Many myths surround aging. One of the most common
is the belief that getting older means being ill.
Another says that older people are less physically
and mentally active. A third common myth is that
older people have a poorer quality of life.
These tales arise partly out of our fear of the
unknown and partly out of our belief that aging
is a wholly negative process. And, aging is not
without its negative context. Undeniably, aging
is evidence that life is transient and relatively
short, proof that we have limited internal resources
and defences against countless external forces--one
of which is time itself. Indeed, aging is not a
preventable process; it is something that all humans
will encounter. It may occur at different rates
and at different ages and in different ways for
each person, but it will occur.
Unfortunately, differentiating normal aging from
a host of other medical, social, environmental,
chemical, physical, and psychological processes
is virtually impossible. For example, are heart
problems, cancer, or even just changes in the appearance
of our skin or in our visual acuity a result of
growing older or are they the result of specific
environmental or chemical exposures or genetic makeup's
that have nothing to do with age? Indeed, all are
highly interactive, all effect the aging process.
How then do we separate aging from these other issues
If aging is a complex topic, superimposing a disability--like
spinal cord injury (SCI)--only complicates it further.
In addition to all of the above "normal" aging-related
processes, disability brings its own questions,
theories, and conceptualizations. In the World Health
Organization's conceptualization of disablement,1
there is impairment--an abnormality of structure
or function, for example, spinal cord damage at
the C5 level. There is also disability--the dependencies
and limitations that result from an impairment,
such as not being able to walk, to dress, to live
independently. There is handicap--the social barriers
that result from impairments and disabilities, like
not being able to work, to raise children, to be
involved in the community. And, of course, there
are complications and secondary disabilities and
other issues that come later, after the initial
disability. Some are medical, some are physical,
and some are psychosocial. All impact and interact
with the aging process and illustrate how both the
topics of aging and disability are clouded and confused
by a plethora of terms, concepts, and issues. In
the end, it becomes very difficult to separate normal
aging from medical complications and from the initial
disability and its own complications.
When are a spinal cord injury survivor's chronic
infections, depression, or painful shoulders just
part of normal aging? After all, non disabled people
may have these very same problems. When are they
a sign or a result of accelerated aging caused by
the spinal cord injury? When are they neither and,
as some might argue, when are they just coincidental
secondary impairments and disabilities--medical
problems that are unrelated to either SCI or to
aging? What happens when such problems occur within
the context of a long-term SCI survivor's changing
living situation--a divorce, an aging caregiver,
a lost job, a changing neighbourhood that the survivor
no longer feels safe in? As a result of this confusion,
are true medical complications or psychosocial concerns--treatable
problems--being passed off as expected age-related
issues? Or, on the other hand, are we vainly struggling
to "cure" problems that really are nothing more
than normal aging? Are these questions just academic?
And, do we care about their answers? To this last
we must respond "Yes!" if how we answer affects
how we understand long-term spinal cord injury and
how we interact with and treat the long-term spinal
cord injured individual.
Indeed, the issue of aging with a spinal cord injury
is a complicated one. We need to approach it scientifically
to learn "what's what." Here the concept of longitudinal
research becomes important. Studying the same group
of people over time helps us to understand the interrelationships
of all of the issues described above and, most important,
to understand risk factors.
In fact, there has been a fair amount of longitudinal
aging research done. Thousands of people have been
studied over long periods of time to track changes
with age. Three well-known aging studies include
the Baltimore,2 Duke University,3 and Framingham4
studies. However, important as these studies have
been in expanding our knowledge of physiological
aging, the relationship between disease and aging,
or of risk factors for later impairments or morbidities,
they have not addressed the aging process as it
affects people with disabilities, particularly those
who have spinal cord injuries. None examines how
the normal aging that occurs in a body system impacts
the person aging with a superimposed spinal cord
Until very recently, there has been little research
particularly designed to study aging in people with
spinal cord injuries. One of the difficulties in
studying aging in this group is the wide degree
of variation that exists; depending on the neurologic
level itself or how severe the disability is, or
on the age and a range of other characteristics
of the survivor and his or her environment, outcomes
may be very different.
