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The Adult
With Cerebral Palsy
Clyde E. Rapp,
Jr, MD; Margarita M. Torres, MD
(total
credit for this article goes to the above authors and the
American Medical Association )
Important aspects of eliciting a proper history, obtaining a
review of systems, and performing a physical examination in
adults with cerebral palsy are presented. Information regarding
diagnosis, etiology, and epidemiology of cerebral palsy as well
as suggestions for performing examinations and procedures on
uncooperative and extremely dysmorphic patients are included. A
MEDLINE search of all English-language publications related to
cerebral palsy from 1985 to 1999 was conducted. Other older
references also were obtained from articles published during
this period. Our personal experiences in caring for a group of
approximately 300 adults with cerebral palsy and other
developmental disabilities in specialized centers for nearly a
decade are used frequently throughout this review. Emphasis is
given to studies of adults. Studies of children are included
because there is a lack of data on adults. These studies are
identified as such in the text, with extrapolation to adults
only where there is a sound clinical or scientific basis. The
number of adults with cerebral palsy is increasing. This growth
is due to increased survival of low-birth-weight infants and
increased longevity of the adult population. Depending on
clinical status and the age at which survival is calculated, 65%
to 90% of children survive until adulthood. Despite these
observations, there is a lack of information in the literature
and a lack of relevant postgraduate training programs for
physicians in the adult health care system.
Arch Fam Med. 2000;9:466-472
This
article provides information about performing a physical
examination, eliciting a history, and a review of systems in
adult patients with cerebral palsy, which should equip the
primary physician with a basic approach to this group of
patients.
Cerebral palsy is usually defined as a nonprogressive disorder
of motor function occurring in young children in the prenatal or
perinatal period.
1
Cerebral palsy frequently includes paresis and in coordination
and can result in involuntary movements.1,
2
The
prevalence of cerebral palsy among children is 1.5 to 2.5 per
1000.3-5 There has also been a gradual
increase in the prevalence of cerebral palsy from the mid-1960s
to the mid-1980s, which parallels the increasing survival of
low-birth-weight infants.6-9 Two recent
studies have shown a decrease of approximately 0.5 per 1000 live
births from the mid-1980s until 19925 and
1989.10 This does not negate the earlier
significant increase in prevalence.
The
precise number of adults with cerebral palsy is not known, but
the number has been estimated at 400,000.11
Ninety-five percent of children with diplegia and 75% of
children with quadriplegia survive until the age of 30 years.12
Ninety percent of children with mild mental retardation and 65%
of children with severe mental retardation survive until the age
of 38 years.12 Overall survival of all
children with cerebral palsy until the age of 20 years is 90%.13
Therefore, cerebral palsy, which is second to mental retardation
as the most frequent developmental disability in children,14
is becoming more prevalent in the adult population.
Concurrently, there is an increasing trend to transfer adults
with cerebral palsy from long-term care facilities to the
community.15 Primary care physicians and
specialists in the adult health care system, however, have not
had special training dealing with adults with developmental
disabilities.16-20
A
recent study documented excess mortality in adults with cerebral
palsy from cancer, stroke, and Ischemic heart disease (including
a ratio of observed to expected cases of breast cancer of 3.021).
The authors postulate that their findings may result from poor
surveillance and a lack of early detection. A second study
documented a lack of periodic health care, including breast
examinations and routine gynecologic care.11
THE HISTORY
Eliciting a history may be difficult in view of speech and
language deficits or varying levels of cognitive impairment. A
number of patients may lack the ability to give a history orally
but can achieve some level of expression, such as accurate yes
or no responses. It is important to remember that many patients
who do not speak can achieve some level of comprehension.
Patients may use augmentative communication devices (such as
letter and picture boards or talking computers), and caregivers
may assist in interpretation of gestures and unintelligible
speech patterns. It is important to identify the patient's level
of comprehension and ability to actively participate in health
care decision making. If the patient has moderate to severe
cognitive defects, informed consent should be obtained from a
health care proxy, such as a parent, eldest sibling, or
court-appointed guardian, but it is important to inform the
patient about procedures to the extent that his or her cognitive
state allows.
