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MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES

RESEARCH REVIEWS 12: 2840 (2006)

VISION

AND ORAL HEALTH NEEDS OF


INDIVIDUALS WITH INTELLECTUAL DISABILITY
Pamela L. Owens,1* Bonnie D. Kerker,2 Edward Zigler,3,4 and Sarah M. Horwitz4,5
1

Agency for Healthcare Research and Quality, Rockville, Maryland

New York City Department of Health and Mental Hygiene, New York, New York
3

Department of Psychology, Yale University, New Haven, Connecticut

Child Study Center, Yale University School of Medicine, New Haven, Connecticut

Department of Epidemiology and Biostatistics, Pediatrics and Psychiatry, Case Western Reserve University, Cleveland, Ohio

Over the past 20 years, there has been an increased emphasis on


health promotion, including prevention activities related to vision and oral
health, for the general population, but not for individuals with intellectual
disability (ID). This review explores what is known about the prevalence of
vision problems and oral health conditions among individuals with ID, presents a rationale for the increased prevalence of these conditions in the
context of service utilization, and examines the limitations of the available
research. Available data reveal a wide range of prevalence estimates for
vision problems and oral health conditions, but all suggest that these conditions are more prevalent among individuals with ID compared with the
general population, and disparities exist in the receipt of preventive and
early treatment for these conditions for individuals with ID. Recommendations for health improvement in these areas include better health planning
and monitoring through standardized population-based data collection and
reporting and increased emphasis on health promotion activities and early

2006 Wiley-Liss, Inc.


treatment in the healthcare system.
MRDD Research Reviews 2006;12:28 40.

Key Words: intellectual disability; dental; vision

ver the past 20 years there has been growing recognition of the importance of health promotion and prevention activities for an individuals overall quality of
life (e.g., U.S. Department of Health and Human Services
Ofce of Disease Prevention and Health Promotion Healthy
People Initiative, Agency for Healthcare Research and Qualitys
U.S. Preventive Services Task Force Initiative) [US DHHS,
2000a; Eisenberg and Kamerow, 2001; Woolf and Atkins,
2001]. Most of the emphasis and efforts to increase health
promotion activities have been focused on individuals in the
general population and not on individuals with specic conditions, such as intellectual disability (ID), who may require special
modications to understand and participate in health promotion
activities. For example, Healthy People 2010 noted the importance of good vision and oral health in the health improvement
plan for the general population. This document contains 29
objectives focused on the identication and treatment of visual
acuity, glaucoma, cataracts, dental caries, periodontal disease,
and oral and pharyngeal cancers [US DHHS, 2000a]. However,
Healthy People 2010 does not address the appropriateness of these
2006 Wiley-Liss, Inc. This article is a US Government work and, as such, is
in the public domain in the United States of America.

goals for individuals with ID or the difculties that this population has accessing and utilizing treatment.
To address this gap, Special Olympics, Inc. launched
Opening Eyes and Special Smiles programs to address eye and
dental care in conjunction with Special Olympics events [e.g.,
Shriver, 1998; Woods, 1999; Perlman, 2000; Corbin et al.,
2005]. Special Olympics, Inc. correctly noted that access to
dental and vision care was poor among individuals with ID.
They understood that good vision is an essential component of
most daily activities and impairments in vision can affect development, learning, communicating, working, and quality of life
in this population as well as the general population. Similarly,
Special Olympics, Inc. recognized that poor oral health can have
a dramatic effect on an individuals health and quality of life,
including difculties with eating, speech impediments, pain,
sleep disturbances, missed days of work or school, and decreased
self-esteem [e.g., Locker and Grushka, 1987; Hollister and
Weintraub, 1993; Broder et al., 1994; US DHHS, 2000c].
Special Olympics, Inc.s programs, however, can only
reach a limited population. In recognition of this, the Surgeon
Generals 2001 Conference on Health Disparities and Mental
Retardation focused a portion of the agenda on health promotion and disease prevention. Several recommendations to improve the health habits and health of persons with ID emanated
from the conference [US PHS, 2001].
This article furthers the conferences efforts, by exploring
what is known about the prevalence of vision problems and oral
health conditions among individuals with ID, presenting a rationale for the increased prevalence of these conditions in the
context of service utilization, and examining the limitations of
the available research. The article concludes with recommendations to improve the vision and oral health of individuals with
*Correspondence to: Pamela L. Owens, Center for Delivery, Organization, and
Markets, Agency for Healthcare Research and Quality, 540 Gaither Road, Rockville,
MD 20850. E-mail: powens@ahrq.gov
Received 2 November 2005; Accepted 11 November 2005
Published online in Wiley InterScience (www.interscience.wiley.com).
DOI: 10.1002/mrdd.20096

ID and provides some suggestions to


strengthen vision and oral health research
for individuals with ID.

sidered for inclusion, only 170 articles


were directly pertinent and detailed
enough to be admitted to this review.

METHODS
This article originated from a review of the research literature commissioned by Special Olympic, Inc. entitled
The Health Status and Needs of Individuals
with Mental Retardation [Horwitz et al.,
2000]. Since the report was completed in
2000, the authors replicated and updated
this literature review for this paper. Medline and PsychInfo (1980 2005) were
searched for peer-reviewed articles and
book chapters on the vision and oral
health status of and service accessibility
for individuals with ID (alternatively
termed mental retardation). Relevant
articles referenced in these peer-reviewed
articles and book chapters were obtained.
In addition, government documents,
identied through GPO Access and the
Internet, and publications and reports
obtained from state, national, and international organizations (e.g., Montana
Disability and Health Program, American Association for Mental Retardation,
The Arc of the United States, Center for
Disease Control and Prevention Center
for Birth Defects and Developmental
Disabilities, and the International Association for the Scientic Study of the Intellectual Disabilities) were included in
the paper. Further, for the original report, individuals from several federal
agencies (including the Centers for
Disease Control and Prevention, the National Council on Disability, the Presidents Committee on Mental Retardation, the U.S. Bureau of Census, and the
U.S. Department of Health and Human
Services) were contacted and interviewed. These interviews were not replicated for this paper.
All vision and oral health articles
related to individuals with ID (or mental
retardation) and those related to individuals with Down syndrome were eligible
for this review. Studies that referred to
more general developmental disabilities
(i.e., those that did not focus on ID or
provide specic information about individuals with ID) and case studies were
excluded. Although the initial intent of
the review was to focus on U.S. studies,
few U.S. population-based studies related
to the health of individuals with ID exist.
Thus, the review was expanded to include all articles written in English related
to the vision and oral health status, needs,
and service use of individuals with ID.
Studies from Canada, Europe, Australia,
Asia, and South America were admitted
to the review. Of the 500 articles con-

REVIEW OF THE LITERATURE


Prevalence of Vision Problems
Overall prevalence
Available data suggest that vision
problems (e.g., refractive errors, strabismus, cataracts, keratoconus) are more
common among individuals with ID
than those without ID [Levy, 1984;
Maino et al., 1996; Kapell et al., 1998;
Carvill, 2001; Warburg, 2001a]. While
75% of children in the general U.S. population are reported to be opthalmologically normal, only 28% of children
with ID have been so categorized [Lawson and Schoofs, 1971]. A similar, if not
more striking pattern can be seen among
adults. For example, while 5% of those

