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ORAL HEALTH IN AMERICA: A REPORT OF THE SURGEON GENERAL Effects on Well-being and Quality of Life Fifty years ago the World Health Organization (WHO) defined health as the "complete state of physical, mental, and social well-being and not mere- ly the absence of infirmity" (WHO 1948). In its defi- nition the WHO acknowledged that an individual who is technically "cured" of disease may not neces- sarily be "well" and went on to indicate three dimen- sions of well-being. Physical well-being assumes the ability to function normally in activities such as bathing, dressing, eating, and moving around. Mental well-being implies that cognitive faculties are intact and that there is no burden of fear, anxiety, stress, depression, or other negative emotions. Social well- being relates to ones ability to participate in society, fulfilling roles as family member, friend, worker, or citizen or in other ways engaging in interactions with others. The WHO declaration resonated with ongoing developments in the social sciences as theoreticians recognized the need for multiple indicators in assess- ing health and treatment outcomes (Bergner et al. 1981, Fries et al. 1982, Hunt et al. 1985, Meenan et al. 1980). These efforts led to definitions of "health- related quality of life" (Guyatt et al. 1993) as well as explanatory models. The model proposed by Wilson and Cleary (1995), for example, posits five dimen- sions by which to measure treatment outcomes: bio- logical and physiological variables, symptom status, functional status, general health perceptions, and overall quality of life. These factors are not inde- pendent but may be reciprocally connected. For example, a diabetic patient with symptoms of depres- sion may experience a rise in serum glucose as a result of less vigilant glucose monitoring; the depres- sion may then lead to a deterioration in physical and social activities. Most importantly, measures of bio- logical and physiological factors are often inconsis- tent with patients' own reports of symptoms, ability to function, general health perceptions, and overall quality of life. In the wake of these developments in general medicine, researchers began to elaborate multidimensional models of "oral-health-related" quality of life. The efforts to understand these relationships are particularly relevant given the aging of the popula- tion. As Gift and Atchison (1995) stated, measuring health-related quality of life allows assessment of "the trade-off between how long and how well peo- ple live." Diseases and disorders that result in dental and craniofacial defects can thwart that goal, disturb- ing self-image, self-esteem, and well-being. Oral- facial pain and loss of sensorimotor functions limit food choices and the pleasures of eating, restrict social contact, and inhibit intimacy Oral complications of many systemic diseases also compromise the quality of life. Problems with speaking, chewing, taste, smell, and swallowing are common in neurodegenerative conditions such as Parkinson's disease; oral complications of AIDS include pain, dry mouth, mucosal infections, and Kaposi's sarcoma; cancer therapy can result in painful ulcers, mucositis, and rampant dental caries; and periodontal disease is a complication of diabetes and osteoporosis. Prescription and nonprescription drugs often have the side effect of dry mouth. The ability to measure the quality of life has the practical value of guiding policymakers, health serv- ice researchers, epidemiologists, program evaluators, and clinicians interested in the effects of interven- tions. The measures can also provide useful informa- tion to patients and family members, third-party pay- ers, and employers. For example, measures of the ability to perform activities of daily living may inch- cate areas where the patient is able and competent, as well as areas where further therapy may be helpful. This chapter reviews oral-health-related quality of life findings along functional, psychosocial, and economic dimensions, taking into consideration the ORAL HEALTH IN AMERICA: A REPORT OF THE SURGEON GENERAL 133 Effects on Well-being and Quality of Life influence of cultural and spiritual values. The results of studies in which investigators asked adults how they value their oral health and whether they are sat- isfied with their oral health care are included. The study of the association between oral health and quality of life is a relatively new but rapidly growing field. A variety of questionnaires have been designed to assess oral-health-related quality of life, and the chapter concludes with a discussion of their use in surveys and analytic studies, and their potential importance in outcome research. THE CULTURAL CONTEXT The determination of the health-related quality of life of an individual is implicitly made against a cultural background that includes a set of values, standards, customs, and traditions associated with a particular society. Decisions about whether to seek