Pregnancy and Early Medical History
Cerebral palsy is a clinical syndrome with a variety of
etiologies including vascular, genetic, metabolic, traumatic,
and primary neurologic causes.22 Detailed
description of the etiology is beyond the scope of this article,
and often the cause is not known.
A
series of studies and reviews in the last 20 years has
demonstrated the poor correlation of Apgar scores and the
occurrence of cerebral palsy.23-28 Low birth
weight and prematurity, however, have been shown to be
correlated with cerebral palsy.29-31 There is
no conclusive evidence that cerebral palsy is related to injury
sustained at birth or perinatal asphyxia related to delivery.23-28,
32
Children with cerebral palsy have delayed developmental
milestones, and usually develop spasticity before the age of 15
months.1 In addition, athetoid or ataxic
movements may develop during the first several years of life.
After this period, both the neurologic examination and
neurologic symptoms remain static during childhood in cerebral
palsy. Seizures usually occur before the end of the second year
(Table
1).33
It is important to stress that many infants who develop cerebral
palsy are not premature and many premature infants do not
develop cerebral palsy. When inquiring about developmental
milestones, the physician should stress the eventual achievement
of these milestones (Table
2). It may be of interest to
review brain imaging studies obtained previously or to obtain a
new magnetic resonance image if there has not been a recent one.
Any doubts regarding the accuracy of the diagnosis will confirm
the need for an evaluation by a neurologist or a physiatrist.
The Functional and
Social History
The
functional and social history should be elicited with the focus
on social and daily living skills. Social skills include school,
leisure and recreational activities, involvement with peers, and
other interests.
An
inquiry should be made about the patient's ambulatory status.
Twenty percent of adults with cerebral palsy can walk, 40% are
only able to walk with assistance, and 40% are nonambulatory.34
A large number of patients do not have an appropriate wheelchair
or device to assist with ambulation, so an inquiry about such
mobility devices is appropriate.
One
should inquire about the patient's domicile, which should be as
nonrestrictive as possible35,
36 so that it facilitates the skills of independent living.
Instrumental activities of daily living include household
chores, use of a calculator and checkbook, and community level
mobility. These skills should be developed to the level that the
patient's physical and cognitive abilities allow, increasing
personal and societal independence.
Approximately one third of adults with cerebral palsy live at
home.34 Many of the parents of adults with
cerebral palsy are elderly and do not have the physical
capability to care for an adult with cerebral palsy.37
Thus, one should inquire about the physical capacities of the
family and contingency plans for future care.
Patients who are able to use computers and family members of
other patients may benefit from a Web site from United Cerebral
Palsy (http://www.ucpa.org),
which includes information about recent research,
computer-assisted communication devices, and employment
opportunities.
REVIEW OF
SYSTEMS
Cerebral palsy involves the neuromuscular system primarily.
However, the standard review of systems should be augmented by
specific inquiries concerning other commonly involved bodily
systems. Areas that should be stressed are discussed in the
following section.
Hearing and Vision
Visual
defects exist in 25% to 39% of adult patients.34,
38 The etiology among adults has not been
studied, but in children causes include cataracts, optic
atrophy, and retinitis.1 Inquiries relating to
feeding and handling of small objects may provide clues that
point to visual deficits, and these patients must be further
examined by eye care specialists.
Eight
percent to 18% of adult patients with cerebral palsy have
hearing problems.34, 38,
39 Gross testing may include reaction or
response to noise, although specific audiologic testing will be
necessary to diagnose and treat hearing loss.
There
is evidence that both hearing and vision become worse with age39
so that periodic reexamination becomes necessary.
Cardiovascular System
Detailed studies are not available, but 9% to 10.5% of adult
patients with cerebral palsy have cardiovascular problems,
including arterial hypertension and coronary artery disease.