Available data suggest


that vision problems
(e.g., refractive errors,
strabismus, cataracts,
keratoconus) are more
common among
individuals with ID than
those without ID.
between the ages of 45 and 64 years and
7% of those over 65 years in the general
U.S. population have been reported to
have vision problems, Kapell et al.
[1998], studying New York residents,
found that 9 to 16% of 45 to 64 year olds
with ID and 17 to 50% of 65 to 74 year
olds with ID had vision problems. Other
studies have reported that 18 to 99% of
50 year olds with ID have vision problems [Day, 1987, Moss, 1991; Evenhuis,
1995; van Schrojenstein Lantman-de
Valk et al., 1997; Janicki and Dalton,
1998; Evenhuis et al., 2001b; Warburg,
2001b; Janicki et al., 2002; Kerr et al.,
2003; van Splunder et al., 2003a, 2004].
The most common cause of decreased vision in individuals with ID is
refractive errors, including hyperopia
(farsightedness), myopia (nearsightedness), and astigmatism [Maino et al.,
1996] (Table 1). While 4 to 25% of the
U.S. general population has a refractive

MRDD RESEARCH REVIEWS DOI 10.1002/mrdd

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AND

error, 27 to 52% of individuals with ID in


the United States and Canada have been
reported to require correction of refractive anomalies [Lawson and Schoofs,
1971; Markovits, 1975, Jaeger, 1980;
Sperduto et al., 1983; Kleinstein, 1984;
Levy 1984; Sacks et al., 1991; Maino et
al., 1996; Zadnik, 1997; US DHHS,
2000b; Friedman et al., 2002; Congdon
et al., 2003; The Eye Diseases, 2004a;
USPSTF, 2004b].
Similarly, British research of administrative data from hospitalized or institutionalized individuals with ID found
23 to 30% of those individuals to have
refractive errors [Day, 1987; Aitchison et
al., 1990; McCulloch et al., 1996]. An
administrative study in Japan reported the
prevalence of such impairments to be
even higher in which more than 80% of
children with ID had refractive errors
[Kuroda and Adachi-Usami, 1987]. International research on specic subpopulations of those with ID, however, has
found slightly lower prevalence estimates
of those with refractive errors. For example, a Swedish study of institutionalized
individuals with ID reported that 23%
had a considerable refractive error in the
best eye, and a Hong Kong study found
24% of individuals with profound ID [intelligence quotient (IQ) 25] had refractive errors [Jacobson, 1988; Kwok et
al., 1996].
In addition, research has examined
the prevalence of specic types of refractive errors. Woodruff et al. [1980] found
the prevalence of astigmatism among institutionalized Canadian individuals with
ID to exceed 30%. Levy [1984] found
higher percentages of hyperopia/astigmatism than myopia/astigmatism among
Canadian adults with ID (23 and 13%,
respectively). In contrast to most Western studies indicating that hyperopia is
more prevalent than myopia among individuals with ID, Kwok et al. [1996]
found myopic and hypermetropic astigmatisms to be equally prevalent in Hong
Kong.
Strabismus (the inability of both
eyes to xate on a target simultaneously
because of ocular muscle imbalance) has
been attributed to uncorrected refractive
errors [Woodruff, 1977]. Similar to other
vision problems, the prevalence of strabismus among individuals with ID exceeds that of the general population
(Table 1). While the prevalence of strabismus in the U.S. population has been
found to range from 3 to 8%, the prevalence ranges from 16 to 27% among
U.S. individuals with ID [Markovits,
1975; Jaeger, 1980; NCHS, 1983; Sacks
et al., 1991; Maino et al., 1996; Block et

ORAL HEALTH CONDITIONS

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ET AL.

29

Table 1.

Summary of Prevalence Estimates of Specic Vision Problems


Individuals with IDa

General Population

Children
(%)

Adults (%)

Severity of ID

Special Populations with ID

Children
(%)

Mild/
Moderate
(%)

Special Olympic
Athlete (%)

Condition

Adults (%)

Refractive errorsb
United States
References
International
References

425

224

2739

4352

9,17,45, 46,48

26,45,48,49,60

23,34,43

31,35

Severe/
Profound
(%)

Down Syndrome
(%)

57

2662

2170

19

7,8,23,42,44

655

325

1662

5280

2763

2457

1745

1375

22,32,46,52,53,56,57

30,55

1,15,21,22,32,

3,28,58

37,53

29,37,53

56,57

1,4,12,14,18,20,21,33,

36,5154,59

Strabismus
(squints)
United States
References
International
References

37,38,40,50,53,55

38

25

1627

57

5,39

39

23,34,43

35

110

6,32,52,53,56

2032

1925

2757

2,19

5,11

7,8,10,13,19,23,4244

12

445

2140

1643

1960

1934

969

33

1,21,22,32,36,

3,58

36,37,53,59

36,37,53,59

11,56,57

1,4,12,14,21,33,37,38,

52,53,59

Cataracts
United States
References
International
References

40,41,50,53,55

158d

.1

715

12

9,17,23,27,39,47

39

23,43

31,35

117

16,27

21

578

19

11

7,8,10,13,19,23,42,44

369

17

21

533

565

1,15,21,22,25,

53

53

11,56,57

1,4,8,14,21,33,37,38,

32,36,53,54

Keratoconus
United States
References
International
References

40,41,50,53

119

53

53

56

24

315
8,13,23,44

53

21,22,32,36,53,54

130

4,8,21,22,33,37,41,50,53

ID, mental retardation.


Primarily includes hyperopia (farsightedness) and myopia (nearsightedness), but sometimes also includes astigmatism.
No related study was available.
d
Prevalence estimates of cataracts increase to 50% among adults age 80 years and older, overall population estimates are 20%.
1
Aitchison et al., 1990, 2Amos, 1977, 3Bankes, 1974, 4Berk et al., 1996, 5Block et al., 1997, 6Buch et al., 2001, 7Caputo et al., 1989, 8Catalano, 1990, 9Congdon et al., 2003, 10Cooley and Graham, 1991, 11Corbin
et al., 2005, 12Cregg et al., 2003, 13Cullen and Butler, 1963 , 14da Cunha and Moreira, 1996, 15Evenhuis, 1995, 16Foran et al., 2003, 17Friedman et al., 2002, 18Gardiner, 1967, 19Gormezano and Kaminski, 2005,
20
Haugen et al., 2001, 21Hestnes et al., 1991, 22Jacobson, 1988, 23Jaeger, 1980, 24Kennedy et al., 1986, 25Kerr et al., 2003, 26Kleinstein, 1984, 27Kleinstein et al., 2003, 28Kuroda and Adachi-Usami, 1987, 29Kwok
et al., 1996, 30Larsson et al., 2003, 31Lawson and Schoofs, 1971, 32Levy, 1984, 33Lyle et al., 1972, 34Maino et al., 1996, 35Markovits, 1975, 36McCulloch et al., 1996, 37Merrick and Koslowe, 2001, 38Murphy et
al., 2005, 39NCHS, 1983, 40Perez-Carpinell et al., 1994, 41Prasher, 1994, 42Roizen et al., 1994, 43Sacks et al., 1991, 44Shapiro and France, 1985, 45Sperduto et al., 1983, 46Eye Diseases, 2004a, 47Eye Diseases, 2004b,
48
US DHHS, 2000b, 49USPSTF, 2004b, 50van Allen et al., 1999, 51van Splunder et al., 2003a, 52van Splunder et al., 2003b, 53van Splunder et al., 2004, 54Warburg, 2001b, 55Woodhouse et al., 1997, 56Woodhouse
et al., 2003, 57Woodhouse et al., 2004, 58Woodruff, 1977, 59Woodruff et al., 1980, 60Zadnik, 1997
b
c