care from a den- tist, a physician, or other care provider may be influ- enced by cultural or ethnic perspectives and under- standing (Aday and Forthofer 1992, Andersen and Davidson 1997, Davidson and Andersen 1997, Diehnelt et al. 1990, Kiyak 1993, Lee and Kiyak 1992). Different population groups differ in the way they think about health, and in how they define a health problem, determine its seriousness, and decide whether to seek care. In one cultural setting a painful tooth may be enough to motivate care seek- ing. In another, bleeding, swelling, or fever may be necessary before care is sought. Similarly, decisions about whether to comply with a suggested treatment regimen, whether to engage in self-care, and whether to return for a follow-up appointment are also cul- turally influenced. The anthropology and ethnography literature is rich in references to the ways in which different cul- tures at different times and places have regarded the human body (Hufford 1992, Kleinman 1979). Cultural beliefs regarding the body, health, and dis- ease are often embedded in religious or spiritual traditions, which in turn may govern how diseases and disorders are regarded and treated. A brief des- cription of Western and non-Western perspectives follows. Cultural Models In the medical model typical of Western society the body is partitioned into organs and systems, each with identifiable functions. The body is seen as func- tioning well unless disease disrupts it. Diseases in themselves are understood to be invariable across cultures. The medical model has traditionally dichotomized body and mind/soul/spirit-science and magic. Such a perspective sees the body as rela- tively objective and value-free, immune to nonso- matic influences. That perspective began to change with the pio- neering work of Hans Selye in the 1930s on the importance of stress in health and disease (McEwen 1999). Research in the intervening half century has confirmed the reciprocal connections of the nervous, endocrine, and immune systems, not only in relation to stress, but also in terms of the effects of emotions and cognitive processes on health status. The model that has emergkd as a new paradigm in the study of health and disease incorporates bio- logical with psychological and social factors. This biopsychosocial model is defining agendas for research in such fields as behavioral medicine and psychoneuroimmunology Social and psychological factors are routinely incorporated into health assess- ments, the better to describe the quality of life. Other societies hold views of the body strikingly different from the medical model. In some cultures, individu- als and their care providers conceive of the body as the union of soul and soma. Illness may occur as a result of a "failure in harmony" or "an imbalance of forces." Schools of medicine in China, India, and other non-western societies incorporate such princi- ples into their teaching and practice (Hufford 1992). Combining Perspectives All Americans hold culturally influenced perspec- tives on healing and illness (Henderson et al. 1997), some of which come from more traditional beliefs. Some people accept pain as an inevitable part of ill- ness, a necessary evil, or even punishment for past iniquities or shortcomings and may shun pain-reliev- ing drugs (Zborowski 1952). Many pragmatically combine cultural, folk, complementary, and altema- tive healing practices with participation in conven- tional care delivery systems. A recent survey indi- cates that over 50 percent of Americans sought non- traditional therapies for a number of ailments (Eisenberg et al. 1998). Traditional beliefs are often comforting and satis- fying to individuals (Selikowitz 1994). Certainly, Western culture and science have not always improved the quality of people's lives (Harris et al. 1993). Dietary changes to refined foods have been associated with dental caries (Godson and Williams 1996, Navia 1994), obesity, and other deleterious health changes (Selikowitz 1994). The marketing of tobacco products has added to the burden of cancer 134 ORAL HEALTH IN AMERICA: A REPORT OF THE SURGEON GENERAL and heart and lung problems worldwide. Migrations from traditional community rural life to urban cen- ters have been associated with family disruption and Iiolence, drug abuse, sexually transmitted diseases. and hypertension in developing countries. On the other hand, Western science may inform some cultural groups that certain traditional child- rearing practices can be detrimental to oral health (Kolasa 1978, Scheper-Hughes 1990). Early child- hood caries is a form of tooth decay with complex etiologies. Researchers studying high rates of infant caries among some cultural groups are exploring the extent to which traditional means of soothing crying babies or handling bedtime routines play a role, as xvell as investigating prenatal nutrition and transmis- sion of infection from caregiver to child (Febres et al. 1997, Kelly and Bruerd 1987, Ripa 1988, Tinanoff and O'Sullivan 1997). People