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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. Horwitz
4,5
1
Agency for Healthcare Research and Quality, Rockville, Maryland
2
New York City Department of Health and Mental Hygiene, New York, New York
3
Department of Psychology, Yale University, New Haven, Connecticut
4
Child Study Center, Yale University School of Medicine, New Haven, Connecticut
5
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, pre-
sents 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 con-
ditions 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. Recommenda-
tions 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
treatment in the healthcare system. 2006 Wiley-Liss, Inc.

MRDD Research Reviews 2006;12:2840.


Key Words: intellectual disability; dental; vision
O
ver the past 20 years there has been growing recogni-
tion of the importance of health promotion and pre-
vention 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 condi-
tions, 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 impor-
tance 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
goals for individuals with ID or the difculties that this popu-
lation 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 devel-
opment, 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 promo-
tion and disease prevention. Several recommendations to im-
prove 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 ra-
tionale 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 recommenda-
tions 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
MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES
RESEARCH REVIEWS 12: 2840 (2006)
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.
ID and provides some suggestions to
strengthen vision and oral health research
for individuals with ID.
METHODS
This article originated from a re-
view of the research literature commis-
sioned 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. Med-
line and PsychInfo (19802005) 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 inter-
national organizations (e.g., Montana
Disability and Health Program, Ameri-
can 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 Associ-
ation for the Scientic Study of the In-
tellectual Disabilities) were included in
the paper. Further, for the original re-
port, individuals from several federal
agencies (including the Centers for
Disease Control and Prevention, the Na-
tional Council on Disability, the Presi-
dents Committee on Mental Retarda-
tion, the U.S. Bureau of Census, and the
U.S. Department of Health and Human
Services) were contacted and inter-
viewed. These interviews were not rep-
licated for this paper.
All vision and oral health articles
related to individuals with ID (or mental
retardation) and those related to individ-
uals 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 indi-
viduals 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 in-
clude 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-
sidered for inclusion, only 170 articles
were directly pertinent and detailed
enough to be admitted to this review.
REVIEW OF THE LITERATURE
Prevalence of Vision Problems
Overall prevalence
Available data suggest that vision
problems (e.g., refractive errors, strabis-
mus, 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. pop-
ulation are reported to be opthalmo-
logically normal, only 28% of children
with ID have been so categorized [Law-
son and Schoofs, 1971]. A similar, if not
more striking pattern can be seen among
adults. For example, while 5% of those
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 prob-
lems [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 de-
creased vision in individuals with ID is
refractive errors, including hyperopia
(farsightedness), myopia (nearsighted-
ness), and astigmatism [Maino et al.,
1996] (Table 1). While 4 to 25% of the
U.S. general population has a refractive
error, 27 to 52% of individuals with ID in
the United States and Canada have been
reported to require correction of refrac-
tive 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 ad-
ministrative data from hospitalized or in-
stitutionalized 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]. In-
ternational research on specic subpopu-
lations of those with ID, however, has
found slightly lower prevalence estimates
of those with refractive errors. For exam-
ple, 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 [in-
telligence quotient (IQ) 25] had re-
fractive errors [Jacobson, 1988; Kwok et
al., 1996].
In addition, research has examined
the prevalence of specic types of refrac-
tive errors. Woodruff et al. [1980] found
the prevalence of astigmatism among in-
stitutionalized Canadian individuals with
ID to exceed 30%. Levy [1984] found
higher percentages of hyperopia/astig-
matism than myopia/astigmatism among
Canadian adults with ID (23 and 13%,
respectively). In contrast to most West-
ern studies indicating that hyperopia is
more prevalent than myopia among in-
dividuals with ID, Kwok et al. [1996]
found myopic and hypermetropic astig-
matisms 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 stra-
bismus among individuals with ID ex-
ceeds that of the general population
(Table 1). While the prevalence of stra-
bismus in the U.S. population has been
found to range from 3 to 8%, the prev-
alence 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
Available data suggest
that vision problems
(e.g., refractive errors,
strabismus, cataracts,
keratoconus) are more
common among
individuals with ID than
those without ID.
29 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd

VISION PROBLEMS AND ORAL HEALTH CONDITIONS

OWENS ET AL.
al., 1997]. Similarly, while the overall
population prevalence of strabismus out-
side the United States ranges from 1 to
10%, international researchers found the
prevalence of strabismus among individ-
uals 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; Ai-
tchison 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 (opac-
ity of the lens of the eye, the capsule, or
both) and keratoconus (swelling and scar-
ring 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;
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 re-
ported 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 preva-
lence 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]. Sim-
ilarly, prevalence estimates of keratoco-
nus 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;
Maino et al., 1996; McCulloch et al.,
1996; Warburg, 2001b; van Splunder et
al., 2004]. These high prevalence esti-
mates among individuals with ID may be
due, in part, to the association between
cataracts, keratoconus, and Down syn-
drome, as discussed below.
Severity of ID has been found to
be associated with the prevalence of vi-
sion 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 se-
verity of disability and refractive error
Table 1. Summary of Prevalence Estimates of Specic Vision Problems
Condition
General Population Individuals with ID
a
Severity of ID Special Populations with ID
Adults (%)
Children
(%) Adults (%)
Children
(%)
Mild/
Moderate
(%)
Severe/
Profound
(%)
Special Olympic
Athlete (%)
Down Syndrome
(%)
Refractive errors
b
United States 425 224 2739 4352
c
57 2662 2170
References
9,17,45, 46,48 26,45,48,49,60 23,34,43 31,35 19 5 7,8,23,42,44
International 655 325 1662 5280 2763 2457 1745 1375
References
22,32,46,52,53,56,57 30,55 1,15,21,22,32,
36,5154,59
3,28,58 37,53 29,37,53 56,57 1,4,12,14,18,20,21,33,
37,38,40,50,53,55
Strabismus
(squints)
United States 38 25 1627 57
c
2032 1925 2757
References
5,39 39 23,34,43 35 2,19 5,11 7,8,10,13,19,23,4244
International 110 12 445 2140 1643 1960 1934 969
References
6,32,52,53,56 33 1,21,22,32,36,
52,53,59
3,58 36,37,53,59 36,37,53,59 11,56,57 1,4,12,14,21,33,37,38,
40,41,50,53,55
Cataracts
United States 158
d
.1 715 12
c
21 3 578
References
9,17,23,27,39,47 39 23,43 31,35 19 11 7,8,10,13,19,23,42,44
International 117
c
369 3 17 21 533 565
References
16,27 1,15,21,22,25,
32,36,53,54
3 53 53 11,56,57 1,4,8,14,21,33,37,38,
40,41,50,53
Keratoconus
United States 1
c

c
315
References
24 8,13,23,44
International 1
c
119
c
2 7 3 130
References
53 21,22,32,36,53,54 53 53 56 4,8,21,22,33,37,41,50,53
a
ID, mental retardation.
b
Primarily includes hyperopia (farsightedness) and myopia (nearsightedness), but sometimes also includes astigmatism.
c
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,
2
Amos, 1977,
3
Bankes, 1974,
4
Berk et al., 1996,
5
Block et al., 1997,
6
Buch et al., 2001,
7
Caputo et al., 1989,
8
Catalano, 1990,
9
Congdon et al., 2003,
10
Cooley and Graham, 1991,
11
Corbin
et al., 2005,
12
Cregg et al., 2003,
13
Cullen and Butler, 1963 ,
14
da Cunha and Moreira, 1996,
15
Evenhuis, 1995,
16
Foran et al., 2003,
17
Friedman et al., 2002,
18
Gardiner, 1967,
19
Gormezano and Kaminski, 2005,
20
Haugen et al., 2001,
21
Hestnes et al., 1991,
22
Jacobson, 1988,
23
Jaeger, 1980,
24
Kennedy et al., 1986,
25
Kerr et al., 2003,
26
Kleinstein, 1984,
27
Kleinstein et al., 2003,
28
Kuroda and Adachi-Usami, 1987,
29
Kwok
et al., 1996,
30
Larsson et al., 2003,
31
Lawson and Schoofs, 1971,
32
Levy, 1984,
33
Lyle et al., 1972,
34
Maino et al., 1996,
35
Markovits, 1975,
36
McCulloch et al., 1996,
37
Merrick and Koslowe, 2001,
38
Murphy et
al., 2005,
39
NCHS, 1983,
40
Perez-Carpinell et al., 1994,
41
Prasher, 1994,
42
Roizen et al., 1994,
43
Sacks et al., 1991,
44
Shapiro and France, 1985,
45
Sperduto et al., 1983,
46
Eye Diseases, 2004a,
47
Eye Diseases, 2004b,
48
US DHHS, 2000b,
49
USPSTF, 2004b,
50
van Allen et al., 1999,
51
van Splunder et al., 2003a,
52
van Splunder et al., 2003b,
53
van Splunder et al., 2004,
54
Warburg, 2001b,
55
Woodhouse et al., 1997,
56
Woodhouse
et al., 2003,
57
Woodhouse et al., 2004,
58
Woodruff, 1977,
59
Woodruff et al., 1980,
60
Zadnik, 1997
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VISION PROBLEMS AND ORAL HEALTH CONDITIONS

