JOURNAL OF NEUROTRAUMA
Volume 21, Number 10, 2004
© Mary Ann Liebert, Inc.
Pp. 1371–1383

Targeting Recovery: Priorities of the Spinal
Cord-Injured Population
KIM D. ANDERSONABSTRACTIn the United States alone, there are more than 200,000 individuals living with a chronic spinal cord
injury (SCI). Healthcare for these individuals creates a significant economic burden for the country, not to mention the physiological, psychological, and social suffering these people endure everyday. Regaining partial function can lead to greater independence, thereby improving quality of life.
To ascertain what functions are most important to the SCI population, in regard to enhancing quality of life, a novel survey was performed in which subjects were asked to rank seven functions inorder of importance to their quality of life. The survey was distributed via email, postal mail, theinternet, interview, and word of mouth to the SCI community at large. A total of 681 responses werecompleted. Regaining arm and hand function was most important to quadriplegics, while regaining
sexual function was the highest priority for paraplegics. Improving bladder and bowel function wasof shared importance to both injury groups. A longitudinal analysis revealed only slight differences
between individuals injured 3 years compared to those injured 3 years. The majority of participants indicated that exercise was important to functional recovery, yet more than half either did
not have access to exercise or did not have access to a trained therapist to oversee that exercise. In
order to improve the relevance of research in this area, the concerns of the SCI population must be
better known and taken into account. This approach is consistent with and emphasized by the new
NIH roadmap to discovery.
Key words: bladder, bowel, and sexual dysfunction; consumer preferences; quality of life; spinal cord
injuryINTRODUCTIONCHRONIC PARALYSIS of all forms, not just traumatic

spinal cord injury (SCI), is a longterm health, economic, and social issue worldwide (National Spinal Cord
Injury Database, 2001; Dijkers et al., 2000). Currently,
scientists are pressured on many fronts to develop an all
encompassing “cure” for paralysis. The complexity ofsuch an “all or nothing” approach is rather daunting,however. While the scientific understanding of central
nervous system (CNS) regeneration has advanced greatly
in the past twenty years, there are still many unknowns
with regard to inducing successful regeneration, especially in the chronic SCI state (Filbin, 2003; Houle andTessler, 2003; Blight, 2002; Hulsebosch, 2002; Kwon etal., 2002). A more realistic approach, if we are interested

Reeve-Irvine Research Center, Department of Anatomy and Neurobiology, University of California at Irvine, Irvine, California.

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ANDERSONin improving the quality of life of a large proportion of
the paralyzed population in a more expedient time frame,
may be to develop treatments that lead to partial functional recovery. It is important to stress that the ultimate
goal is, and should be, to “cure” paralysis, and to emphasize that treatments leading to incremental (partial)
functional recovery does not take away from that goal
but rather may offer a more practical and efficient path
towards it.
The research field can objectively address the physiological dysfunctions associated with SCI and develop
clinical treatments that yield increments of functional return that will have a profound impact on the quality oflife. There are, however, differences between the humanand animal SCI condition (Sipski, 2003; Carlson and
Gorden, 2002; Tator, 1998). A good way to learn and understand more about these differences is to collect information from the human SCI population. By learningwhich issues are clinically significant, the scientific community can more effectively translate promising animalstudies into carefully designed clinical trials with the goalof developing treatments that will improve dysfunctions
and enhance the quality of life of a significant proportion of people living with SCI.
Previous studies have assessed the quality of life andpreferences of different groups of the SCI population. In
2002, Tate et al. performed a comprehensive review ofmultiple such studies. Not surprisingly, people with SCI
tended to report a lower quality of life than non-disabledindividuals. Many of those studies indicated that factors
such as access to the community, marriage, social support, and community integration have a profound impact
on quality of life. Very few studies, however, have asked
people with SCI what would improve their quality of life.
Estores (2003) reviewed six studies and found that bladder and bowel function, sexual function, pain, and mobility were important concerns to the SCI population. In
addition, Widerstrom-Noga et al. (1999) demonstrated
that the above mentioned dysfunctions were perceived asdifficult to deal with by persons with SCI. However, no
studies could be found by the author in which people withSCI were asked how basic science research could impact
their quality of life. This is a very important question inlight of the multiple advances being made in animal SCI
research leading to regenerative sprouting and functional
recovery.
Therefore, the present study was undertaken to determine what areas of functional recovery the SCI population would most like researchers to address in order tohave a positive effect on their quality of life in the near
future. The data presented here demonstrate that the
spinal cord injured population is interested in incrementsof functional recovery in a number of important domains,depending on the injury level and with the understanding that full functional recovery is the most desired outcome.

