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Spinal cord injury (SCI) has been transformed from an injury with nearly
certain death shortly after injury to a disability in which nearly all
people survive the injury process and then go on to active, productive
lives. With established survival following SCI we now face the issue of many
individuals growing older with SCI, adding to the normal aging process.
Through education and development of interventions that can be used to
modify the aging process and hopefully delay the onset of decline.
Introduction. In our lifetime, spinal cord injury (SCI) has been transformed
from an injury with nearly certain death shortly after the injury, to a
disability in which nearly all people survive the injury process and then go
on to active, productive lives.
Devivo, of National Spinal Cord Injury Database, Birmingham, Alabama1
presents a life expectancy for persons with SCI who survive at least 1 year
following their initial injury. From his data, an individual who is age 20
at the onset of the SCI has a substantial life expectancy. (See Table 1)
Table 1
C1-C4 ASIA Impairment ABC
C5-C8 ASIA Impairment ABC
T1-S5 ASIA Impairment ABC
ASIA Impairment D - All levels x
No Impairment - Normal Life |
32.8 yrs
38.6 yrs
44.8 yrs
44.8 yrs
56.3 yrs |
With established survival following SCI, we now face the issue of many
individuals growing older with SCI, adding to the normal aging process. A
study done in 1988, commissioned by the Paralyzed Veterans of America
2
indicated, of all SCI individuals in the United States, approximately 40%
were over 45 years of age and 25% were over 20 years post injury.
Craig Hospital’s SCI System was funded as a research and rehabilitation
training center focusing on issues of the aging SCI patient from 1993 to
1997. During that time we undertook a series of studies to identify and
understand the multiple issues of the aging process with SCI disability.
From these studies, we have identified a model in which we describe 3 phases
following the onset of SCI.3
Acute restoration. The first phase is acute restoration, which occurs during
the first 2 years following SCI. In acute restoration, a SCI individual
develops close to 100% of the ability and function they have for their given
neurologic injury. For a paraplegic this might involve gaiting or ambulating
on long-leg braces and forearm crutches. For a paraplegic at a higher level,
this might be complete independent living in a wheelchair. For a tetraplegia,
it may involve attendant care for several hours a day. For a high level
tetraplegia, it may involve being able to direct care givers in their care.
Maintenance Phase. After the acute restoration phase, a SCI individual
enters into a steady state which we describe as the maintenance phase. This
particular state lasts many years and is dependent in part upon the age of
disability onset and a series of aging variables, such as family genetics,
life style, adaptation to stress, sociologic role, and trauma. For a young
individual this stable state may be 20 plus years, whereas if an individual
who is elderly at onset, this state may last only several years. During the
maintenance phase, there is an additive effect of the normal aging process
and the superimposed additional stresses of SCI. Examples might be the
overuse of arms for transfers and pushing wheelchairs or insensate skin
break down that would not occur in a normal individual. This additive or
cumulative aging effect creates an accelerated aging process.
We perceive our SCI individuals as aging faster, that is coming to the point
in their life where they have to change the way in which they maintain
themselves at a much earlier
age than the general population.
Phase of Decline. The third and final phase of the SCI aging model is the
phase of decline, which refers to the phase in which an individual has to start modifying how they live their life as a
result of the aging process. This may involve changes, such as additional
equipment (ie, power wheelchair when a person in the past only used a manual
wheelchair), additional attendant care, and decrease in activity to mention
a few.
We see the model of aging with SCI applying to other disabilities. In
particular
the polio population demonstrates the effect of decline and as a group, have all gone throughout the phase of acute
restoration, maintenance, and are now solidly established in the decline
phase. Whereas SCI individuals are well established in the maintenance
phase, traumatic brain injury (TBI) systems of care are still working on
trying to establish the optimal acute restoration and maintenance programs.
To understand the aging process, it is critical to know the age at onset of
the disability. Because a normal aging process has occurred in an individual
before the onset of the disability, the extent of the pre-injury aging
process determines the ability to recover and adapt to the new SCI
disability. We know that as a normal individual gets older, their ability to
adapt to a new disability becomes less and as a result their outcomes or
levels of function are lower than would be experienced by a younger person.
Profiles of older individuals who sustained SCI have entirely different
demographics than those of younger individuals and show much lower levels of
independence and much greater likelihood of being discharged to institutions
than younger individuals.4
One of the significant issues identified in aging with a SCI disability is
the problem of aging care givers.5 Just as the individual with SCI ages, the
care giver, whether it be parents or spouses, all go through changes in
which they become less able to provide the care that they have provided for
many years following the onset of SCI. The problems of an aging care giver
presents an ethical dilemma in which the medical profession has focused
their attention on the individual with the disability and therefore, often
ignored the needs of the caregiver. It may also present
as a medical crisis when the mother and father, or other loving family
member, are no longer able to provide the quality of care in the home that
has prevented illness and hospitalization. These changes often force the
individual with disability to acquire new systems of care and/or move to new
institutions where care can be provided. These dramatic changes
often present emotional distress and require counseling and the development
of new psychological skills in both the SCI individual and their care
givers.
Quality of life is one parameter that
has always been a pleasant surprise to investigators in the aging process.6
Despite what appears to be declining function, decreased activities,
increased attendant care, and increasing equipment needs, individuals
frequently report they have never felt better about themselves nor more
whole at any point in their life since their SCI. This initially paradoxical
finding can best be explained by the perception that aging involves multiple
dimensions, one of which is physiologic, the second which is sociologic, and
the third, spiritual or growth of the soul. As people get older, in both
general populations and those with disability, there is a search for meaning
in life, and for many, this meaning in life becomes more important than the
various physiologic and sociologic changes or declines. Much remains to be understood of this process.