who hold different cultural perspectives may distance themselves from Western, scientific worldviews (Lee et al. 1993), a behavior that must be addressed in any program of health promotion and disease prevention. Health professionals who under- stand indigenous or local healing practices and con- cepts are better able to motivate patients and thereby enable them to integrate elements from various heal- ing systems (Kleinman 1979). America is undergoing major demographic changes, with the expectation that at some point before 2050 the white population will no longer represent the majority (Henderson et al. 1997). As these changes occur, cultural elements that now reflect minority groups may become more accepted and dominant. However, cultural values are neither static nor omnipotent in shaping people's lives. Furthermore, individuals within a culture manifest their cultural identity in different ways. Therefore, both the direction of these changes and their effects may be hard to predict. ORAL-HEALTH-RELATED QUALITY OF LIFE DIMENSIONS Multiple factors act and interact in determining one's quality of life, as Wilson and Cleary (1995) and others have observed. Thus the idea of assessing quality of life along multiple "dimensions" implies a departure from a simple linear scale with excellent quality of life at one end and greatly diminished quality of life at the other. The following sections explore several dimensions, beginning with effects along functional and psychosocial dimensions and concluding with a discussion of economic effects on quality of life. Effects on Well-being and Quality of Life Functional Dimensions Investigators have reported on the effects of dental and craniofacial diseases on the ability to eat and enjoy the full range of dietary choices. The impact of less-than-optimal oral health also has been studied in relation to sleep problems, primarily in relation to oral-facial pain. Eating Both dental and systemic diseases can profoundly affect appetite and the ability to eat, and hence can compromise overall health and well-being. Because chronic illness and medications increase in aging populations, these effects may be particularly evident among the frail elderly (Ship et al. 1996). Undernutrition was observed in 50 percent of geri- atric residents in a U.S. long-term care facility; in many cases, it was linked to eating and swallowing problems (Keller 1993). Less severe oral disorders have more subtle effects on functions relating to eating, although the high prevalence of those disorders elevates their rela- tive importance among health problems. For exam- ple, data from the National Health and Nutrition Examination Survey III indicate that 33.1 percent of people aged 65 and older have no teeth (Marcus et al. 1996). Furthermore, clinical studies indicate that the masticator-y efficiency of replacement teeth is at least 30 to 40 percent lower than that of natural teeth (Idowu et al. 1986). Consistent with these findings, surveys of elderly populations in the United States indicate that self-reported chewing problems affect significant proportions of people. For example, in California 1 percent of Medicare enrollees were unable to swallow comfortably, whereas 37 percent of senior center residents reported trouble biting or chewing foods (Table 6.1). A number of studies have indicated that having missing teeth is linked to a qualitatively poorer diet. For example, in studies of U.S. veterans (Chauncey et al. 1984), Canadians (Brodeur et al. 1993), and Finns (Ranta et al. 1987), people with impaired dentitions preferred soft, easily chewed foods that were lower in fiber and had lower nutrient density than foods eaten by people with intact dentitions. Quality of life clear- ly suffers when individuals are forced to limit food choices and the foods chosen do not provide optimal nutrition. For example, they would be hard put to comply with the healthful diet recommendation of "five-a-day" helpings of fiber-rich fruits and vegeta- bles. In the elderly, edentulousness and poor oral health may contribute to significant weight loss, ORAL HEALTH IN AMERICA: A REPORT OF THE SURGEON GENERAL 135 Effects on IYell-being and Quality of Life TABLE 6.1 Prevalence of self-reported eating dysfunction in surveys of elderly Americans Dysfunction Attributed to Oral Condition(s) Percentage of Population Group Reporting Dysfunction Elderly Persons in Californiaa Senior Center Residents Medicare Enrollees Had trouble biting or chewing 37 13 Limited the kinds of foods eaten 23 10 Unable to swallow comfortably 10 1 Elderly Persons in Floridab Mouth sometimes dry 39 Noticed an unpleasant taste in mouth 23 Unable to chew hard things 19 Experienced change in sense of taste 9 Difficulty tasting some foods 6 Noticed change in sense of smell 5 Elderly Persons in North Carolina< African Americans Whites Difficulty chewing any foods 18 6 Felt sense of taste had worsened 13 3 Uncomfortable eating foods 13 6 Had to avoid eating some foods 10 4 Felt digestion had worsened 8