MATERIALS AND METHODS
Survey Design
The survey questions (Table 1) were designed to determine which areas of functional recovery were mostimportant to the SCI community. There were multiple
reasons for the format of this novel questionnaire. First,
the questions were intentionally designed to be short andsimple so as to increase the number of participants. Second, this study was undertaken to determine which physiological functions were important to improving the quality of life of the SCI population in general. Thus, theseven categories of functional recovery to be ranked wereintentionally kept broad so as to be inclusive rather than
exclusive. For example, “arm/hand function” implied any
recovered function of the shoulder, upper arm, lower arm,
wrist, or fingers. Regaining “bladder/bowel function”
was combined with the “elimination of dysreflexia.”
Though these may seem like two very different ideas, one
being a gain of function and the other being a loss offunction, to a person living with SCI these issues are often inseparable. For example, if one were to eliminate thedevelopment of dysreflexia during a bowel movement but
not improve function in the bowels (either voluntary or
involuntary), this would still be considered an improvement in quality of life. The same concept holds true forthe “elimination of chronic pain.” For even though thatis not a gain of function, the loss of aberrant sensation
would have a dramatic improvement in the quality of life.
“Walking movement” included any type of movement of
the lower extremities, such as walking or standing withor without assistive devices, body-weight supported
treadmill locomotion, or swimming pool based exercise.
The term “walking” alone was not used in order to prevent “walking” being equated with “cure,” which is acommon, yet understandable, misconception by a small
number of people living with SCI who may not understand the complexities underlying regeneration or who,
more importantly, do not have the opportunity to interact with scientists in order to learn more about research.
In regard to this latter statement, the author firmly believes that the scientific community has a responsibility
to educate the public about SCI research and at the sametime take the opportunity to learn from the people livingwith SCI about what is truly important to improving thequality of life. By doing so, basic scientists may develop
outcome measures that are more relevant to the prioritiesof the consumers.

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TARGETING RECOVERY: PRIORITIES OF THE SCI POPULATIONTABLE 1. SURVEY QUESTIONNAIRE
1. What level is your spinal cord injury and what year did it occur?
2. What gain of function would dramatically improve your life?
Rank the following functional recovery in order of importance to you, 1 being most important and 7 being least important:A) arm/hand functionB) upper body/trunk strength and balanceC) bladder/bowel function, elimination of Dysreflexia
D) sexual functionE) elimination of chronic painF) normal sensationG) walking movement
3. Do you think exercise rehabilitation is an important aspect of regaining function?
4. Do you currently have access to any exercise rehabilitation? Describe.
5. Name:Address:
Phone:
Email:
Age:
6. Any further comments or suggestions.
The questionnaire was distributed via email, postal mail, the internet, and word of mouth throughout the SCI community. The categories of functional recovery were designed to be broad and inclusive, rather than narrow and exclusive.

The seven categories were chosen based on consumer
feedback, empirical evidence, and categories predominantly used in the literature (Estores, 2003; Cohen andMarino, 2000; Widerstrom-Noga et al., 1999). The study
was approved by the University of California Irvine Institutional Review Board and all guidelines regarding human subjects were followed. Attached to the survey was
an introductory statement explaining the purpose of thesurvey, directions for participating, the right to privacy,
what the results were to be used for, and that the scientist conducting the survey also had a spinal cord injury.
This information served as the informed consent statement, as required by the Institutional Review Board.

of the spinal cord was included in the study with the exception of minors, prisoners, and adults with cognitive
impairments or who were medically incapacitated/likely
to need “surrogate” consent. Individuals were given theoption of participating anonymously. Both complete andincomplete injuries were included. This was done because participants were unlikely to know the true completeness of their injury, especially those individuals diagnosed prior to the time when the American Spinal
Injury Association (ASIA) classification scale was developed (Ditunno, 1992), refined (Maynard et al., 1997),
and widely implemented.