al., 1997]. Similarly, while the overall


population prevalence of strabismus outside the United States ranges from 1 to
10%, international researchers found the
prevalence of strabismus among individuals with ID to range from 4 to 45%
(Table 1) [Lyle et al., 1972; Bankes,
1974; Woodruff, 1977; Woodruff et al.,
1980; Levy, 1984; Jacobson, 1988; Aitchison et al., 1990; Hestnes et al., 1991;
McCulloch et al., 1996; Buch et al.,
2001; van Splunder et al., 2003a, 2003b,
2004; Woodhouse et al., 2003].
The prevalence of cataracts (opacity of the lens of the eye, the capsule, or
both) and keratoconus (swelling and scarring of the cornea) among individuals
with ID also has been reported to be
much higher than that in the general
population (Table 1) [Lawson and
Schoofs, 1971; Bankes, 1974; Markovits,
1975; Woodruff, 1977; Jaeger, 1980;
NCHS, 1983; Levy, 1984; Kennedy et
al., 1986; Day, 1987; Jacobson, 1988;
Aitchison et al., 1990; Hestnes et al.,
1991; Sacks et al., 1991; Evenhuis, 1995;
30

Maino et al., 1996; McCulloch et al.,


1996; Warburg, 2001b; Friedman et al.,
2002; Congdon et al., 2003; Foran et al.,
2003; Kerr et al., 2003; Kleinstein et al.,
2003; van Splunder et al., 2003b, 2004;
The Eye Diseases, 2004b]. For example,
while the percentage of lens anomaly reported for adults without ID has been
reported to be as low as 1% [Kleinstein,
1984], Sacks et al. [1991] found that 7%
of adults with ID working in an activity
center in the United States had cataracts.
British administrative data suggest prevalence estimates of cataracts as high as 28%
among individuals with ID [Kerr et al.,
2003], while a study of individuals with
ID 60 years of age and older found that
69% had cataracts [Evenhuis, 1995]. Similarly, prevalence estimates of keratoconus are higher among individuals with
ID compared to the general population
(1 to 19% versus 1%, respectively),
with the condition reported to be more
common among males than females with
ID [Levy, 1984; Kennedy et al., 1986;
Jacobson, 1988; Hestnes et al., 1991;

MRDD RESEARCH REVIEWS DOI 10.1002/mrdd

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AND

Maino et al., 1996; McCulloch et al.,


1996; Warburg, 2001b; van Splunder et
al., 2004]. These high prevalence estimates among individuals with ID may be
due, in part, to the association between
cataracts, keratoconus, and Down syndrome, as discussed below.
Severity of ID has been found to
be associated with the prevalence of vision problems, with more individuals
with severe ID having vision problems
than those with mild or moderate ID
(Table 1). Woodruff et al. [1980] found
higher percentages of astigmatism among
institutionalized Canadian individuals
with severe ID than among those with
mild or moderate ID, but reported no
difference in corneal power between
these categories. Hirsch [1959] reported
that individuals with higher intelligence
tend to be more myopic, while those
with lower intelligence tend to be more
hyperopic [Manley and Schuldt, 1970].
In contrast, McCulloch et al. [1996] did
not nd a signicant trend between severity of disability and refractive error
ORAL HEALTH CONDITIONS

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ET AL.

among Scottish individuals with ID.


They did, however, nd a relationship
between severity of ID and visual acuity
(clearness or distinctness of vision).
While 88% of institutionalized individuals with mild intellectual disability had
good visual acuity, only 60% of those
with severe disability and none of those
with profound disability achieved this
level. Similarly, the prevalence of strabismus in this study ranged from 25%
among those with mild ID to 60%
among those with profound ID.
Vision problems among specic populations
Research on vision problems
among individuals with ID has focused
on two unique populations: Special
Olympic athletes and individuals with
Down syndrome. When the Special
Olympics population was studied at the
1995 International Summer Games, the
prevalence of overall vision problems
among athletes (29%) was comparable to
that found in institutions [Woodruff et
al., 1980; Block et al., 1997]. Specically,
27% of Special Olympic athletes suffered
from poor visual acuity, 62% had refractive errors in the range of 1.00 to 1.00
diopters, an additional 26% had more
severe refractive errors in the range of
17.25 to 9.50 diopters, 28% suffered
from astigmatism, and 18 to 20% had
strabismus [Block et al., 1997; Corbin et
al., 2005]. Similarly, Woodhouse et al.
[2004] found high prevalence estimates
of vision problems among athletes competing at the 2001 UK National Games
(40%) compared with the general population [Woodhouse et al., 2003], including moderate to high hypermetropia (17
versus 9%, respectively), clinically significant refractive errors (35 versus 15%,
respectively), and strabismus (23 versus 2
to 4%, respectively).
Individuals with Down syndrome
also have more vision problems than individuals in the general population. In a
recent survey of parents of adolescents
with Down syndrome conducted by the
National Association for Down syndrome, Roizen [2002] noted that vision
was identied by 48% of parents as a
current medical need of their child.
Gardiner [1967] found a higher prevalence of visual needs among children
with Down syndrome, with 70% having
poor visual acuity compared with 30% of
children with ID unrelated to Down syndrome. Gardiner [1967] also reported
that over 40% of children with Down
syndrome had refractive errors. In a study
of 44 children with Down syndrome,
Lyle et al. [1972] found that 6% of children had severe myopia, 26% had mod-

erate myopia, 10% had severe hyperopia,


and 58% had slight hyperopia. These
ndings suggest that reported prevalence
estimates vary by the denition used for
refractive errors and the techniques used
to identify refractive errors. More recently, Cregg et al. [2003] found that
refractive errors among infants with
Down syndrome increased with age from
infancy to 30 months, a pattern opposite
of that expected in early child development.
Refractive errors and visual anomalies among individuals with Down syndrome are not conned to childhood.
Several researchers have noted that individuals with Down syndrome are at a
particular risk for visual anomalies as they
age [Aitchison et al., 1990; Catalano,
1990; Prasher, 1994; Turner and Moss,
1996]. Among older adults, vision problems tend to occur at an earlier age

Like vision problems,


oral health problems
(dental caries, gingivitis,
and periodontal disease)
are among the top ten
secondary conditions
among individuals with
ID that cause limitations
in their daily activities.
among individuals with Down syndrome
than in the general population [Flax and
Luchterhand, 2005]. With increased longevity of individuals with Down syndrome, vision problems are of growing
concern [Aitchison et al., 1990].
Additionally, those with Down
syndrome are more likely to suffer from
strabismus, cataracts, and keratoconus
compared with individuals in the general
population and in the overall population
of individuals with ID (The comparison
group identied as the overall population of individuals with ID is intended
to represent those with ID of different
etiologies other than Down syndrome.
However, because many studies did not
specify the etiology of ID for the study
population or provide separate estimates
for those with and without Down syndrome, this comparison group includes
those with Down syndrome.) (Table 1)

MRDD RESEARCH REVIEWS DOI 10.1002/mrdd

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AND

[Maino et al., 1990; Pueschel, 1995;