Thus, research has been needed which could focus
on uncovering common variations or risk factors
over time. One of the first attempts to conduct
such longitudinal research has taken place in Great
Britain under the leadership of the Rehabilitation
Research and Training Centre on Aging with Spinal
Cord Injury, Craig Hospital, Englewood, Colorado.
That team, funded by both the Centers for Disease
Control and Prevention and the U.S. Department of
Education's National Institute on Disability and
Rehabilitation Research, has been working with two
of the world's oldest SCI treatment facilities,
both located in England--the National Spinal Injuries
Centre at Stoke Mandeville Hospital, in Aylesbury,
and the Regional Spinal Injuries Centre, in Southport--to
track more than 800 individuals with long-term spinal
To date, three phases of the British study have
been completed, one in 1990, one in 1993, and one
in 1996. Analysis of the third phase is currently
underway. People selected for the study had injuries
which were traumatic and occurred over 25 years
ago. They had to be between 15 and 55 years old
at the time of the injury, thus eliminating children,
whose needs are very different from those of adults,
and older persons who were already well into the
aging process before their injuries occurred. To
be eligible for the study, participants had to have
lived, at the time of injury, in one of 13 specific
counties served by the two hospitals. This was to
ensure the most population-based sample possible.
Finally, participants also had to have been admitted
to one of the two spinal centers within 1 year of
injury and had to have survived for at least 1 year
following the injury. This was to exclude individuals
whose early hospital records may have been less
complete or who might not have received state-of-the-art
early care and to ensure that the research focused
on complications, problems, and even deaths that
were related to the aging process rather than to
the initial injury itself.
Eight hundred and thirty-four people were identified
who met all the selection criteria. As is still
typical of spinal cord injury demographics today,5
there were substantially more men than women--87
percent were men. Almost half of the participants--42
percent--had been injured in their late teens and
early twenties. The majority, however, were injured
between ages 25 and 34. Approximately two-thirds
of the participants had paraplegia, while a third
had tetraplegia--a distribution that probably reflects
differences in the survival outcomes of several
The spinal centre medical records were reviewed
for all eligible participants to identify a range
of variables, most importantly, a history--via documented
ICD9 codes6--of their health and medical issues
and complications. British vital statistics and
death records also were reviewed to identify those
who had died up to the time of the 1990 investigation.
Four hundred and twelve of the original eight hundred
and eighty-four people were known to be alive. Three
hundred and fifty-two were successfully contacted
in 1990 and 282--80 percent--agreed to participate
in an additional, ongoing study. They underwent
a physical examination, range of motion, sensory
and muscle testing, an electrocardiogram and chest
x-ray, complete blood and urinalysis, and vital
capacity assessment. They also completed lengthy
surveys about their perceived health and health
problems, and completed several psychometric instruments
designed to quantify well-being, life satisfaction
and quality of life. Three years later, 227 of these
returned and repeated the examination and evaluation
process. This time, measures of depression and perceived
stress were added and their spouses were interviewed
as well. What follows is an overview of the findings
of this comprehensive longitudinal study.
Death Rates and Causes
Death data were obtained by reviewing medical records
and by contacting Great Britain's Office of Population
Censuses and Surveys. These reviews established
that the British SCI survivors did have a higher
death rate than the general population. Twenty-
year-olds had a death rate (7.2 per 1,000) that
was eight times higher than their 20-year-old non
disabled counterparts (0.9 per 1,000). By age 70,
the death rate in the SCI population had increased
to 75.1 per 1,000. However, this was now only one
and one-half times higher than 70-year-olds in the
general population (50.2 per 1,000), indicating
a decreasing mortality ratio despite an increasing
mortality rate.7 This decreasing death ratio was
noticed both as survivors got older and the longer
they were hurt.