Participant Recruitment
Dissemination of the survey was performed by creating links with various disability websites, support groups,
and magazines via the Internet and postal mail (including 360mag, National Center on Physical Activity andDisability, National Spinal Cord Injury Association, New
Mobility, Paralysis Resource Center, Paralyzed Veteransof America, Paraplegia News, Spinal Injuries Association, United People With Disabilities, When You NeedGroup Support) and by word of mouth throughout the
SCI community (e.g., email, personal interview). Any individual with an injury that was defined to a specific level

RESULTS
Demographics
There were a total of 774 respondents, of which 93
were unusable, for a final number of 681 participants.
The unusable respondents returned the survey either
without providing a specific injury level or ranked thecategories in a non-consecutive manner. Of the usable
participants, 51% were quadriplegic and 49% were paraplegic. In addition, 25% were female, 65% male, and 10%
chose to participate anonymously with regard to sex.

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Importance of Arm/Hand Function to
Quadriplegic Quality of LifeA

To most appropriately assess the priorities of the SCI
population, the responses were grouped into quadriplegics and paraplegics. For quadriplegics, as shown in
Figure 1A, 48.7% of the participants indicated that regaining arm and hand function would most improvetheir quality of life and another 11.5% ranked increased
upper body/trunk strength and balance as most important. Thirteen percent ranked sexual function to be thepriority while 8.9% regarded bladder/bowel function
and the elimination of autonomic dysreflexia to be more
important. The latter is a life-threatening condition defined by a sudden and severe increase in blood pressure
and simultaneous decrease in heart rate induced by anoxious stimulus below the level of injury; individuals
with a T6 injury or above are at risk of developing autonomic dysreflexia. Regaining walking movement was
the highest priority to only 7.8%, followed by regaining normal sensation (6.1%), and eliminating chronic
pain (4%).

B

Importance of Sexual Function to Paraplegic
Quality of LifeFor the paraplegic participants, 26.7% ranked regaining sexual function to be the most important to quality of life (Fig. 1B). This was followed by improving
bladder/bowel function and eliminating autonomic dysreflexia (18%) and increasing upper body/trunk strengthand balance (16.5%). Regaining walking movement was
ranked higher by paraplegics (15.9%) than by quadriplegics (see above), as was eliminating chronic pain(12%). Regaining normal sensation (7.5%) and improving arm/hand function (3.3%) were regarded as theleast important to improving the quality of life of paraplegics.

Both Quadriplegics and Paraplegics Share
Similar Priorities When Ranking Bladder/Bowel
and Sexual Function as the First or Second Most
Important Factor Affecting Quality of Life
Similar priorities were chosen by quadriplegics andparaplegics when the first and second ranked functions
were combined. To perform this analysis, the number ofpeople (quadriplegics and paraplegics were analyzed separately) who ranked a particular function as the first priority were combined with the number of people who
ranked that same function as the second priority. Becauseof the differences in the most important recovered function indicated by quadriplegics versus paraplegics

FIG. 1. A representation of the areas of functional recovery
ranked as the highest priority to quadriplegics (A) and paraplegics (B). Percent response is the percentage of individuals
ranking that function as being most important to improving their
quality of life.

(arm/hand function versus sexual function), this analysis
was performed in order to assess functions that were important to both groups. Regaining bladder/bowel functionand eliminating autonomic dysreflexia was the first or
second highest priority for 39.7% of quadriplegics and
38% of paraplegics (Fig. 2). Similarly, regaining sexualfunction was the first or second highest priority to 28.3%
of quadriplegics and 45.5% of paraplegics. Regaining
walking movement, however, was ranked differently between the two groups, with 14.2% of quadriplegics and38.1% of paraplegics ranking it as the first or second mostimportant function to improve quality of life.