However, a recent study documents excess mortality among adults
with cerebral palsy from Ischemic heart disease,21
which may reflect a failure to detect subtle clues to Ischemic
heart disease (usually offered by a family member or caregiver),
such as agitation or change in skin color.
Patients (or their caregivers) may mention swelling,
discoloration, or change in temperature of the lower limbs.
Decreased temperature of the limbs has also been noted in the
literature.15 A precise explanation for these
presumably vasomotor findings of the limbs is lacking. Although
not adequately described in the literature, a low incidence of
deep vein thrombosis despite the presence of swelling and
immobility in those with spastic quadriplegia has been noted in
our patient population. Proper shoes and compression stockings
and careful skin and toenail care should prevent complications
such as hypertrophic and mycotic toenails, pressure ulceration,
cellulitis, and phlebitis.
Pulmonary System
Patients with quadriparesis34 and those with
gastrostomy tubes are at increased risk of aspiration.40
Nasal regurgitation, elevated temperature, lethargy, and slowly
progressive dyspnea are indicators of aspiration of oral
contents or gastric contents.41 Aspiration
may result from swallowing dysfunction or impaired gastric
emptying, causing reflux into the esophagus.
An inquiry about the
presence of coughing during or immediately after a meal should
be made. Clinical swallowing evaluation and a video fluoroscopic
examination allow one to determine if a swallowing dysfunction
exists. A change in solid and liquid diet consistency, teaching
techniques to protect the airway,41,
42 and proper positioning during and after
meals decrease the occurrence of pulmonary involvement.
Gastrointestinal System
The major gastrointestinal complaints are vomiting and
constipation. Vomiting is frequently the result of delayed
gastric emptying (which predisposes
the patient to gastroesophageal reflux and esophagitis).
We have documented delayed emptying in a number of our patients,
and it has been noted to be delayed in neurologically impaired
children.42, 43
Gastroesophageal reflux also becomes more severe as the patient
progresses through adolescence.44
Constipation is
frequent. Abnormal autonomic control of gastrointestinal
motility,45 immobilization, inadequate oral
intake, and prolonged colonic transit46 are
probably important concurrent factors. Therefore, an inquiry
should be made about bowel habits, and increased fluid and fiber
with or without laxatives should be prescribed when appropriate.
Speech and Swallowing Problems
Approximately 60% of
young adults with cerebral palsy have a speech or communication
problem.47, 48 This
disability may stem from cognitive impairments or oral motor
apraxia. Functionally, the person presents with mild to severe
dysarthria, difficulty with management of oral secretions, and
dysphagia.49, 50
Feeding adults
with cerebral palsy may take 45 minutes to 1˝ hours, and this
may result in poor energy (caloric)
intake and weight loss if the caregiver or relative does not
allow adequate time to feed the patient. If there is evidence of
weight loss, then a food intake and weight diary should be kept
to monitor nutritional status.
Musculoskeletal
System
Degenerative hip
disease and acetabular dislocation are common complications
during the adolescent growth spurt, particularly in children
with athetoid cerebral palsy.51,
52 Increased pain when sitting and standing
is usually a manifestation of this condition. Pain is often
experienced in the groin and anterior thigh. These patients
should be referred to an orthopedist.
Patients with
cerebral palsy frequently have various and often asymmetric
abnormalities of the ankle-foot system, such as flat feet, varus,
valgus, or equinus of the foot. Because the foot bears weight
during standing and sitting, it is important to examine the
foot, prescribe adequate footwear, and promote proper nail and
skin care, with referral to an orthopedist when appropriate.
Scoliosis is more
common in patients with cerebral palsy, occurring in 25% to 64%
of institutionalized adults.53 Orthopedic
referral is important for all patients with cerebral palsy who
have scoliosis, since uncorrected scoliosis may result in
decreased ambulation and decubiti.53
Osteopenia54,
55 and low bone density56
have been found in children with cerebral palsy, particularly in
the nonambulatory patient.57 We have found a
disproportionate number of adults with osteopenia as well.
