poorly taught. There is an obvious need for better quality educational programmes with a therapeutic intent. Finally, it is necessary to build therapeutic patient education programmes in dentistry and to assess their efficiency.
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