Among those of the 834 who had died prior to 1990,
problems with the kidneys and genitourinary system
were the most frequent causes of death, accounting
for just over 24 percent of all the deaths, a proportion
substantially greater than in the general population.
Cardiovascular-related problems were the second
leading cause of mortality, accounting for 23 percent
of all of the deaths. Included were heart attacks,
strokes, and other heart and circulatory complications.
Compared to the general population, death rates
for cardiovascular disease tended to be only slightly
higher;7 however, the deaths did appear to be occurring
at earlier ages.
Respiratory causes accounted for 14 percent of all
deaths and in all age groups the death rate from
respiratory illnesses was higher than in the general
population.7 The remaining causes of death--injuries,
cancer, septicaemia, and others--were relatively
Between 1990 and 1993 another 15 persons had died.
Their causes of death were similar to those of persons
who had died prior to 1990--cardiovascular disease,
pneumonia, septicaemia, cancer, and suicide. This
listing is very similar to what is reported by the
U.S. National SCI database,5 for individuals dying
5 or more years after their initial injuries.
The records of these 15 individuals were examined
to identify significant differences between them
while they were still living and the study participants
who had not died. Those who died did not differ
with respect to gender, length of injury, or severity
of their disability; however, they did consume more
alcohol, and those who were smokers had smoked longer--but
not more per day--than survivors who were current
smokers. Those who died had smaller lung capacities
when they were examined in 1990 and had more evidence
of severe hydronephrosis. When surveyed in 1990,
those who later died also were less independent,
got out and about the community less often, and
described themselves as generally less healthy than
other study participants. Interestingly, however,
they were less likely to have described the years
just before their death as the dreariest part of
Morbidity: Illnesses and
Data examining morbidity--illnesses, complications,
and medical problems--were collected from the personal
interviews, during physical examinations conducted
by an SCI-trained physician and via diagnostic and
laboratory tests. Most important, all medical records--from
the initial admission 20 or more years ago, to the
This yielded more than 27,000 diagnoses, operations,
or procedures at the 1990 assessment that occurred
at some point during the post injury lifetime of
study group members. Between 1990 and 1993, another
2,636 diagnoses or procedures were recorded.
Up until 1990, the most frequently occurring diagnosis
was pressure sores, with an annual incidence of
23.1 percent. Moreover, the incidence of pressure
sores increased with each 10-year increase in age
after age 30, but it decreased with more years post
injury. Contradictory as this appears, it seem to
suggest that older individuals who had been injured
shorter periods of time reported more sores than
younger people injured for longer times.
Urinary tract infection with clinical symptoms was
the second most frequent diagnosis, with an annual
incidence of 20 percent in the years prior to 1990.
Infections showed a dramatic increase in incidence
among those SCI survivors who were over age 60 and
a slight increase in frequency between the 10th
and 30th years post injury. There was no greater
incidence of urinary infections when comparing those
who had died with those still living. Between 1990
and 1993, these two leading diagnoses reversed themselves.
Urinary tract infections became the most prevalent,
followed by pressure sores.
While in the overall sample no other diagnosis came
close to the frequency of pressure sores and urinary
tract infections, there still were some patterns
that emerged when study participants were grouped
by injury severity, age, and duration of injury.
First, some conditions were associated with the
type of neurological injury. Persons with tetraplegia
were more likely to have problems with chest infections,
spasticity, perceived abdominal pain, and general
malaise than those with either paraplegia or very
incomplete injuries. They also had twice as many
procedures to remove bladder stones or catheter-related
procedures, and they accounted for the vast majority
of the many already reported urinary tract infections.