Saenz, 1999; Smith, 2001]. The prevalence of strabismus has been reported to
range from 9 to 69% among individuals
with Down syndrome, compared with
1 to 10% in the general population and
4 to 45% in the overall population of
individuals with ID [Cullen and Butler,
1963; Lyle et al., 1972; Markovits, 1975;
Jaeger, 1980; Woodruff et al., 1980;
NCHS, 1983; Levy, 1984; Shapiro and
France, 1985; Jacobson, 1988; Caputo et
al., 1989; Aitchison et al., 1990; Catalano, 1990; Cooley and Graham, 1991;
Hestnes et al., 1991; Sacks et al., 1991;
Perez-Carpinell et al., 1994; Prasher,
1994; Roizen et al., 1994; Berk et al.,
1996; da Cunha and Moreira, 1996;
Maino et al., 1996; McCulloch et al.,
1996; Block et al., 1997; Woodhouse et
al., 1997, 2003; van Allen et al., 1999;
Buch et al., 2001; Merrick and Koslowe,
2001; Cregg et al., 2003; van Splunder et
al., 2003b, 2004; Gormezano and Kaminski, 2005; Murphy et al., 2005]. In
addition, the prevalence of cataracts,
which tends to increase with age in the
general population, increases to a greater
extent with age for individuals with
Down syndrome [Jacobson, 1988]. Prevalence estimates of cataracts among individuals with Down syndrome has been
found to range from 5 to 85% compared
with 1 to 58% in the general population
and 3 to 69% in the overall population of
individuals with ID [Cullen and Butler,
1963; Lyle et al., 1972; Jaeger, 1980;
NCHS, 1983; Levy, 1984; Shapiro and
France, 1985; Jacobson, 1988; Caputo et
al., 1989; Aitchison et al., 1990; Catalano, 1990; Cooley and Graham, 1991;
Hestnes et al., 1991; Sacks et al., 1991;
Perez-Carpinell et al., 1994; Prasher,
1994; Roizen et al., 1994; Evenhuis,
1995; Berk et al., 1996; da Cunha and
Moreira, 1996; McCulloch et al., 1996;
van Allen et al., 1999; Merrick and Koslowe, 2001; Warburg, 2001b; Friedman
et al., 2002; Congdon et al., 2003; Kerr
et al., 2003; Kleinstein et al., 2003; The
Eye Diseases, 2004b; van Splunder et al.,
2004; Gormezano and Kaminski, 2005;
Murphy et al., 2005]. Likewise, the prevalence of keratoconus has been reported
to be between 3 and 30% among individuals with Down syndrome compared
with 1% in the general population and
1 to 19% in the overall population of
individuals with ID [Cullen and Butler,
1963; Lyle et al., 1972; Jaeger, 1980;
Levy, 1984; Shapiro and France, 1985;
Kennedy et al., 1986; Jacobson, 1988;
Catalano, 1990; Hestnes et al., 1991;
Prasher, 1994; Berk et al., 1996; Maino
et al., 1996; McCulloch et al., 1996; van

ORAL HEALTH CONDITIONS

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ET AL.

31

Table 2.

Summary of Prevalence Estimates of Specic Oral Health Problems

General Population

Condition
Dental caries
United States
References
International
References
Untreated dental caries
United States
References
International
References
Mean number of decayed teeth
United States
References
International
References

Individuals with IDa

Severity of ID

Children
(%)

Mild/
Moderate
(%)

Special Populations with ID


Severe/
Profound
(%)

Down
Syndrome
(%)

Adults
(%)

Children
(%)

85

1861

96

6394

4284

441

5456

4296

36

16,36,37

3,4,11

1,3

Adults (%)

3855

2071

8293

3296

84

79

14,33

2,7,17,31

7,30

7,19,20,28,31

10

10

2030

1629

55

21,29,36

8,21,36,41

55

33

1858

6384

20

6,15,16

20

.4.7

1.71.8

.82.8

2.85.3

.25.9

44

22

4,22

4,26

4,26

0.13.2

.39.7

.22.0

44

6,15,16,25,27,

19,31

35
5

.4.8
1.03.3

1131
5,8,24,29,41

44

44

2092
2,32

11

14

Special Olympic
Athlete (%)

.61.6
22

4.59.7
25,32,38

35,38,42

Mean number of missing teeth


United States
References
International
References
Mean number of lled
teeth
United States
References
International
References
Gingivitisd
United States
References
International
References

016.1

0.1

6.47.9

.62.5

.9

.6

1534c

3.324.6

44

44

22

4,22

5,8,24,29,41

22

.3.7

.323.8

0.4

1.523.1

44

44

6,11,15,16,25,27,35,38,19,31 19,31

2.25.6

3.4

39

.41.5

9,30

32,38

3.88.4

01.2

2.75.5

.72.6

.52.1

0.4

5384

1.51.7

44

44

22

22

8,40

22

.515.5

.11.9

.48.7

.51.3

5.510.7

44

44

25,27,35,38,42

19,31

30

4248

635

8,36

3,11

32,38

.51.1

3368

5,8,24,29,41

859

348

4475

2597

3349

2980

54

1097

18,33

12,17

6,16,42

20,39,40

23

23,34

12,18,39

ID, intellectual disability.


No related studies were available.
Studies on Special Olympic athletes provide prevalence estimates of the number of athletes with missing or lled teeth but do not provide the mean number of decayed, missing, lled teeth.
d
Many U.S. studies use Oral Health Index (OHI) scores or similar indices that do not readily convert to prevalence estimates.
1
Barnett et al., 1986; 2Bradley and McAlister, 2004; 3Brown and Schodel, 1976; 4Butts, 1967; 5Corbin et al., 2005; 6Cumella et al., 2000; 7Donnell et al., 2002; 8Feldman et al., 1997; 9Gabre and Gahnberg, 1997;
10
Gizani et al., 1997; 11Guillikson, 1969; 12Hennequin et al., 2000; 13Kaste et al., 1996; 14Kelly et al., 2000; 15Kendall, 1992; 16Kendall, 1991; 17Lader et al., 2005; 18Lopez-Perez et al., 2002; 19Mitsea et al., 2001;
20
Murray and McLeod, 1973; 21NCHS, 2004; 22Nowak, 1984; 23Palin et al., 1982; 24Pezzementi and Fisher, 2005; 25Pieper et al., 1986; 26Pollack and Shapiro, 1971; 27Pregliasco et al., 2001; 28Rao et al., 2001;
29
Reid et al., 2003; 30Shapira et al., 1998; 31Shaw et al., 1986; 32Shyama et al., 2001; 33Stoyanova, 2003; 34Sturmey and Hinds, 1983; 35Svatun and Heloe, 1975; 36US DHHS, 2000c; 37USPSTF, 2004a; 38Vazquez
et al., 2002; 39Vigild, 1985; 40Vignehsa et al., 1991; 41White et al., 1998; 42Whyman et al., 1995; 43Winn et al. 1996; 44WHO, 2005.
b
c