OWENS 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 individu-
als 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 strabis-
mus 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 refrac-
tive 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 com-
peting at the 2001 UK National Games
(40%) compared with the general popu-
lation [Woodhouse et al., 2003], includ-
ing moderate to high hypermetropia (17
versus 9%, respectively), clinically signif-
icant refractive errors (35 versus 15%,
respectively), and strabismus (23 versus 2
to 4%, respectively).
Individuals with Down syndrome
also have more vision problems than in-
dividuals in the general population. In a
recent survey of parents of adolescents
with Down syndrome conducted by the
National Association for Down syn-
drome, Roizen [2002] noted that vision
was identied by 48% of parents as a
current medical need of their child.
Gardiner [1967] found a higher preva-
lence of visual needs among children
with Down syndrome, with 70% having
poor visual acuity compared with 30% of
children with ID unrelated to Down syn-
drome. 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 chil-
dren 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 re-
cently, 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 develop-
ment.
Refractive errors and visual anom-
alies among individuals with Down syn-
drome are not conned to childhood.
Several researchers have noted that indi-
viduals 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 prob-
lems tend to occur at an earlier age
among individuals with Down syndrome
than in the general population [Flax and
Luchterhand, 2005]. With increased lon-
gevity of individuals with Down syn-
drome, 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 popula-
tion 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 syn-
drome, this comparison group includes
those with Down syndrome.) (Table 1)
[Maino et al., 1990; Pueschel, 1995;
Saenz, 1999; Smith, 2001]. The preva-
lence 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; Cata-
lano, 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 Ka-
minski, 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]. Prev-
alence estimates of cataracts among indi-
viduals 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; Cata-
lano, 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 Ko-
slowe, 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 prev-
alence of keratoconus has been reported
to be between 3 and 30% among indi-
viduals 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
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.
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OWENS ET AL.
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 individ-
uals with ID that cause limitations in
their daily activities [Traci et al., 2002].
According to a recent pilot study of con-
sumers of Montana Developmental Dis-
ability services (80% of whom had ID),
Traci et al. [2002] found that the esti-
mated prevalence rate of oral hygiene
problems was 451 per 1,000 individuals
with developmental disabilities. Similar
to the general population, one of the
most common oral health problems of
children and adults with ID is dental car-
ies (Table 2). National and international
studies, however, do not provide deni-
tive 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 percent-
age or overall mean number of decayed,
missing, and lled teeth, and do not re-
port 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-
clusive [Tesini, 1981]. A few studies
have shown higher prevalence esti-
mates of decayed, missing, and lled
teeth among individuals with ID com-
pared to the general population [Pieper
et al., 1986; Shyama et al., 2001].
Other researchers have found lower
prevalence estimates of decayed, miss-
ing, and lled teeth among individuals
with ID [Butts, 1967; Svatun and He-
loe, 1975; Tesini, 1981; Forsberg et al.,
1985; Kendall, 1991; Gabre and Gah-
nberg, 1994; Vazquez et al., 2002]. Al-
though 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
Table 2. Summary of Prevalence Estimates of Specic Oral Health Problems
Condition
General Population Individuals with ID
a
Severity of ID Special Populations with ID
Adults
(%)
Children
(%) Adults (%)
Children
(%)
Mild/
Moderate
(%)
Severe/
Profound
(%)
Special Olympic
Athlete (%)
Down
Syndrome
(%)
Dental caries
United States 85 1861 96 6394 4284 441 5456 4296
References
36 16,36,37 1 3,4,11 4 4 8 1,3
International 3855 2071 8293 3296 84 79
b
2092
References
14,33 2,7,17,31 7,30 7,19,20,28,31 10 10 2,32
Untreated dental caries
United States 2030 1629
b
55
b