Those with paraplegia, on the other hand, reported
more musculoskeletal problems like joint pain and
stiffness, as well as more pressure sores, diarrhoea,
and constipation. Those with very incomplete injuries--most
of whom were ambulatory--tended to have problems
with fractures, cystitis, and motor and sensory
Second, there were conditions that were associated
with increasing age. These included operations of
the cardiac, internal, and nervous systems; pneumonia;
atelectasis; respiratory infections; kidney problems;
fainting; and headaches. There were also indications
that pressure sores were more closely related to
age than to how long the individual had been injured.
Finally, there were those conditions associated
with the duration of the disability rather than
age. These included a range of musculoskeletal problems,
as well as rectal abscesses and bleeding and genitourinary
problems among men.
During the 1990 data collection effort, these latter
two categories were analyzed together to identify
the problems in an important subgroup of study participants:
those who were both the oldest and the longest injured.
The people in this unique group experienced gastrointestinal
conditions such as digestive system operations,
diarrhoea or constipation, gastric disorders, and
nausea and vomiting. Genitourinary conditions such
as bladder or kidney stone removal, catheter procedures,
pyelonephritis, or renal failure also were apparent
in this subgroup. Other conditions that increased
in frequency with both age and years post injury
included infectious diseases, neoplasms, motor or
sensory loss, cardiovascular and respiratory conditions,
and fractures and dislocations.
Finally, in the study group as a whole, while pressure
sores and urinary tract infections proved to be
the most frequent complications at both data collection
points, there was one additional area of concern
of almost equal prevalence. Though not specifically
a medical diagnosis, functional decline or decreasing
physical independence was an adverse outcome of
long-term spinal cord injury that was documented
in 22 percent of this study sample. For this particular
investigation, functional decline had been defined
as at least a 1-hour increase per day in the amount
of assistance that was needed. Thus, the level of
independence prior to the study was less important
than the fact that there had been an increased need.
One-quarter of all those whose needs for help had
increased blamed fatigue and weakness. Another 25
percent related this to specific medical problems.
Eighteen percent identified pain and stiffness,
14 percent attributed the increased need for help
to other injuries and age. Only 5 percent blamed
weight gain for their needing more help--despite
the fact that almost 40 percent of the 62 individuals
said weight gains had made it harder for them to
perform their activities of daily living.8
As a group, those needing more help were significantly
more likely to have voiced complaints of shoulder
pain, weight gain, and recent postural changes,
such as scoliosis. Overall, though, it was age that
was most strongly associated with the need for more
help. Those who needed more assistance were an average
of 6 years older than those who weren't requiring
For those with paraplegia, transfers to and from
the wheelchair posed the biggest problem as help
needs escalated. Participants with tetraplegia,
on the other hand, tended to need extra help with
mobility first, then with transfers.8
Indications are that physical independence decreased
further between 1990 and 1993. This was detected
by a change in participants' scores on CHART (the
Craig Handicap Assessment and Reporting Tool), an
instrument that measures community integration in
five areas: mobility, occupation, social integration,
economic self-sufficiency, and physical independence.9
Scores also had declined in the area of social integration,
which measures the extent to which individuals are
socially involved and interacting with others around
General Health and Life
Findings that describe only increasing medical and
functional complaints, however, don't tell the whole
story. Despite the large number of reported complications
and the presence of functional decline, many people
seemingly were maintaining good health. In 1990,
more than 75 percent reported feeling generally
healthy. Over the following 3 years, their perceptions
of their overall health actually may have improved,
for when resurveyed in 1993, even more--89 percent--said
they felt healthy. Their age, length of time post
injury, or neurological status did not significantly
affect these percentages one way or the other. Only
one subgroup reported a worsening of general health
between 1990 and 1993: those who had been injured
40 or more years.
Secondly, despite all of their medical complaints
and documented diagnoses, individuals were satisfied
with their lives. In response to the most straightforward
question asked--"Rate your quality of life as: very
poor, poor, fair, good or excellent"--74 percent
said it was either good or excellent. Moreover,
there were indications that this represented an
improvement over time:
Only 56 percent imagined they would have considered
their quality of life to be good or excellent 20
years ago, before the study was done.