Adults with cerebral palsy have a lower dietary intake of
calcium.58 Factors such as decreased exposure
to sunlight, immobility, spasticity, and the metabolic
conversion of the precursors of vitamin D to inactive
metabolites56 by anticonvulsant medications
predispose the patients to fractures. In our experience,
osteoporosis becomes worse as the patient ages. Patients with
risk factors (such as family
history, postmenopausal state, and fracture)
should undergo x-ray absorptiometry. If osteoporosis is
documented, then appropriate exercises should be prescribed.
Endocrinologic referral should also be considered, since the
patient may benefit from calcium supplements or a specific
medication (such as one of the
biphosphonates) for osteoporosis.
Neurologic System
Any neurologic
change, such as a change in balance or the frequency of
seizures, should be taken seriously, since it may reflect a
progressive condition. When neurologic change is reported, the
patient should be referred to a neurologist.
Seizures are present
in 30% of individuals with cerebral palsy.33
The type, frequency, and duration of seizures should be noted.
Neurologic evaluation, including an electroencephalogram, would
be helpful to determine need for the continuation of
anticonvulsant medication use into the adult years, particularly
when patients have been seizure free for 2 years or more.
A history
should include a description of the patient's functional
capacity, which is an indicator of the extent to which cerebral
palsy has interfered with activities of living. An inquiry
should be made concerning the extent of the patient's
independence in regard to grooming, toileting, dressing,
transferring (from a wheelchair to
a bed), and ambulating
Reproductive System
and Sexuality
Our observations and those of others
indicate that adolescents with cerebral palsy and other static
encephalopathies have delayed and prolonged puberty with a poor
nutritional state as the primary reason.59
They may develop precocious puberty as well.60
The necessity of recognizing the timing of sexual maturation and
providing age-appropriate sexuality education is important. It
is also important to determine if the patient is sexually
active. Questions regarding sexuality should be posed privately,
using normalizing statements and open-ended questions.
Urinary Tract
Bladder dysfunction,
including a small irritable bladder that results in frequent
urination and possible ureteral reflux, or a hypotonic enlarged
bladder is found in a small percentage of children.61
Both can result in infection and incontinence. Although our
experience with adults is similar, lack of learning capacity,
resulting in the inability to train the bladder and
incontinence, is the most common reason. Structural
abnormalities that lead to recurrent infection are rare.62
Dysuria may be
difficult to assess. Grimacing or distress as noted by the
caregivers when the patient urinates often indicates infection.
A change in the frequency of urination also provides a
diagnostic clue.
Diet and Nutrition
One should inquire
about a typical day's meals and snacks. Studies have documented
that many immobilized or partially immobilized children with
cerebral palsy consume enough food to meet their energy needs
but not enough to meet their nutritional needs.63
Fat-free mass is thus deficient in these patients.64
Feeding problems in adolescents with low caloric intake may
result in poor growth and decreased muscle mass at maturity.65
These childhood and adolescent nutritional profiles are relevant
to adult patients, since they result in an adult with low
fat-free mass. Athetoid patients require special attention,
since they may have higher caloric requirements.66
Reductions in
appetite and weight can be harmful to the adult who already has
a low fat-free mass and resultant malnutrition. A diet with
sufficient iron (particularly in
female patients) is also important,
since iron deficiency anemia is common in women with cerebral
palsy.58
THE
PHYSICAL EXAMINATION
A comprehensive
physical examination should be performed on patients with
cerebral palsy. In addition, the physician's office should be
wheelchair accessible, which includes a doorway and bathroom
entrance of adequate width and an examination room where a
patient in a wheelchair can turn around.67
The Neuromuscular System
Cerebral palsy is
frequently described as hemiplegic, diplegic, quadriplegic, or
choreoathetoid. Changes in limb weakness, spasticity, or
involuntary movements over time and the extent and location of
limb involvement should be noted.