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TARGETING RECOVERY: PRIORITIES OF THE SCI POPULATION
portant to male paraplegics (7.4%) than females (3.3%).
The most striking difference, however, was that walking
movement was more important to male paraplegics(18.7%) than to female paraplegics (9.8%), male quadriplegics (8.7%), or female quadriplegics (5.1%). One musttake into consideration, however, with respect to the gender differences presented here, that the sample size formales was roughly three times greater than that for females.

Does the Importance of Recovering Different
Functions Change with Time Post-Injury?

FIG. 2. Shared priorities of quadriplegics and paraplegics.
The percentage of individuals that ranked regaining bladder/bowel function as the first or second most important function
to improving quality of life were combined. The same was done
for those individuals ranking sexual function or walking movement as the first or second most important function.

Of the total population, regaining some level of bladder/bowel function, sexual function, elimination of pain,
or normal sensation was the highest priority to 47.8%
combined. For the paraplegic population specifically, thiswas 64.3%.

In order to assess whether or not priorities changed
with increased time post-injury, a simple longitudinal
analysis was performed. Of the 681 participants, 630 provided the year they were injured. These 630 were separated into two groups, those injured between 2000 and2003 (“0–3 years post-injury”; 76 quadriplegics and 78
paraplegics) and those injured prior to 2000 (“3 years
post-injury”; 248 quadriplegics and 228 paraplegics). The
separation into groups with these time frames is similar
to groupings used in another study (Livneh and Martz,
2003). Figure 4A shows the highest priorities for quadriplegics in both of these groups. Regaining arm and handfunction was the highest priority regardless of time postinjury. Regaining walking movement was slightly more

Slight Priority Differences Based on Gender
To explore the possibility that females and males may
have different priorities regarding recovered function, thedata were separated into the following four groups basedon the 616 participants who provided gender identification: female quadriplegics (n  79), female paraplegics(n  92), male quadriplegics (n  242), and male paraplegics (n  203). The function most important to improving the quality of life was determined for each group.
As demonstrated in Figure 3, female and male quadriplegics shared very similar priorities, with regaining
arm/hand function still being the most important, 53.2%
and 48.3%, respectively. One slight difference was thatrecovering upper body strength and trunk stability was
more important to female quadriplegics (13.9%) thanmale quadriplegics (9.5%). Female and male paraplegics
also shared similar priorities, but with a few interesting
differences. Regaining sexual function remained thehighest priority to paraplegics, but was slightly more important to females (30.4%) than males (23.1%). Conversely, recovering normal sensation was a bit more im-

FIG. 3. Slight differences based on gender. Participants who
provided gender identification (616 of 681) were separated into
four groups: female quadriplegics (79), female paraplegics (92),male quadriplegics (242), and male paraplegics (203). The functions ranked as highest priority to improving quality of life foreach of the groups are represented as percent response.

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FIG. 4. Longitudinal analysis. Participants who provided their year of injury (630 of the 681) were broken up into two groups:
those injured between 2000 and 2003 were designated as 0–3 years post-injury, and those injured prior to 2000 were designatedas 3 years post-injury. The functions ranked as highest priority to improving quality of life for each of the groups are represented for quadriplegics (A) and paraplegics (B).

important to individuals injured 3 years (11.8%) compared to those injured for longer than 3 years (6.5%).
Eliminating chronic pain was not a priority to quads injured 3 years (0%), but became increasingly important
to improving quality of life after 3 years (5.2%).
Figure 4B demonstrates that regaining sexual function
was most important to the quality of life of paraplegics
regardless of the time post-injury. Regaining walking
movement was not significantly influenced by time after
injury. Importantly, however, eliminating chronic pain
and regaining normal sensation were ranked much higher
by individuals injured longer than 3 years (12.3% and9.6%, respectively) compared to those injured shorter
than 3 years (9% and 3.8%, respectively). Improving upper body/trunk strength and balance was more importantto the quality of life of those injured 3 years (25.6%)
than those injured more than 3 years (14.9%).