The number of people considering their quality of
life to be poor or very poor had dropped. Twenty-four
percent said they would have rated their quality
of life either poor or very poor 20 years ago, while
only 4 percent rated it similarly at the time the
study was done in 1990. Indeed, the only study participants
who said their quality of life was getting worse
were people who had been hurt more than 30 years.
In general, perceived health and quality of life
were related. Overall, those who reported generally
good health also tended to have scored higher on
the various measures of perceived quality of life,
life satisfaction, and well-being, and they generally
scored lower on measures of perceived stress and
depression. Nonetheless, in the group as a whole,
there were some decreases over time. Life Satisfaction
Index scores,10 for example, had decreased between
1990 and 1993. Perceptions of well-being also declined
slightly during the 3-year period, reflected by
participants' increasing complaints of feeling bored,
lonesome, and restless, as documented on the Index
of Psychological Well-being.11
Time, however, seemed to have a positive effect
on stress. When queried in 1993, it was those study
participants who were oldest and who were injured
longest who reported the least stress, while those
with the most severe disabilities or the most neurological
involvement reported the most stress. Nonetheless,
as a group, the SCI participants reported less stress--particularly
nervousness and feelings of being unable to cope--than
their non disabled spouses, who completed the same
instrument, the Perceived Stress Scale,12 in 1993.
And, as reflected by scores on the Centre for Epidemiologic
Studies Depression Scale,13 depression scores were
lowest in those who had been injured the longest.
And, once again, when compared with their non disabled
partners, the SCI survivors in general reported
less depressive symptoms.
Finally, in terms of their needs and priorities,
as measured by the Quality of Life and Individual
Needs Questionnaire,14 the group reported that their
relationships with their families and their need
for learning had grown increasingly important to
Tying It All Together:
Identifying Risk Factors
In an attempt to predict various outcomes of long-term
spinal cord injury, all of the already described
data were used to develop risk models for the study
sample. Working with consumers, health professionals,
and other experts in the field, several outcomes--such
as pressure sores, shoulder pain, or decreasing
life satisfaction--were identified. For each, potential
predictors of these outcomes also were identified.
For example: obesity and age were examined as possible
predictors for pressure sores; duration of injury,
economic status, and depression were considered
as some of the potential predictors of decreasing
Then, in each case, findings from 1990--diagnoses,
scores on the various psychosocial instruments,
responses to survey questions, and other collected
data--were examined with respect to specific medical,
functional, and psychosocial outcomes or problems
that appeared in 1993. Two regression techniques
were used--logistic regression for dichotomous outcomes,
such as those which measured the presence or absence
of a condition, and linear regression for continuous
outcomes, such as those typical of the various psychosocial
instruments on which a wide range of scores were
possible. Each was used, as appropriate, to predict
an individual's risk of a given outcome, based on
factors that were present 3 years earlier. A few
of the risk factors that were identified are described
Pressure Sores: Several characteristics placed SCI
survivors at risk for pressure sores:
Participants with paraplegia were more likely to
have pressure sores than other SCI survivors.
Those with an existing pressure sore--anywhere and
of any severity--were also more likely to have a
new sore in 1993.
Study participants with abnormal pulses in the feet
and lower extremities in 1990 had a three times
greater risk of pressure sores later.
Those who did not work had more pressure sores in
1993 than those who were working in 1990.
Upper Extremity Pain
Arm and shoulder pain in 1993 also was somewhat
Those who had lower scores on the tests for psychosocial
well-being reported more upper extremity pain 3
Previous complaints of upper extremity pain more
than doubled the chances of having upper extremity
pain in 1993.
Limitations in range of motion also more than doubled
the likelihood of upper extremity pain 3 years later.