Allen et al., 1999; Warburg, 2001b; van


Splunder et al., 2003a, 2004; Murphy et
al., 2005].
Prevalence of Oral Health
Conditions
Overall prevalence
Like vision problems, oral health
problems (dental caries, gingivitis, and
periodontal disease) are among the top
ten secondary conditions among individuals with ID that cause limitations in
their daily activities [Traci et al., 2002].
According to a recent pilot study of consumers of Montana Developmental Disability services (80% of whom had ID),
Traci et al. [2002] found that the estimated prevalence rate of oral hygiene
problems was 451 per 1,000 individuals
32

with developmental disabilities. Similar


to the general population, one of the
most common oral health problems of
children and adults with ID is dental caries (Table 2). National and international
studies, however, do not provide denitive evidence on the prevalence of dental
caries among those with ID relative to
the general population [Haavio, 1995;
Shapira et al., 1998; Waldman et al.,
1998]. In fact, most studies that focus on
dental caries discuss the overall percentage or overall mean number of decayed,
missing, and lled teeth, and do not report the prevalence of individuals with ID
who have dental caries.
Studies examining the number of
decayed, missing, and lled teeth
among individuals with ID compared
with the general population are incon-

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clusive [Tesini, 1981]. A few studies


have shown higher prevalence estimates of decayed, missing, and lled
teeth among individuals with ID compared to the general population [Pieper
et al., 1986; Shyama et al., 2001].
Other researchers have found lower
prevalence estimates of decayed, missing, and lled teeth among individuals
with ID [Butts, 1967; Svatun and Heloe, 1975; Tesini, 1981; Forsberg et al.,
1985; Kendall, 1991; Gabre and Gahnberg, 1994; Vazquez et al., 2002]. Although some of these studies focused
on individuals with Down syndrome
[Vazquez et al., 2002] or those living in
the community [Kendall, 1991], the
majority of these studies focused on
individuals living in institutions or
those with severe or profound ID
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[Butts, 1967; Svatun and Heloe, 1975;


Tesini, 1981; Forsberg et al., 1985;
Gabre and Gahnberg, 1994; Vazquez et
al., 2002]. Butts [1967], for example,
found that children with severe ID living in institutions had fewer decayed,
missing, and lled teeth than children
with mild or moderate ID. Forsberg et
al. [1985] found that children with severe ID living in institutions had fewer
decayed, missing, and lled teeth compared with children with severe ID not
living institutions or those in the general population. The latter two comparison groups in the Forsberg study
had similar numbers of decayed, missing, and lled teeth. The low prevalence of decayed, missing, and lled
teeth found among those with severe
ID living in institutions relative to the
general population, those with mild
and moderate ID, and those with severe ID not living in institutions may
result from the prior removal of decayed teeth and/or the low sugar diet
served in institutions [Tesini, 1981;
Forsberg et al., 1985; Vazquez et al.,
2002]. The majority of studies, however, have found similar prevalence estimates of decayed, missing, and lled
teeth among individuals with ID compared to those in the general population, even though these studies included individuals living in all types of
environments and with varying levels
of ID [e.g., Tesini, 1981; Nowak,
1984; Shaw et al., 1986; Costello,
1990; Whyman et al., 1995; Cumella et
al., 2000].
An alternative method of examining the extent of dental caries in the
population focuses on the proportion of
individuals with at least one dental carie.
Similar to studies focused on decayed,
missing, and lled teeth, the few studies
that have focused on the prevalence of
individuals with ID who have dental caries show inconclusive results in comparison to the general population. Some of
these studies suggest a higher prevalence
of individuals with ID who have dental
caries, some suggest a lower prevalence,
and some studies report prevalence estimates consistent with the general population [Butts, 1967; Brown and Schodel,
1976; Shaw et al., 1986; Feldman et al.,
1997; Gizani et al., 1997; Shapira et al.,
1998; Rao et al., 2001; Bradley and
McAlister, 2004].
Regardless of the method of dening dental caries or the relative prevalence of dental caries among individuals
with ID to those in the general population, the majority of studies report higher
prevalence estimates of adults and chil-

dren with ID who have untreated or poorly


treated caries compared with the general
population (Table 2). Several researchers
have found that 18 to 84% of children
and adults with ID have untreated caries
compared with 16 to 55% in the general
population [Guillikson, 1969; Murray
and McLeod, 1973; Kendall, 1991, 1992;
Cumella et al., 2000]. Others have found
evidence that individuals with ID were
more likely to receive poor treatment for
dental caries, such as tooth extractions
rather than restorations for dental problems, compared with individuals in the
general population [Butts, 1967; Svatun
and Heloe, 1975; Nowak, 1984; Shaw et
al., 1986; Whyman et al., 1995; Shapira
et al., 1998; Pregliasco et al., 2001;
Vazquez et al., 2002]. Nowak [1984], for
example, examined the oral health of
3,622 disabled individuals aged 0 16
years living in the community. Based on
examinations by dental hygienists, they
found that there was little difference in
the number of teeth with dental caries
(average of 6 or 7 teeth) among individuals with Down syndrome, individuals
with other etiologies of ID, and individuals in the general population. The proportion of missing teeth to lled teeth,
however, was much higher among individuals with ID compared with the general population.
Another common oral health
problem among children and adults with
ID is gingivitis. Studies on the oral health
of individuals with ID, conducted in
communities in the United States and
internationally, report prevalence estimates of gingivitis in the range of 6 to
97% among individuals with ID compared with estimates of 8 to 59% in the
general population [Guillikson, 1969;
Murray and McLeod, 1973; Brown and
Schodel, 1976; Vigild, 1985; Kendall,
1991; Vignehsa et al., 1991; Whyman et
al., 1995; Feldman et al., 1997; Cumella
et al., 2000; Hennequin et al., 2000; US
DHHS, 2000c; Lopez-Perez et al., 2002;
Stoyanova, 2003; Lader et al., 2005].
Those who are older and those living in
institutions tend to have higher prevalence estimates of gingivitis [Murray and
McLeod, 1973; Svatun and Gjermo,
1977; Tesini, 1981; Vigild, 1985; Kendall, 1991]. Shapira et al. [1998] suggested that the increased prevalence of
gingivitis among institutionalized individuals may be related to the mouth dryness associated with certain medications
commonly used among individuals with
ID living in such settings. Increased prevalence also may be related to the increased surveillance of gingivitis and poor

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oral hygiene among individuals living in


institutions.
Oral health conditions among specic
populations
Similar to the research on vision
problems, research on oral health has focused on Special Olympics athletes and
individuals with Down syndrome. Several studies have reported the prevalence
of oral health screenings at Special Olympics events [Feldman et al., 1997; White
et al., 1998; Reid et al., 2003; Corbin et
al., 2005; Pezzementi and Fisher, 2005].
Feldman et al. [1997], for example, documented the results of a screening program of Special Olympic athletes who
participated in the New Jersey Special
Olympic Games in 1996. They found
that 6- to 8-year-old children with ID
had similar patterns of dental caries as
children of the same age in the general
population (56 versus 53%, respectively).
Adolescent athletes 15 years and over,
however, were less likely to have dental
caries than adolescents in the general
population (54 versus 78%, respectively).
Further, there appeared to be no difference between athletes aged 35 to 44 years
and individuals of the same age in the
general population who had tooth loss
due to periodontal disease or dental caries
(62 versus 69%, respectively). In contrast,
athletes aged 65 years and older were
more likely to have lost all of their natural
teeth compared with their peers without
ID (50 versus 36%, respectively). Additional data from athletes who participated
in Special Olympic Games in the United
States from 2001 to 2002 suggest that the
overall prevalence of untreated dental decay among Special Olympic athletes
ranges from 28 to 31%, which is higher
than the prevalence estimates in the U.S.
general population (20 to 30%) [US
DHHS, 2000c; Reid et al., 2003;
NCHS, 2004; Pezzementi and Fisher,
2005].
The prevalence of gingivitis among
Special Olympic athletes has been documented to be slightly higher than that in
the general population. Data from the
1996 New Jersey Special Olympic
Games suggested that 68% of athletes
aged 35 44 years had gingivitis compared with 42% in the general population
[Feldman et al., 1997]. More recently,
using data from the 2003 World Summer
Games in Ireland, Corbin et al. [2005]
found the prevalence of gingivitis to vary
with age (approximately 42% among 8to 17-year-old athletes, 58% among 18to 34-year-old athletes, 62% among 35to 50-year-old athletes and 48% among
51- to 70-year old athletes) and nation-