Access to Exercise Rehabilitation
The final topic assessed was to determine if individuals
with SCI think exercise rehabilitation is important to functional recovery and, if so, whether or not they have accessto such exercise. As shown in Table 2, 96.5% of all the1376

TARGETING RECOVERY: PRIORITIES OF THE SCI POPULATIONTABLE 2. ACCESS TO EXERCISE REHABILITATIONIs exercise important tofunctional recovery?

Currently have accessto exercise?

No
Yes

—
Unknown
No
Yes

3.5%
96.5%

24.2%
18.9%
56.9%

With or without atrained therapist?
———
Without
Without

12.2%
44.7%

The percentage of individuals stating that exercise was important to functional recovery was further broken down into those who did or did not have access to exercise and whether that exercise wasoverseen by a trained therapist. This information was taken from detailed descriptions provided by
the participants.

participants indicate that they consider exercise to be an
important aspect of functional recovery. Of this 96.5%,
18.9% did not currently have access to exercise, 56.9% did
have access, and 24.2% did not indicate either way. To
further analyze the basic type of exercise described bythose individuals that had access to exercise, the description provided by each individual was retrospectively categorized as either exercising on their own, typically athome, or being overseen by a trained therapist (physicaltherapist), typically in an outpatient setting. Of the 56.9%
that did have access to exercise, only 12.2% had access toa trained therapist. The remaining 44.7% exercised on theirown, with a variety of exercise equipment. Thus, a totalof at least 63.6% (44.7% exercising on their own plus
18.9% without any access to exercise) did not have accessto a trained therapist to oversee their exercise regiment.

DISCUSSION
The data from this survey demonstrate the preferencesof the spinal cord injured community in terms of the importance of regaining partial functional recovery to thequality of life. The return of arm and hand function wasby far the highest priority to quadriplegics. For paraplegics, the most desired improvement was sexual function. Regaining bladder and bowel function and eliminating autonomic dysreflexia was of similar importanceto both injury populations when analyzed as a combination of the first and second priorities. Finally, the overwhelming majority of all participants regarded exercise
as an important aspect of functional recovery, yet morethan half of these individuals did not have access to a
trained therapist to guide proper exercise.

Unintentional Exclusion or Selection Bias
The National Spinal Cord Injury Database (2001) reports the percentage of quadriplegics at 51.6 and para-

plegics at 46.3 (with this information being unavailable
for 1.4% and the remaining 0.7% experiencing recovery
prior to discharge). A similar distribution was reflectedin the present survey, with 51% quadriplegics and 49%
paraplegics. With regard to gender, the nationally reported 4 to 1 ratio of male to female was similarly represented here (25% female and 65% male), although 10%
chose to remain anonymous. Thus, despite the fact thatparticipant recruitment was not randomized, the demographics of the current study reflect the statistics reported
for SCI in the United States. In addition, the high number of participants (681) is sufficient to result in meaningful data.
One caveat of the dissemination method was that the
number of individuals who looked at the survey on the
web and decided not to participate could not be determined. However, two things were observed during thestudy that led to increased participation. First, not only
was the short and simple nature of the survey design relevant, but having direct access to it on the internet removed the requirement/barrier of having to respond via
mail, telephone, or in person, all of which are more difficult for a spinal cord injured individual. In support of
the use of the internet, a study by Edwards et al. (2002)
demonstrated that individuals with SCI were interested
in receiving information about research and that the internet was the most preferable method by which to gain
access to such information, as opposed to receiving
newsletters or attending seminars. Second, the fact thatthe author is a scientist with a spinal cord injury proved
to be an important quality when individuals chose to participate, based on the existence of a common bond.
There is the possibility that the wording and dissemination methods of the survey may have resulted in unintentional exclusion or selection bias. One category unintentionally left off the survey was respiratory capacity.
However, only 70 of the 347 quadriplegic participants
had an injury between C1–C4. It may be that this popu-

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lation was hard to gain access to via the dissemination
methods used because of their extremely limited mobility and independence. It is clearly recognized and acknowledged by the author, however, that improvements
in respiration and the elimination of ventilator-dependence are extremely important to the quality of life, andthis topic should be at the forefront of research.
Finally, the population over 40 years of age may notuse email or the internet as widely as the population under 40. This could have resulted in selection bias. However, 297 of the participants responded via postal mail,personal interview, or telephone interview. The remaining 384 individuals participated via the survey website.
Thus, the distribution was approximately 50% from theinternet and 50% from non-internet sources.