Physiologically, in cerebral palsy there is a loss of inhibitory
control of spinal reflexes, which results in spasticity68
and exaggerated reflexes, including deep tendon reflexes
accompanied by clonus1 in some cases. In many
adults, spasticity evolves into contractures.69
The shortened, contracted muscle has fewer sarcomeres
(and, therefore, less weight and power)
than the normal muscle.70, 71
Shortening of the muscles by contractures in cerebral palsy
decreases the range of length over which tension can be actively
generated,72 resulting in weakness, decreased
range of motion, and poor coordination, which become worse as
the patient ages.18 Therefore, the effect of
the patient's contractures and spasticity on his or her mobility
and coordination during activities, such as reaching or walking,
should be noted. Spasticity and contractures vary with position
and patient stress; the patient should be examined in active and
passive movement and voluntary functional activities.
Range-of-motion
charts are frequently available.
Figure 1 shows charts for the large joints of the arms and
legs. The most common contractures should be noted. In the upper
limbs, these are flexion and pronation of the forearm, internal
rotation and adduction of the shoulder, flexion of the wrist,
flexion of the fingers at the interphalangeal joints, and
adduction of the thumb or "thumb in palm deformity." In the
lower limb, the most common contractures are flexion of the hip
and knee, adduction of the hip, flexion of the toes, and plantar
flexion of the foot. The Ashworth scale is a nonquantitative
scale that has been widely used as a clinical measure of
spasticity and seems to have good face validity
(Table
3).73
Release of joint contractures has been successfully performed,
and orthopedic referral should be considered when they are
present.
The patient's
gait pattern should be observed. Gait analysis studies in
patients with spastic hemiplegia show the following:
(1) variable
involvement of the limb from mild plantar flexion of the foot
during the swing phase of gait to persistent equinus,
(2) knee
extension, and (3)
dynamic hip flexion contracture with lumbar lordosis and
exaggerated pelvic tilt.74 These
abnormalities may occur in variable combinations.
Patients with spastic
diplegia most commonly show scissoring or hip adduction due to
spasticity of the adductors during the swing phase.75,
76 Initial contact of the foot with the floor
often does not occur in the normal heel-first manner, causing
calluses in the metatarsal area along with pain and joint
deformities. An abnormal ankle-foot system (which may take a
variety of forms) may be caused by a tight heel cord, spasticity
of the anterior or posterior tibialis muscles, or a spastic
gastrocnemius soleus muscle. Computer-assisted gait analysis
will indicate which of these abnormalities is causing the
problem. Computer-assisted gait analysis is also essential
before treatment interventions, since a dynamic change may be
the result of bone and ligament malalignment, soft tissue
laxity, muscle timing (activation and shut-off during the cycles
of gait), spasticity, or contractures. Intervention depends on
the specific cause, since surgical approaches often follow gait
analysis.
Examination of the
Genitals
There is a higher incidence of
cryptorchidism in adults with cerebral palsy than in the general
population, with an incidence of 53% at the age of 21 years.77
The patient must be standing (or
supported in a standing position)
to determine with accuracy whether the patient has undescended
testes or retracted testes. If the testes are not visualized or
palpated, then further examination by a urologist is necessary.
The Pelvic and Breast Examination
A pelvic
examination may be a particularly difficult experience for an
adult with cerebral palsy, leading to poor cooperation. The
difficulty is the result of fear and tension and spasticity of
the adductors of the thighs. The examination may be performed in
the lateral decubitus position, which may improve cooperation
and allow easier insertion of the speculum and collection of the
specimen for the Papanicolaou smear. Use of a small speculum may
also facilitate successful completion of the examination. If the
patient is uncooperative, anesthesia may be required. After the
initial examination is performed with the patient under
anesthesia, a pelvic ultrasound may be substituted for the
pelvic examination for the following 2 years.78
In the absence of symptoms suggesting a pelvic pathologic
condition, another examination with the patient under anesthesia
need not be done for another 2 years
(Table
4).