Traditionally, we have evaluated an individual with SCI by their impairment.7
An example using the American Spinal Injury Associations (ASIA) standard
medical classification of SCI would be to describe an individual as having
tetraplegia C6 last preserved segment ASI Impairment A. That means this
individual has wrist extensor muscle function last preserved and complete
loss of sensation and movement below the C6 neurologic level. As we get into
research on the aging process, it’s important to expand our understanding
beyond that of impairment. The impact of loss of function resulting from the
impairment is described as the disability,7 which means because this
individual has only wrist extensor function, they are unable to do a variety
of things, such as their bowel and bladder care, dressing, etc. Measurement
of those loses or disabilities is done through an instrument called the
Functional Independence Measurement (FIM),8 which is now widely used in all
medical centers for monitoring and evaluating change in function of an
individual. The FIM measures the amount of assistance a SCI individual needs
to maintain their daily routine function.
A new element is the concept of handicap.7 Handicap is described as the loss
of abilities to function in a community as a result of the disability, which
is the loss of function resulting from the impairment. Examples of handicap
would be the inability to get around a community in a wheelchair because it
may not be wheelchair accessible or because there is inadequate
transportation to accommodate an individual in a wheelchair. Another example
would be the inability to earn an adequate wage because of the loss of
function. At Craig Hospital, we have developed an instrument for measuring
and monitoring the effects of handicap. This instrument is the Craig
Hospital Assessment and Reporting Technique.9 In this instrument, a series
of questions are developed relating to physical independence, mobility,
occupation, social integration, economic self sufficiency, in which graded
responses are tallied and a score is developed indicating the extent the
individual has been integrated into the community. It will be important in
the years ahead to understand the effects of aging as it is measured by
handicapped scores (ie, integration in the community).
Physiologic Changes. In SCI, we see specific physiologic consequences of the
aging process, particularly in the urologic system, the gastrointestinal
system, the musculoskeletal system, and the neurologic system. The urologic
system, in particular, is effected in most SCI. We have identified that the
presence of a neurologic bladder diagnosis, regardless of the technique of
management, increases the risk for development of cancer of the bladder. In
a recent study of Craig Hospital patients, we found that the general
population has an instance of bladder cancer that is less than 0.1 percent.
Individuals with SCI appear to have an incidence of bladder cancer that
gradually increases from 0.2% in the first 10 years following SCI to 9%
after 30 years. This creates specific concerns in follow-up that we need to
be doing cystoscopic examinations of the bladder more frequently as an
individual gets older to make sure that we see and identify precancerous
and/or early cancerous changes so that we can initiate timely treatment and
changes.
Another specific area of concern is the gastrointestinal tract in which
control of bowel evacuation is lost following SCI. Studies done in Veterans
Administration has shown that there is a significant increase in all gastrointestinal pathology in all individuals with SCI. This ranges from
an increase incidence of gastric paresis and gall bladder disease, to severe
constipation and increased rectal pathology. In the area of musculoskeletal
system, it is well documented that there are increased incidences of
shoulder pain and pathology resulting from the use of the upper extremities
to perform body manipulations and maneuvers for transfers, getting in and
out of the wheelchairs, etc., that would normally be performed by lower
extremities.
Another significant problem in the musculoskeletal system is the general
loss of strength associated with normal aging. This gradual loss of strength
means that an individual who uses all of their strength following their SCI
to attain a certain degree of independence may very well lose that function
and independence as their muscles get weaker with age. Another
musculoskeletal concern, but poorly understood, is the risk of osteoporosis
and fractures, which results from accelerated osteoporosis following the
onset
of SCI.
In the area of neurologic function, we now know that approximately 15% of
individuals with SCI will have additional neurologic loss or pathology after
the initial recovery following SCI. This comes in many forms, such as loss
of strength and sensation, increased sweating and spasticity, onset of pain,
and usually occurs from cystic myelopathy and/or tethering of the spinal
cord. There is also increased risk of peripheral nerve injury, such as
median and ulnar nerve pathology at the wrist or elbow resulting from trauma
on the elbows and hands from the abnormal use of upper extremities for
mobility and function.
Conclusion. We have found that aging with SCI is not something to be taken
lightly. It needs to be addressed through education and development of
interventions that can be used to modify the aging process, and hopefully
delay the onset of decline phase of the aging model. To best deal with the
multiple issues of the aging process, a SCI individual needs to be followed
in a system of SCI care, which is familiar with the aging process and has
the appropriate surveillance methodology, educational resources, and
interventions to deal with the aging process.
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References
1. DeVivo MJ, Stover SL. Long-term survival and causes of Death. In SCI
Clinical Outcomes of the Model System. Aspen Pub;1995.
2. Berkowitz M. The economic consequences of traumatic spinal cord
injury.
Demos Pub;1992.
3. Menter RR. Issues of aging with SCI. In Aging with SCI. Aspen Pub;1993.
4. Roth EJ. The older adult with SCI. Paraplegia 1992;30:520-526.
5. Weitzenkamp DA. Spouses of SCI survivors: The added impact of caregiving.
Arch Phys Med Rehabil. 1997;78:822-827.
6. Gerhart KA. Long-term spinal cord injury: Functional changes over time.
Arch Phys Med Rehabil. 1993;74:1030-1034.
7. World Health Organization. International Classification of Impairments,
Disabilities, and Handicaps. 1980.
8. Ditienno JF. The international standards. Booklet for neurological and
functional classifications of SCI. Paraplegia . 1994;32:70-80.
9. Whiteneck GG. Quantifying handicap: A new measure of long-term
rehabilitation outcomes. Arch Phys Med Rehabitation. 1992;73:519-526.
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