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33

ality (approximately 42% among U.S.


athletes and 55% among European and
Eurasian athletes). In sum, Special Olympic athletes, especially older athletes,
tended to have higher prevalence estimates of untreated or poorly treated caries and gingivitis compared with the general population.
Individuals with Down syndrome
are more likely to have poorly treated
caries, gingivitis, and other periodontal
diseases than the general population and
the overall population of individuals with
ID (Table 2) [Pueschel, 1995; Saenz,
1999; Smith, 2001]. In fact, Rozien
[2002] suggested that 33% of surveyed
parents of adolescents with Down syndrome suggested that their child had a
need for dental care. In a review of oral
health conditions among individuals with
Down syndrome, Brown and Schodel
[1976] noted that estimates of individuals
with dental caries ranged from 42 to
88%. Among individuals with Down
syndrome, the mean number of decayed
(1.25.0) or missing (0.6 24.6) teeth is
greater than the mean number of lled
(0.51.5) teeth, compared with 1.0 3.3,
0 23.8, and 0.515.5, respectively, in
the general population and 0.29.7, 0.3
23.1, and 0.4 8.7, respectively, in the
overall population of individuals with ID
[Butts, 1967; Svatun and Heloe, 1975;
Nowak, 1984; Pieper et al., 1986; Shaw
et al., 1986; Kendall, 1991, 1992; Whyman et al., 1995; Cumella et al., 2000;
Mitsea et al., 2001; Pregliasco et al. 2001;
Shyama et al., 2001; Vazquez et al., 2002;
World Health Organization (WHO),
2005].
Explanations for Reported
Prevalence of Conditions and
Increased Need for Services
Although the general population
has visual and oral health needs, the subpopulation of individuals with ID has
even greater needs in these areas. These
greater needs may be related to etiology,
health behaviors, or lack of access to appropriate treatment.
Etiology
Part of the increased prevalence of
vision problems among individuals with
ID may result from the proportion of
aging people with intellectual disabilities,
which has increased due to medical and
social advances [Flax and Luchterhand,
2005]. As detailed above, a higher prevalence of older individuals with ID, including those with Down syndrome, report vision problems than individuals of
the same age in the general population
[Evenhuis, 1995; Janicki and Dalton,
34

1998]. This phenomenon may be related,


in part, to the accelerated aging process
seen in individuals with Down syndrome
[Maino et al., 1990; Devenny et al.,
1996].
In addition, the high prevalence of
vision problems among individuals with
organic ID may be due to the condition
that caused the ID, which may actually
restrict ocular growth [Woodruff et al.,
1980]. According to Gardiner [1967],
most eye anomalies among individuals
with Down syndrome are due to a lack of
coordination of the eye during its
growth. Further, as mentioned above,
Down syndrome is often associated with
cataracts, which can cause visual loss
[Evehuis et al., 1997]. In other cases,
particularly for those with severe ID living in institutions, vision problems may
result from long-term medication use
which can result in visual side effects
[Woodruff et al., 1980; Bartlett, 1987;
Maino et al., 1996]. Overuse of medica-

Although the general


population has visual
and oral health needs,
the subpopulation of
individuals with ID has
even greater needs in
these areas.
tion in institutions may account for the
higher prevalence of individuals with severe ID who have vision problems compared with individuals with mild or moderate ID who live in the community
[Woodruff et al., 1980].
Part of the increased prevalence of
individuals with Down syndrome who
have gingivitis may be related to altered
levels of subgingival microorganisms and
underlying abnormal immunologic responses [Barr-Agholme et al., 1992; Nespoli et al., 1993; Yavuzyilmaz et al.,
1993; Beck et al., 1996; Amano et al.,
2000; Reuland-Bosma et al., 2001; Roizen, 2002; Mouradian and Corbin, 2003;
Lee et al., 2004; Sakellari et al., 2005].
For example, in a study of 120 children,
Amano et al. [2000] found that children
with Down syndrome were more likely
to have oral pathogens (or microorganisms capable of causing disease) associated
with gingivitis compared with children
without ID. Other researchers have sug-

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gested that individuals with ID have decreased levels of microora that prevent
the development of gingivitis [Yavuzyilmaz et al., 1993].
Health Behaviors
Unlike the explanation for vision
problems, explanations for the prevalence of oral health conditions are more
frequently related to the self-care skills
and behavior of the individual. The increased prevalence of oral health problems among individuals with ID may be
related to their oral health habits [Tesini,
1981; Vazquez et al., 2002]. The oral
hygiene among individuals with ID has
been shown to be consistently poor compared with individuals in the general
population [White et al., 1998; Reid et
al., 2003; Corbin et al., 2005]. Among
individuals with ID, those with moderate
or severe ID have been found to brush
their teeth more regularly than those
with mild ID [Gizani et al. 1997]. Those
with moderate or severe ID, however,
often have impaired physical coordination and cognitive sequencing skills that
limit independence in task completion
[Sturmey and Hinds, 1983]. Consequently, they generally need assistance
from caregivers to complete oral hygiene
tasks [Mouradian and Corbin, 2003].
More recent research has demonstrated
the benets of electric toothbrushes and
oral training programs for individuals
with ID [Randell et al., 1992; Shapira
and Stabholz, 1996; Faulks and Hennequin, 2000; Lange et al., 2000; Altabet et
al., 2003; Shyama et al., 2003; Bainbridge
et al., 2004; Dogan et al., 2004].
Studies of oral health behavior also
have been completed among athletes participating in Special Olympics Games
[White et al., 1998; Reid et al., 2003;
Corbin et al., 2005]. White et al. [1998]
documented the results of a study of selfreported oral health habits of participants
in the 1997 San Francisco Bay Area Special Olympics Special Smiles program.
They found that 72% of athletes reported
brushing their teeth at least once per day,
27% reported brushing their teeth two to
six times per week, and 1% reported
brushing their teeth once per week. Estimates varied by age of participants.
Younger athletes (9 to 20 year olds) were
more likely to report brushing their teeth
two to six times per week, while older
athletes (21 to 49 year olds) were more
likely to report brushing their teeth once
per day. Reid et al. [2003] and Corbin et
al. [2005] reported a higher prevalence of
brushing (over 80%), with decreased frequency of performing oral hygiene tasks
with increased age (from approximately
ORAL HEALTH CONDITIONS