Relevance of the Areas of Functional Recovery
Surveyed to Basic Science
Not surprisingly, regaining arm and hand function was
the most desired function for quadriplegics. This is consistent with the fact that recovering even partial arm andhand function can have an enormous impact on independence. This finding is similar to previous studies
demonstrating that increased independence enhances thequality of life of individuals with SCI (Francischini et al.,
2003; Wuolle et al., 2003; Waters et al., 1996; Mulcahey
et al., 1994). This need highlights the importance of including cervical injury models and to implement multiple, sensitive forearm and forepaw behavioral tests inthese animal models. These injury models and behavioral
tests should be modeled in a manner that will be translationally relevant to humans so that future treatments tobe tested clinically can draw as much information as possible from the basic science field. To aid the development of translationally relevant models and outcome
measures, basic science departments are encouraged tofoster dialogue with clinical departments having expertise with human SCI, in addition to promoting interactions with people in the community living with SCI.
Although the concentration on thoracic injury models
has been justified by their greater practical simplicity,
this does not outweigh the significance of understanding
more about the normal responses to cervical injury andthe possibilities for therapeutic intervention in this very
different situation. For example, the study of neuroprotection after acute SCI could lead to greater levels of detectable, quantifiable functional sparing in cervical injuries compared to thoracic. Regarding chronic SCI,
sprouting or regeneration across a short distance may result in functional recovery that is more easily detected
and more clinically beneficial when using cervical injury
models. Thus, although cervical injury models can be

more complicated and risky, we, as basic scientists, havea responsibility to address these difficulties if we are toattempt to meet the needs of our consumers.
The majority of paraplegic participants regarded sexual function to be most important to improving the quality of life. Sexual issues affecting men with SCI particularly focus on dysfunctions regarding erection andejaculation (Hubscher and Johnson, 2000, 1999; BieringSorensen and Sonksen, 2001). Impaired sexual arousal
and orgasm are problems for women with SCI (Jackson
and Wadley, 1999; Sipski et al., 1997, 1995a, 1995b; Sipski and Alexander, 1993). In addition, the possibility of
bladder and bowel accidents stimulated by sexual intercourse is an area of great concern to women (White etal., 1993), yet little research can be found addressing thisissue. The development of autonomic dysreflexia during
genital stimulation is a risk faced by both men andwomen, especially for men using penile vibrostimulation
to induce ejaculation (Howards et al., 2002; Brackett etal., 1998; Sansone et al., 1997). Clearly, sexual functionis adversely impacted by SCI and expanded research in
the entirety of this area, not just limited to fertility purposes, can lead to treatments that profoundly improve thequality of life of affected individuals. Sexual dysfunction
may be difficult to address in animal models and it may
be that new models need to be developed. This is an excellent example wherein interactions between clinicians,
basic scientists, and individuals with SCI (each sharing
their own expertise) could lead to the development oftranslationally relevant research. As the majority of individuals with SCI become injured during early adulthood, and as advances in medicine continue to increase
the lifespan of those individuals, it is imperative that thissubject not be dismissed or merely considered a luxury
for those individuals living with paralysis.
The importance of recovering bladder and bowel function is a shared priority to quadriplegics and paraplegics.
Until recently, renal failure was the leading cause of deathfor people with SCI (National SCI Database, 2001). Despite medical advances in urologic management, bladderand bowel dysfunctions continue to adversely impact
daily life (Benevento and Sipski, 2002). Most individuals have one of three options for bladder management(indwelling catheter, external catheter [for men], or intermittent catheterization), each with its own advantages
and disadvantages. Autonomic dysreflexia, which can betriggered by distension of both the bladder and bowel, isa life-threatening situation for individuals with spinal injury at T6 or above (Karlsson, 1999). In addition, constant spasticity of the bladder wall can induce persistent,
mild dysreflexia symptoms, which are very disruptive todaily functioning unless medicated, often with an anticholinergic drug (Burns et al., 2001). The problems as-1378