Several characteristics predicted more satisfaction
with life, as measured by the Life Satisfaction
Those with the highest life satisfaction in 1993
tended to be younger, had better psychological well-being,
and were somewhat better off financially.
As a group, those who reported being the most satisfied
with their lives in 1993 were more involved socially
in 1990, had reported less fatigue, and were less
likely to be overweight.
Decreased Physical Independence
Among paraplegics, greater age predicted declines
Previous changes in the durable medical equipment
they used were associated with less independence
Having an indwelling catheter, or having had to
change from the bladder management program they
had used initially predicted declining function
Finally, paraplegics who had reported fatigue 3
years earlier were less able to function independently.
A range of symptoms and signs predicted fatigue:
People with fatigue in 1993 were more likely to
have reported fatigue in 1990 also, and they had
lower blood pressure in 1990.
Participants with poorer perceived health--those
who said they did not feel generally healthy in
1990--and who had scored more poorly on psychosocial
well-being tests were more likely to report fatigue
In conclusion, the goal of this Rehabilitation Research
and Training Centre on Aging with Spinal Cord Injury
is to identify problems that accompany aging with
a spinal cord injury, to describe their impact and
their characteristics, and to explain the characteristics
of those who experience them. Findings that are
useful to clinicians working with aging SCI survivors
can already be found in even this preliminary research.
For example, this research suggests that:
Many of the same risks non disabled people face
are equally important--or more important--for SCI
survivors. The incidence of cardiovascular problems,
for example, is very similar, while the risk for
overuse injuries among people with spinal cord injuries
may be far greater. Although these data indeed indicate
that such injuries are a severe problem, they do
not address the breadth of the risk--a risk that
results from decades of making incredible weight-bearing
demands on shoulders, elbows, and wrists.
Certain conditions are associated more with age,
others with length of injury. For example, pressure
sores and respiratory problems appear to be more
of an issue with increasing age. This knowledge
that older individuals, even if not long-injured,
are most at risk may help clinicians intervene before
problems do occur. Similarly, the finding that musculoskeletal
problems are associated more with longer durations
of injury than with age helps clinicians anticipate
and target other needed interventions.
Issues, characteristics, and behaviours at one point
in time that predict adverse outcomes at a later
point in time are vital fodder for prevention. Even
those that seem obvious--such as pressure sores
or upper extremity pain in 1990 predicting the same
problems in 1993--tell us that these problems do
not just go away on their own. Interventions or
behavioural changes are needed if the ongoing cycle
is to be broken.
These research findings tell us that life satisfaction
and quality of life are vital concepts. Neither
is totally dependent upon the level or severity
of the disability or on the number of medical complications,
yet each seems to be very important as a predictor
of future outcomes. Another seemingly vague concept--fatigue--appears
to be an equally important predictor of future problems.
Clearly, clinical complaints of fatigue--as well
as depression, or decreased life satisfaction--should
not go unaddressed. Unacknowledged and untreated,
they may well lead to costly and compromising complications.
Finally, these findings--particularly those relating
to quality of life--tell us that aging is not the
entirely negative process that many people believe
it to be. These data show, despite the appearance
of a host of potential problems and health complications,
that it is not as bad as many people imagine. Those
who are in the midst of this previously unstudied
process called aging with a spinal cord injury are
feeling pretty good. They are happy with their lives
and are glad to be alive.
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Kenneth A. Gerhart, M.S.
Susan W. Charlifue, M.A.
Robert R. Menter, M.D.
David A. Weitzenkamp, B.A.
Gale G. Whiteneck, Ph.D.
Mr. Gerhart is Director of Training, Ms. Charlifue
is Research Manager, Dr. Menter is Principal Investigator,
Mr. Weitzenkamp is Research Assistant and Analyst,
and Dr. Whiteneck is Director of Research at The
Rehabilitation & Research Center on Aging with Spinal
Cord Injury, Craig Hospital, Englewood, Colorado