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89% among 8 to 17 year olds to 65%


among 51 to 70 year olds). Even among
this relatively high functioning population of individuals with ID, in which
overreporting of positive health behaviors is expected, nearly one-fth did not
maintain oral hygiene habits on a daily
basis, providing evidence for the importance of instruction and reinforcement of
daily oral hygiene among individuals
with ID [Waldman et al., 2000].
Access to Appropriate Treatment
Vision problems and oral health
conditions may occur over time due to
barriers in the healthcare system that result in inadequate detection and treatment [Lennox and Kerr, 1997; Lennox et
al., 1997; Evenhuis et al., 2001a]. Despite
the clear benets of early and frequent
visual and oral assessments [e.g., Yoshihara et al., 2005], research shows that
individuals with ID receive less appropriate vision and dental services than those
without ID [Levy, 1984; Haavio, 1995].
For example, Corbin et al. [2005] found
that 30% of athletes had never had an eye
exam, and 14% had not had their last eye
exam within the three previous years in a
Special Olympics Opening Eyes screening program at the 2003 Special Olympic
World Summer Games. A study of Scottish hospitals indicated that 56% of patients with disabilities had no record of
any past eye examination, and a disproportionate number of those who did
have eye exams had only mild or moderate disabilities [McCulloch et al.,
1996]. In addition, a few studies have
examined the prevalence of individuals
with ID that seek dental care, although
these studies focused only on participants
of Special Olympics or on international
populations. Feldman et al. [1997], for
example, documented that 70% of Special Olympic athletes with ID used dental
care services within the previous year
compared with 65 to 73% in the U.S.
population [NCHS, 2004]. The higher
prevalence of care among athletes with
ID may not be representative of the
larger population of individuals with ID,
because one of the primary goals of Special Olympics Special Smiles is to raise
awareness of dental care needs and encourage athletes to seek dental care. No
studies were found that examined the
dental service use of individuals with ID
in the United States, despite several studies noting barriers to dental care [e.g.,
Glassman and Miller, 2003].
Even for those individuals with ID
who do access care, the quality of health
services received may not be optimal.
The detection and the treatment of visual

anomalies are often inadequate among


individuals with ID. This is particularly
important because many visual decits
are correctable. Woodruff et al. [1980]
found that 49% of institutionalized individuals with ID had a correctable spherical refractive error, and 37% had a
correctable astigmatism. Even among individuals who receive correction, the
prescription may not be adequate. McCulloch et al. [1996], for example, found
that 38% of Scottish hospital patients
with disabilities did not have appropriate
correction of refractive errors. Early diagnosis and frequent assessments and intervention can prevent the long-term effects of uncorrected visual anomalies
[Woodruff, 1977, 1980; Bartlett, 1987].
Additionally, individuals with ID
do not receive adequate restorative or
preventive dental care, despite the ndings that they have poor oral health. As
noted previously, several researchers have
reported that individuals with ID get less
restorative care (i.e., more extractions
than llings for decayed teeth) than individuals in the general population [Murray
and McLeod, 1973; Nowak, 1984;
Costello, 1990; Shaw et al., 1986; Gizani
et al., 1997; Cumella et al., 2000]. Preventive measures, such as dental sealants
to prevent dental decay, also are less frequently used with individuals with ID,
despite their effectiveness among these
individuals [Richardson et al., 1981].
Recognizing the importance of this measure of preventive dental care in the general population, the U.S. Surgeon General set a target of 50% of school children
to receive dental sealants by the year
2000. To date, 23% of 8-year-old children in the United States have received
dental sealants [US DHHS, 2000c].
Fewer 8-year-old children with ID who
participated in Special Olympics (an
event in which the majority of athletes
have seen a dentist in the past year) have
received such preventive care [Feldman
et al., 1997; Reid et al., 2003]. Feldman
et al. [1997] found that 14% of 1996
New Jersey Special Olympic athletes
aged 8 years old had received a protective
sealant. Similarly, data from 40 Special
Olympic Games held in 2001 indicate
that only 16% of Special Olympic athletes in the United States (including both
adults and children) have dental sealants
[Reid et al., 2003]. No studies were
found that examined baseline estimates of
dental sealants in the overall population
of individuals with ID.
Limitations of Available Research
The ndings from this review must
be interpreted with caution. The wide

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range of prevalence estimates of individuals with ID who have vision problems


and oral health conditions may be related
to limitations in the availability of data
and the scientic rigor of the research.
First, most domestic studies of visual deficits and oral health conditions are conducted with small sample sizes and use
medical records from hospitals or clinics
or focus on a selected population of individuals with ID who are more active in
the community (e.g., Special Olympic
athletes). Thus, the studies may not include data from those with the highest
visual and oral health needs. Estimates of
studies using administrative data must be
interpreted carefully, as they are often
reported as percentages of individuals
seeking services or living in institutions,
not of those in the general population
who have ID.
Second, only international studies
used population-based data that consist of
large samples that aim to represent the
entire population (similar data are not
available in the United States). Despite
their potential generalizability, however,
population-based data have limitations.
They can underestimate the true prevalence of vision problems and oral health
conditions if institutionalized individuals
are not included in the sample or if those
who seek services in the community are
not accurately identied. Furthermore,
the prevalence estimates in international
studies may not be reective of prevalence estimates in U.S. studies, particularly for those conditions that are ameliorated by individual behaviors and
appropriate medical care treatment, such
as dental caries and gingivitis.
Third, in addition to problems
with the data, the methodological rigor
with which some of these studies were
conducted is questionable. Many provide
little information on the measurement
and etiolog of ID or the severity level
among individuals. Studies vary in the
denitions, measurement, and documentation of the severity of specic vision
problems and oral health conditions. For
example, some studies use the term visual impairment to refer to the functional loss of vision that cannot be corrected to a normal level, some use the
term as a synonym for visual acuity, and
others use the term generically to describe any problem with vision. Variation
exists in the method by which conditions
are assessed (e.g., clinical examinations or
self- or caregiver report). In addition,
most studies are cross-sectional and provide only a snapshot in time. Comparisons of the results across studies can be
misleading, because prevalence estimates

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35

also may change across time. Moreover,


few studies have comparison groups and
even fewer provide statistical tests for
comparisons between groups of individuals. In addition, many studies do not
adjust for (or give information about)
factors that may inuence the prevalence
estimates, such as age, severity of ID,
living situation, dietary and lifestyle habits, medications, and medical diagnoses,
making comparisons and more sophisticated understanding across studies difcult [Vazquez et al., 2002].
SUMMARY AND IMPLICATIONS
Summary
Despite the limitations of existing
data, research indicates that individuals
with ID have more visual and oral health
needs that affect their quality of life than
those in the general population. The exact prevalence of visual decits among
individuals with ID varies, depending on
the population studied. The most common conditions among individuals with
ID, both in the United States and internationally, appear to be refractive errors
and strabismus, although the distribution
of hyperopia and myopia tends to vary
with the population studied. In addition,
individuals with severe ID tend to have
more visual anomalies than those with
mild ID. While these observations may
be due to the etiology of the ID, they
may also be due to the increased medication use associated with the institutionalization of individuals with severe ID.
Further, those with Down syndrome are
highly likely to have strabismus, cataracts,
and keratoconus, particularly as they age.
Identifying vision problems in
childhood is important because early correction can prevent further impairments
over time. Vision problems can limit the
range of experiences and information
available to a child and, thus, have a
signicant impact on a childs emotional,
neurological, and physical development
[Mervis et al., 2000]. This may be particularly important for children with ID.
Combined with their other impairments,
untreated or mistreated visual decits
may be a more devastating obstacle to
children with ID, who may rely greatly
on good functional vision, than to other
children, who may be better able to
compensate for vision problems in other
ways [Gardiner, 1965; Markovits, 1975;
Maino et al., 1996; Evenhuis and
Nagtzaam, 1997]. Correcting visual
anomalies can lead to both better functioning in society and educational and
social benets for children, adults, and
their families. Given this, it is crucial that
36