TARGETING RECOVERY: PRIORITIES OF THE SCI POPULATION
sociated with neurogenic bowel can severely influence
the quality of life on a daily basis (Kirk et al., 1997; Stiens
et al., 1997). It can take months to years for a person with
SCI to develop a reliable, effective bowel routine. The
amount of time required to perform a bowel movement
can vary from person to person and even from day to day
within the same person. Having bowel accidents is not
only physically uncomfortable, but also socially humiliating. For those individuals whose injury severity requires another person to conduct their bowel management, there are multiple physical, psychological, andsocial humiliations to be endured. These issues, in addition to the impairments in sexual function describedabove, warrant intensive investigation into the underlying mechanisms of autonomic dysfunctions after SCI and
the imperative need for developing treatments for those
dysfunctions. Anything that can be done to increase function and independence regarding bladder and bowel function will be a great advance in medical science.
Interestingly, eliminating chronic pain was not a priority to quads injured 3 years (0%), but becomes increasingly important to improving quality of life after 3
years (5.2%). A similar trend was evident for paraplegics(9% of those injured 3 years and 12.3% of those injured 3 years). In addition, chronic pain was of higher
concern to paraplegics than quadriplegics in this study,
both females and males. For individuals who experiencechronic pain, this can be the most devastating complication of SCI (Widerstrom-Noga and Turk, 2003; Eaton,
2003; Hulsebosch, 2002; Burchiel and Hsu, 2001; Siddall and Loeser, 2001). Recent evidence suggests that
there may be a relationship between chronic pain and autonomic dysreflexia in persons with chronic cervical SCI(Widerstrom-Noga et al., 2004). There are multiple typesof drugs used to treat chronic pain, but none are completely effective in eliminating the problem (Burchiel andHsu, 2001). The onset and evolution of chronic pain after SCI is not yet fully understood and requires continued, extensive study in both the laboratory and clinicalsettings.
Another aspect that must be addressed in the laboratory and clinical setting is longterm exercise for chronic
SCI. There are some studies demonstrating the benefitsof longterm exercise in humans with SCI (Ditor et al.,
2003; Hicks et al., 2003; Nash et al., 2002; Jacobs et al.,2002, 2001). Recent studies in animal models have shown
exercise to have a positive effect on outcome after SCI(Van Meeteren et al., 2003; Lankhorst et al., 2001;
Dupont-Versteegden et al., 2000, 1998). Clearly, exercise is likely to be beneficial to the outcome of SCI. However, the results of the current study indicate that only
12.2% of the participants who had access to long-term
exercise were supervised by a trained therapist. Asidefrom the already known benefits of exercise to overall
health, the lack of access to exercise and therapists toguide this exercise will be a problem if clinical treatments
are developed for chronic SCI which require the reversal of muscle atrophy, for example, in order for benefitsof the treatment to be detectable.
One area of research that warrants discussion is thatof functional electrical stimulation (FES), for here many
advances have been made in regard to restoring functional independence and, as technology increases, the potential for improving the quality of life of many individuals with SCI will also increase. Most notably, FES has
been used for many years to reduce muscle atrophy andinduce standing and walking ability (Postans et al., 2004;
Agarwal et al., 2003a; Jacobs and Mahoney, 2002;
Mirbagheri et al., 2002; Field-Fote, 2001; Brissot et al.,
2000; Ladouceur and Barbeau, 2000; Wieler et al., 1999;
Klose et al., 1997; Moynahan et al., 1996) and consumers
have been satisfied with the outcomes (Agarwal et al.,2003b; Brown-Triolo et al., 2002; Kilgore et al., 2001).
There are many other applications, however. FES has
been used extensively to restore bladder and bowel control (Vastenholt et al., 2003; Creasey et al., 2001a; Egon,
1998; Brindley, 1994; Van Kerrebroeck et al., 1993;
Brindley et al., 1982) and has been shown to reduce thelong-term economic consequences of bladder and bowel
management (Creasey et al., 2001b). Though the performance of a posterior sacral rhizotomy is an important
drawback to consider, and a source of controversy, future advances may lead to the use of FES as a more widespread option for people with SCI to consider. In addition, research is being conducted on the use of FES for
improving tissue health and preventing pressure ulcers(Bogie and Triolo, 2003), an extremely important complication of SCI not addressed in this study. Work is also
currently being performed on the use of FES to improvefunctioning of the diaphragm to decrease the dependence
on ventilators for those individuals with high cervical injuries. Of extreme relevance, however, are past, current,
and future studies involving the use of FES to improvearm and hand function for quadriplegics (Peckham et al.,2002, 2001; Bryden et al., 2000; Grill and Peckham,
1998; Keith et al., 1989). Limited arm function for quadriplegics requires dependence on personal care attendants
for daily functions. Increasing arm function, of any
amount, will decrease the reliance on attendant care, increase independence, and substantially improve qualityof life.