Mammography is
often difficult because of poor cooperation and because the
patient's dysmorphologic condition does not allow her to be
properly positioned on the x-ray machine. In these cases, a good
breast examination (which should be
done anyway), with referral to a
specialist in breast disease and ultrasound if abnormalities are
suspected, is recommended (Table
4).
The Dental Examination
A description of the
technical aspects of dental care for the patient with cerebral
palsy is beyond the scope of this article. Lack of cooperation
in the case of those patients with cerebral palsy who have
mental retardation is frequently a problem, however, and the
dentist and primary physician should discuss appropriate
management.
The 4 methods
of managing an agitated patient with poor cognitive skills are
(1)
oral sedation, (2)
restraints and oral sedation, (3)
intramuscular or intravenous sedation in the dental office, and
(4) general anesthesia.79 The primary care
physician should inform the dentist about which type of oral
sedation has been successful in other situations where sedation
is needed (our experience has been
that restraints without other sedation are not effective).
If general anesthesia is selected, it is often expeditious to do
as much dental work as possible at one time so that frequent
general anesthesia is not necessary. The procedure should be
scheduled so that the effects of sedation are still present when
the patient is examined or undergoes treatment.
Miscellaneous Dysmorphic Findings
Miscellaneous
findings that are increased in frequency in cerebral palsy
include a variety of dysmorphic features. Prominence of the
occiput, hyperextensibility of the digits, multiple nevi,
Microcephaly, a long thin upper lip, malformed ears,
chorioretinitis, syndactyly, and polydactyly have all been
described.1 Obviously, some of these findings
may reflect the cause of the patient's cerebral palsy, such as
Microcephaly in cerebral palsy secondary to cytomegalovirus
infection, whereas others reflect manifestations of genetic
syndromes.22 No doubt many other dysmorphic
features occur in cerebral palsy that have not been described in
the literature because of the role of genetic factors in the
etiology of cerebral palsy,71 since genetic
syndromes are frequently accompanied by dysmorphic features.
Evans et al13
wrote that it was their hope that cerebral palsy will become "a
condition with which one lives rather than one from which one
dies." It is suggested that this is an appropriate mission
statement as we attempt to develop a medical care delivery
system for adults with cerebral palsy and provide appropriate
training for physicians to meet their needs.
CONCLUSIONS
From 65% to 90% of
children with cerebral palsy survive into adulthood, creating a
large number of adults with a need for medical care. The
incidence may continue to increase because of increased survival
of very low-birth-weight infants and/or increased longevity of
the general population.
Currently,
specialized training programs dedicated to the care of adults
with cerebral palsy are practically nonexistent. In addition,
there is a paucity of contributions to the literature concerning
adults with cerebral palsy. This article has reviewed the
important aspects of the history, review of systems, and
physical examination of adults with cerebral palsy. Suggestions
for performing examinations and procedures on patients with
cerebral palsy were provided as well.
Author/Article Information
From the Center
for Adults with Developmental Disabilities, Department of
Pediatrics, Albert Einstein Medical Center
(Dr Rapp),
and Eastern Regional Center for Adults with Spina Bifida, Moss
Rehab (Dr Torres),
Albert Einstein Healthcare Network, Philadelphia, Pa.
Reprints: Clyde E. Rapp, Jr, MD, Center for Adults with
Developmental Disabilities, Albert Einstein Medical Center, 5501
Old York Rd, Philadelphia, PA 19141.
Accepted for
publication January 13, 2000.
We thank Michael
Alexander, MD, Steven Bachrach, MD, and Edith Hasbrouck, MD, for
reviewing the manuscript. In addition, the assistance of Walter
Gerber, MD, for providing guidelines for the evaluation of
cryptorchidism is greatly appreciated. We would also like to
thank our consultant colleagues whose perseverance has helped us
develop an approach to adults with cerebral palsy.
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