vision problems are identied early and,


when possible, corrected.
Similarly, the available data suggest
that the oral health of individuals with ID
is poorer than that of their peers without
ID. Although there are inconsistent ndings on the prevalence of dental caries
among individuals with ID compared
with the general population, the majority
of evidence suggests that proportionally
more individuals with ID have untreated
or poorly treated caries than those in the
general population. Given that treatment
of caries is a prevalent and accepted part
of good health behavior for much of the
world, this lack of appropriate treatment,
even in developed countries, suggests
problems in access to dental services.
Likewise, there is evidence that individuals with ID are likely to have a higher
prevalence of gingivitis and other periodontal diseases compared with the general population. The prevalence of these
oral health conditions among individuals
with ID, however, is dependent on age,
etiology of ID, and living situation.
Older individuals with ID are at higher
risk for poor oral health compared with
younger individuals with ID and those in
the general population. Further, individuals with Down syndrome are more
likely to have gingivitis compared with
individuals in the general population. Although increased surveillance may inuence the prevalence of disease detected,
individuals living in institutions are at
increased risk for gingivitis and other
periodontal diseases compared with individuals in the general population.
As in the general population, good
oral hygiene is essential to prevent oral
diseases among individuals with ID. Interestingly, those with mild ID appear to
have poorer oral hygiene compared with
those with moderate or severe ID, likely
due to the increased supervision of those
with more severe ID. This suggests that
efforts to improve the oral hygiene of
individuals with mild ID may be a particularly effective intervention.
Implications
To ensure that individuals with ID
have good vision and oral health and,
ultimately, to improve their quality of
life, health improvement goals based on
accurate prevalence estimates for individuals with ID are essential. Healthy People
2010 outlines a standard by which to
measure health improvements in the
general population; however, it overlooks individuals with ID [US DHHS,
2000a]. The baseline prevalence estimates in Healthy People 2010 do not include individuals with ID, and the na-

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tional databases used to derive estimates


of various conditions do not collect information specically from or about individuals with ID [US DHHS, 2000a].
Moreover, this review on vision problems and oral health conditions suggests
that, although the vision and oral health
goals outlined in Healthy People 2010
may not be appropriate for individuals
with ID, a focused public health initiative
that sets goals and ensures that appropriate vision and oral health interventions
are accessible to this population is critical
[US DHHS, 2000a].
To measure the effectiveness of
such a public health program and improve planning, accurate prevalence estimates of vision and oral health conditions
among individuals with ID are necessary.
As this review points out, prevalence estimates vary widely, suggesting that accurate prevalence estimates of vision and
oral health conditions among individuals
with ID are not currently available. To
improve the quality of these estimates,
the public health and research communities could work together to achieve
population-based data relevant to individuals with ID [Kerr et al., 2003;
Mouradian et al., 2004]. One potential
strategy may be the development of a
national database or national registry of
individuals with ID, which could include
individuals who live in institutional settings as well as in the community. Efforts
also could be made to rene the current
public health surveillance data systems
[e.g., National Health Interview Survey
(NHIS), Behavior Risk Factor Surveillance System (BRFSS), National Oral
Health Surveillance System] to survey
and collect information about individuals
with ID and their caregivers.
State agencies could be encouraged
to create periodic reports of the health
needs and services uses of individuals
with ID within their state. Through the
consolidated efforts of state and national
forums (e.g., National Association of
Health Data Organizations, Association
of State and Territorial Health Ofcials,
Public Health Data Standards Consortium), administrative data collection and
ultimately the prevalence estimates contained within the state-level reports
could be standardized. These estimates,
then, could be aggregated to the national
level and compared across time. Emphasis also could be placed on efforts to link
data currently available from various state
and federal agencies, such as data from
state departments of mental retardation
or health, birth records, special education
and vocation rehabilitation enrollment
ORAL HEALTH CONDITIONS

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ET AL.

les, and Medicaid and Supplemental Security Income (SSI) enrollment les.
Besides improving prevalence estimates, this report identies a high need
for individuals with ID to have access to
appropriate screenings and early interventions for vision and dental care. To
achieve access to quality vision and dental
care, improvements need to be made to
the healthcare system overall. Improvement strategies could include physician,
dentist, and nurse training in the management and treatment of patients with
ID through classroom education, clinical
experience, and continuing education
[US PHS, 2001; Fenton et al., 2003;
Hahn, 2003; Mouradian and Corbin,
2003; Casamassimo et al., 2004; Wolff et
al., 2004]. Training programs that emphasize prevention and health promotion
and early treatment options for individuals with ID may be particularly benecial [Mouradian et al., 2004]. Other im-

More attention needs to


be given to the vision
and dental needs of
individuals with ID,
through accurate and
appropriate prevention,
detection, and treatment
of these conditions.
provements could include the integration
of vision and dental prevention programs
in primary and specialty care practices,
with a particular focus on programs that
cross the life span and are applicable to
individuals with ID [Evenhuis et al.,
2001a; Waldman et al., 2001; Kerr et al.,
2003; Mouradian et al., 2004; USPSTF,
2004a, 2004b]. In addition, physicians
and dentists may be better able to care for
individuals with ID who may require
additional time and expertise, if they are
adequately reimbursed for services related to vision and dental prevention and
early treatment [Waldman and Perlman,
2001, 2002; Mouradian et al., 2004].
As suggested in Closing the Gap: A
National Blueprint To Improve the Health of
Persons with Mental Retardation [US PHS,
2001], health promotion activities for vision and oral health could be integrated
in the community environments of individuals with ID through education and

support of individuals with ID on the


importance of participating in vision and
dental screenings and in oral hygiene.
Although existing screening and health
promotion programs may need to be
adapted to accommodate this population,
many researchers have demonstrated the
effectiveness of screening programs for
individuals with ID [e.g., Jones and Kerr,
1997; Evenhuis et al., 1997; Evenhuis
and Nagtzaam, 1997].
According to the literature, prevalence estimates of specic vision problems and oral health conditions among
individuals with ID range from 0.1 to
100% and 18 to 97%, respectively, depending on the specic condition and
population being studied. The same
prevalence estimates in the general population for vision problems and oral
health conditions range from 0.1 to 27%
and 0 to 78%, respectively. The differences in these estimates suggest that more
attention needs to be given to the vision
and dental needs of individuals with ID,
through accurate and appropriate prevention, detection, and treatment of
these conditions. f
ACKNOWLEDGMENT
Initial preparation of this manuscript was supported by a contract to Yale
University from Special Olympics, Inc
and by training grants from the National
Institute of Mental Health (5T32MH15783 and 5T32-MH19545). The
views herein are the authors. They do
not necessarily reect the views or policies of the New York City Department
of Health and Mental Hygiene, the
Agency for Healthcare Research and
Quality, or the U.S. Department of
Health and Human Services.
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