Perspectives
The mismatch of desired outcomes with outcomes usually targeted by researchers is a concern to the SCI pop-

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ulation. Thus, those who use animal models should be encouraged to adapt those models and collect data on moretranslationally relevant outcome measures, such as thosehighlighted above. Though many of these issues will bequite difficult and challenging to unravel, the value of theresearch that is done will depend on its relevance to these
problems that strongly impact quality of life.
What constitutes quality of life? That is a very subjective question because people value different things. Aftera spinal cord injury, many things are lost and the complexity of the loss can be better understood by a person
who has sustained a paralyzing injury. Being paralyzed isso much more than not being able to walk. Physiologically, there are severe impairments in bladder, bowel, cardiac, respiratory, sensory, and sexual function (Blight,
2002). Socially, relationships are difficult to maintain, andreintegration into society is quite challenging (Noreau andFougeyrollas, 2000; Richards et al., 1999; Whiteneck etal., 1999). Financially, initial and long-term medical costs
are extremely burdening and, unfortunately, large proportions of people living with paralysis are not able to returnto full-time work and, thus, are dependent upon state andfederal assistance (Yasuda et al., 2002; National SCI Database, 2001). Psychologically, the loss of a “normal” life
can be devastating for months or years depending upon the
person, and this can result in further physiological, social,and financial problems (Stiens et al., 2002; Krause et al.,2000). All of these issues factor in definitions of the quality of life. Many research tools have been developed to try
to measure quality of life after SCI (Manns and Chad,
2001; Hallin et al., 2000), and the validity of these tools
is improving with repeated use.
Basic scientists are not typically trained to address thepsychological, social, and economic issues resulting from
SCI, but there remains a responsibility to be aware ofthese problems because of the impact on physiologicaldysfunctions and quality of life. Restoring any amount ofphysiologic function will lead to an equivalent increase
in independence, and this will have a profoundly positive effect on the adverse psychological, social, and economic factors associated with the SCI population. One
must keep in mind, however, the complexity that every
spinal cord injury is different and every person is different. Thus, what may be important to one person may beless of a concern for another person even if they have asimilar degree of injury. Further, what may be important
to a person at one point in their life may have a different value at a later point in time. The ultimate goal of
disease-oriented research, however, is to apply our results to the human condition and with that comes a hostof complications. One factor necessary in the successfulattainment of that goal is to draw upon the intimate
knowledge of the people living with the disease and totarget functional recovery. These data present an important roadmap for discovery (Zerhouni, 2003) with regard
to spinal cord injury.

ACKNOWLEDGMENTS
The author would like to thank Randy Smith for generously creating a web-based form of the survey andHosting Matters for donating server space; Dr. Alexander G. Rabchevsky and Dr. Edward D. Wirth, III for theirinvaluable advice throughout this project; and Dr. Andrew R. Blight and Dr. Claire E. Hulsebosch for criticalreview of this manuscript. Most importantly, however,
the author would like to recognize the spinal cord injured
community as a whole for actively providing information
about the human SCI condition to researchers. This research was performed at the Reeve-Irvine Research Center and all donors are graciously acknowledged.

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