b
1131
b
References
21,29,36 8,21,36,41 11 5,8,24,29,41
International 55 33 1858 6384
b

b
35
b
References
14 20 6,15,16 20 5
Mean number of de-
cayed teeth
United States .4.8 .4.7 1.71.8 .82.8 2.85.3 .25.9
b
.61.6
References
44 44 22 4,22 4,26 4,26 22
International 1.03.3 0.13.2 .39.7 .22.0
b

b
4.59.7
References
44 44 6,15,16,25,27,
35,38,42
19,31 25,32,38
Mean number of miss-
ing teeth
United States 016.1 0.1 6.47.9 .62.5 .9 .6 1534
c
3.324.6
References
44 44 22 4,22 4 4 5,8,24,29,41 22
International .323.8 0.4 1.523.1 .3.7 2.25.6 3.4 39 .41.5
References
44 44 6,11,15,16,25,27,35,38,19,31 19,31 9,30 9 5 32,38
Mean number of lled
teeth
United States 3.88.4 01.2 2.75.5 .72.6 .52.1 0.4 5384 1.51.7
References
44 44 22 22 4 4 8,40 22
International .515.5 .11.9 .48.7 .51.3 5.510.7
b

b
.51.1
References
44 44 25,27,35,38,42 19,31 30

b 32,38
Gingivitis
d
United States 4248
b

b
635
b

b
3368
b
References
8,36 3,11 5,8,24,29,41
International 859 348 4475 2597 3349 2980 54 1097
References
18,33 12,17 6,16,42 20,39,40 23 23,34 5 12,18,39
a
ID, intellectual disability.
b
No related studies were available.
c
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;
2
Bradley and McAlister, 2004;
3
Brown and Schodel, 1976;
4
Butts, 1967;
5
Corbin et al., 2005;
6
Cumella et al., 2000;
7
Donnell et al., 2002;
8
Feldman et al., 1997;
9
Gabre and Gahnberg, 1997;
10
Gizani et al., 1997;
11
Guillikson, 1969;
12
Hennequin et al., 2000;
13
Kaste et al., 1996;
14
Kelly et al., 2000;
15
Kendall, 1992;
16
Kendall, 1991;
17
Lader et al., 2005;
18
Lopez-Perez et al., 2002;
19
Mitsea et al., 2001;
20
Murray and McLeod, 1973;
21
NCHS, 2004;
22
Nowak, 1984;
23
Palin et al., 1982;
24
Pezzementi and Fisher, 2005;
25
Pieper et al., 1986;
26
Pollack and Shapiro, 1971;
27
Pregliasco et al., 2001;
28
Rao et al., 2001;
29
Reid et al., 2003;
30
Shapira et al., 1998;
31
Shaw et al., 1986;
32
Shyama et al., 2001;
33
Stoyanova, 2003;
34
Sturmey and Hinds, 1983;
35
Svatun and Heloe, 1975;
36
US DHHS, 2000c;
37
USPSTF, 2004a;
38
Vazquez
et al., 2002;
39
Vigild, 1985;
40
Vignehsa et al., 1991;
41
White et al., 1998;
42
Whyman et al., 1995;
43
Winn et al. 1996;
44
WHO, 2005.
32 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd

VISION PROBLEMS AND ORAL HEALTH CONDITIONS

OWENS ET AL.
[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 liv-
ing in institutions had fewer decayed,
missing, and lled teeth than children
with mild or moderate ID. Forsberg et
al. [1985] found that children with se-
vere ID living in institutions had fewer
decayed, missing, and lled teeth com-
pared with children with severe ID not
living institutions or those in the gen-
eral population. The latter two com-
parison groups in the Forsberg study
had similar numbers of decayed, miss-
ing, and lled teeth. The low preva-
lence 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 se-
vere ID not living in institutions may
result from the prior removal of de-
cayed teeth and/or the low sugar diet
served in institutions [Tesini, 1981;
Forsberg et al., 1985; Vazquez et al.,
2002]. The majority of studies, how-
ever, have found similar prevalence es-
timates of decayed, missing, and lled
teeth among individuals with ID com-
pared to those in the general popula-
tion, even though these studies in-
cluded 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 examin-
ing 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 car-
ies show inconclusive results in compar-
ison 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 esti-
mates consistent with the general popu-
lation [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 den-
ing dental caries or the relative preva-
lence of dental caries among individuals
with ID to those in the general popula-
tion, 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 prob-
lems, 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 016
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 individ-
uals with Down syndrome, individuals
with other etiologies of ID, and individ-
uals in the general population. The pro-
portion of missing teeth to lled teeth,
however, was much higher among indi-
viduals with ID compared with the gen-
eral 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 esti-
mates of gingivitis in the range of 6 to
97% among individuals with ID com-
pared 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 preva-
lence estimates of gingivitis [Murray and
McLeod, 1973; Svatun and Gjermo,
1977; Tesini, 1981; Vigild, 1985; Ken-
dall, 1991]. Shapira et al. [1998] sug-
gested that the increased prevalence of
gingivitis among institutionalized indi-
viduals may be related to the mouth dry-
ness associated with certain medications
commonly used among individuals with
ID living in such settings. Increased prev-
alence also may be related to the in-
creased surveillance of gingivitis and poor
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 fo-
cused on Special Olympics athletes and
individuals with Down syndrome. Sev-
eral studies have reported the prevalence
of oral health screenings at Special Olym-
pics 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, doc-
umented the results of a screening pro-
gram 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 differ-
ence 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). Addi-
tional 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 de-
cay 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 docu-
mented 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 3544 years had gingivitis com-
pared 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 8-
to 17-year-old athletes, 58% among 18-
to 34-year-old athletes, 62% among 35-
to 50-year-old athletes and 48% among
51- to 70-year old athletes) and nation-
33 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd

VISION PROBLEMS AND ORAL HEALTH CONDITIONS

OWENS ET AL.
ality (approximately 42% among U.S.
athletes and 55% among European and
Eurasian athletes). In sum, Special Olym-
pic athletes, especially older athletes,
tended to have higher prevalence esti-
mates of untreated or poorly treated car-
ies and gingivitis compared with the gen-
eral 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 syn-
drome 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 (0.624.6) teeth is
greater than the mean number of lled
(0.51.5) teeth, compared with 1.03.3,
023.8, and 0.515.5, respectively, in
the general population and 0.29.7, 0.3
23.1, and 0.48.7, 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; Why-
man 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 sub-
population 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 ap-
propriate 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 prev-
alence of older individuals with ID, in-
cluding those with Down syndrome, re-
port vision problems than individuals of
the same age in the general population
[Evenhuis, 1995; Janicki and Dalton,
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 liv-
ing 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-
tion in institutions may account for the
higher prevalence of individuals with se-
vere ID who have vision problems com-
pared with individuals with mild or mod-
erate 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 re-
sponses [Barr-Agholme et al., 1992; Ne-
spoli et al., 1993; Yavuzyilmaz et al.,
1993; Beck et al., 1996; Amano et al.,
2000; Reuland-Bosma et al., 2001; Roi-
zen, 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 microorgan-
isms capable of causing disease) associated
with gingivitis compared with children
without ID. Other researchers have sug-
gested that individuals with ID have de-
creased levels of microora that prevent
the development of gingivitis [Yavuzy-
ilmaz et al., 1993].
Health Behaviors
Unlike the explanation for vision
problems, explanations for the preva-
lence of oral health conditions are more
frequently related to the self-care skills
and behavior of the individual. The in-
creased prevalence of oral health prob-
lems 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 com-
pared 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 coordina-
tion and cognitive sequencing skills that
limit independence in task completion
[Sturmey and Hinds, 1983]. Conse-
quently, 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 Henne-
quin, 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 par-
ticipating 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 self-
reported oral health habits of participants
in the 1997 San Francisco Bay Area Spe-
cial 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. Es-
timates 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 fre-
quency of performing oral hygiene tasks
with increased age (from approximately
Although the general
population has visual
and oral health needs,
the subpopulation of
individuals with ID has
even greater needs in
these areas.
34 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd

VISION PROBLEMS AND ORAL HEALTH CONDITIONS

OWENS ET AL.
89% among 8 to 17 year olds to 65%
among 51 to 70 year olds). Even among
this relatively high functioning popula-
tion of individuals with ID, in which
overreporting of positive health behav-
iors is expected, nearly one-fth did not
maintain oral hygiene habits on a daily
basis, providing evidence for the impor-
tance 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 re-
sult in inadequate detection and treat-
ment [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., Yoshi-
hara et al., 2005], research shows that
individuals with ID receive less appropri-
ate 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

screen-
ing program at the 2003 Special Olympic
World Summer Games. A study of Scot-
tish hospitals indicated that 56% of pa-
tients with disabilities had no record of
any past eye examination, and a dispro-
portionate number of those who did
have eye exams had only mild or mod-
erate 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 Spe-
cial 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 Spe-
cial Olympics Special Smiles

is to raise
awareness of dental care needs and en-
courage 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 stud-
ies 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 indi-
viduals with ID had a correctable spher-
ical refractive error, and 37% had a
correctable astigmatism. Even among in-
dividuals who receive correction, the
prescription may not be adequate. Mc-
Culloch et al. [1996], for example, found
that 38% of Scottish hospital patients
with disabilities did not have appropriate
correction of refractive errors. Early di-
agnosis and frequent assessments and in-
tervention can prevent the long-term ef-
fects of uncorrected visual anomalies
[Woodruff, 1977, 1980; Bartlett, 1987].
Additionally, individuals with ID
do not receive adequate restorative or
preventive dental care, despite the nd-
ings 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 indi-
viduals in the general population [Murray
and McLeod, 1973; Nowak, 1984;
Costello, 1990; Shaw et al., 1986; Gizani
et al., 1997; Cumella et al., 2000]. Pre-
ventive measures, such as dental sealants
to prevent dental decay, also are less fre-
quently used with individuals with ID,
despite their effectiveness among these
individuals [Richardson et al., 1981].
Recognizing the importance of this mea-
sure of preventive dental care in the gen-
eral population, the U.S. Surgeon Gen-
eral set a target of 50% of school children
to receive dental sealants by the year
2000. To date, 23% of 8-year-old chil-
dren 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 ath-
letes 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
range of prevalence estimates of individ-
uals 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 def-
icits and oral health conditions are con-
ducted with small sample sizes and use
medical records from hospitals or clinics
or focus on a selected population of in-
dividuals with ID who are more active in
the community (e.g., Special Olympic
athletes). Thus, the studies may not in-
clude 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 preva-
lence 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 preva-
lence estimates in U.S. studies, particu-
larly for those conditions that are amelio-
rated 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 documen-
tation of the severity of specic vision
problems and oral health conditions. For
example, some studies use the term vi-
sual impairment to refer to the func-
tional loss of vision that cannot be cor-
rected to a normal level, some use the
term as a synonym for visual acuity, and
others use the term generically to de-
scribe 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 pro-
vide only a snapshot in time. Compari-
sons of the results across studies can be
misleading, because prevalence estimates
35 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd

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also may change across time. Moreover,
few studies have comparison groups and
even fewer provide statistical tests for
comparisons between groups of individ-
uals. 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 hab-
its, medications, and medical diagnoses,
making comparisons and more sophisti-
cated understanding across studies dif-
cult [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 ex-
act prevalence of visual decits among
individuals with ID varies, depending on
the population studied. The most com-
mon conditions among individuals with
ID, both in the United States and inter-
nationally, 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 medi-
cation use associated with the institution-
alization 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 cor-
rection 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 par-
ticularly 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 func-
tioning in society and educational and
social benets for children, adults, and
their families. Given this, it is crucial that
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 nd-
ings 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 individ-
uals with ID are likely to have a higher
prevalence of gingivitis and other peri-
odontal diseases compared with the gen-
eral 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, individ-
uals with Down syndrome are more
likely to have gingivitis compared with
individuals in the general population. Al-
though increased surveillance may inu-
ence the prevalence of disease detected,
individuals living in institutions are at
increased risk for gingivitis and other
periodontal diseases compared with indi-
viduals in the general population.
As in the general population, good
oral hygiene is essential to prevent oral
diseases among individuals with ID. In-
terestingly, 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 par-
ticularly 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 individ-
uals with ID are essential. Healthy People
2010 outlines a standard by which to
measure health improvements in the
general population; however, it over-
looks individuals with ID [US DHHS,
2000a]. The baseline prevalence esti-
mates in Healthy People 2010 do not in-
clude individuals with ID, and the na-
tional databases used to derive estimates
of various conditions do not collect in-
formation specically from or about in-
dividuals with ID [US DHHS, 2000a].
Moreover, this review on vision prob-
lems 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 appropri-
ate 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 im-
prove planning, accurate prevalence esti-
mates of vision and oral health conditions
among individuals with ID are necessary.
As this review points out, prevalence es-
timates vary widely, suggesting that ac-
curate 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 commu-
nities could work together to achieve
population-based data relevant to indi-
viduals 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 set-
tings 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 Surveil-
lance 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 Consor-
tium), administrative data collection and
ultimately the prevalence estimates con-
tained within the state-level reports
could be standardized. These estimates,
then, could be aggregated to the national
level and compared across time. Empha-
sis 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
36 MRDD RESEARCH REVIEWS DOI 10.1002/mrdd

VISION PROBLEMS AND ORAL HEALTH CONDITIONS

OWENS ET AL.
les, and Medicaid and Supplemental Se-
curity Income (SSI) enrollment les.
Besides improving prevalence esti-
mates, this report identies a high need
for individuals with ID to have access to
appropriate screenings and early inter-
ventions for vision and dental care. To
achieve access to quality vision and dental
care, improvements need to be made to
the healthcare system overall. Improve-
ment strategies could include physician,
dentist, and nurse training in the man-
agement 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 em-
phasize prevention and health promotion
and early treatment options for individ-
uals with ID may be particularly bene-
cial [Mouradian et al., 2004]. Other im-
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 re-
lated 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 vi-
sion and oral health could be integrated
in the community environments of indi-
viduals 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, preva-
lence estimates of specic vision prob-
lems and oral health conditions among
individuals with ID range from 0.1 to
100% and 18 to 97%, respectively, de-
pending on the specic condition and
population being studied. The same
prevalence estimates in the general pop-
ulation for vision problems and oral
health conditions range from 0.1 to 27%
and 0 to 78%, respectively. The differ-
ences 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 pre-
vention, detection, and treatment of
these conditions. f
ACKNOWLEDGMENT
Initial preparation of this manu-
script was supported by a contract to Yale
University from Special Olympics, Inc
and by training grants from the National
Institute of Mental Health (5T32-
MH15783 and 5T32-MH19545). The
views herein are the authors. They do
not necessarily reect the views or poli-
cies 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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