Quality of life after spinal cord injury.

The term, quality of life (QOL), was first introduced in the 1950's as a political slogan. Initially, the idea of the good life referred only to entire populations (as in "the quality of American life"), but in the seventies a gradual shift occurred and the term was applied to individuals. Since then, it has become a notion bandied around by politicians, human service providers, policymakers, journalists, and especially academicians, who have worked tirelessly to define and measure the goodness of life of societies, groups, and individuals.

Three traditions of research have emerged (cf. Dijkers, in print). The first--social indicators research conducted by economists, geographers, and others--focuses on what can be termed "basic preconditions of quality of life in a community," such as percentage of homes with running water, economic growth, political stability, etc. Social indicators research deals with QOL at the level of a society or other geographic or political entity.

The second approach, of economists, sociologists, and other social scientists, investigates, at the level of the individual, the acquisition and loss of "the good things in life," such as education, income, material possessions, health, and community functioning. Healthcare researchers have realized that biological markers of disease activity, or even mortality and morbidity, are not always the most relevant indicators of successful interventions. This has resulted in an increased focus on measuring outcomes that are of direct interest to patients, such as health status, function, pain, and components of psychological well-being.

In a third shift, sociologists, social psychologists, and gerontologists moved from objective individual-level QOL to reported subjective quality of individual lives. They investigate people's cognitive (satisfaction) and affective/emotional (happiness) reactions to specific domains of their life, such as career, marriage, and health, and their opinions and feelings about their life as a whole.

Quality of Life, People with Disability, and Rehabilitation

The recent and large increase in the number of people with chronic diseases and injury sequelae, such as stroke, arthritis, and spinal cord and brain injuries, is the reason behind the emergence of quality of life as a major concern in the healthcare field. Although there is no cure for those disorders, pain and discomfort can be relieved, function enhanced, adjustment supported, and mental health improved. Nonmedical rehabilitation specialists, including vocational counselors and human service providers, have an interest in the same QOL outcomes, although they accomplish them through other types of interventions.

Fuhrer (1994) noted that there is a lack of studies using subjective well-being to measure the result of specific rehabilitation interventions and that there is almost no knowledge of how more traditional outcome measures (activities of daily living, independence, decreased complications, etc.) relate to subjective well-being.

On average, people with disabilities have a lower quality of life than nondisabled people, if objective measures are considered. They have impairments that almost always impose activity restrictions, and frequently impact cognitive and affective functioning. They have a major chronic illness with various signs, symptoms, and, sometimes, treatment side effects. If healthy, they often have a razor-thin margin of health, and frequently struggle with various acute illnesses. Activity restrictions and other forced lifestyle modifications often lead to secondary disabilities, such as pressure sores and carpal tunnel syndrome.

Health and disability-related problems are not the only ones, however. People with disabilities rank lower than their nondisabled counterparts in almost all measures of QOL that are not (or not directly) related to health (Thompson-Hoffman and Storck, 1991). Impairments and disabilities rob them of educational, vocational, and other opportunities, or at least severely restrict chances to enjoy such things as community participation, contact with others, parenting, and sexual intimacy. Census and other statistics show that people with disabilities have less education, more often are unemployed, and have lower incomes.

However, these differences with the nondisabled population in terms of objective QOL do not mean that people with disabilities have a lower subjective QOL. They are not by definition less happy, less satisfied with life, and less able to live productive lives. Impairment and disability can be very minor influences on one's judgment of overall life quality, and persons with disabilities may derive satisfaction from the same things as do nondisabled persons (material well-being, a successful marriage, etc.) to the same degree. Their overall level of life satisfaction is not necessarily lower than that of their nondisabled peers. This does not mean that the subjective, self-assessed QOL of persons with disabilities is never affected by their impairment or disability. Some obviously report diminished QOL compared to nondisabled peers or compared to themselves prior to the onset of disability.

Spinal Cord injury: Objective Quality of Life

In its consequences, a spinal cord injury (SCI) is like a stone thrown in a pond: increasingly wider areas of the life of the persons involved, and those around them, are affected. The impairment that is immediately obvious (sensory and motor deficits) may result in a limitation of or even total loss of the ability to perform common tasks such as self-care and walking. These abilities, in turn, commonly result in restrictions of role fulfillment as a worker, student, parent, citizen, and so forth. Sometimes these disadvantages are due not so much to disability as to societal reactions: negative attitudes and discrimination toward people with disabilities, which may be triggered by the mere fact of impairment. The person with spinal cord injury has to cope not just with a changed body image, new ways of doing things, and increased reliance on others for the performance of common tasks but also with changes in his or her social roles and interactions.

A recent publication (Stover, DeLisa, & Whiteneck, 1995), reporting results of more than 20 years of data from the SCI Model Systems, provides a summary of the most important objective QOL measures, including mortality, morbidity, secondary disabilities, and functional outcomes. The following section (from the heading, "Residence," to "Marital Status") is summarized from the chapter on social outcomes (Dijkers, Buda Abela, Gans, & Gordon, 1995).

Residence

The data in the National SCI Model Systems Data Base show that upon completing initial rehabilitation, the vast majority of persons with spinal cord injury (92.3 percent) are discharged to a private residence in the community. Very small numbers go to hospitals (1.4 percent), or nursing homes (4.0 percent). Some go to group living facilities (e.g. correctional institutions), usually for reasons other than medical or personal care needs (1.9 percent).

Institutionalization is a crucial QOL outcome, as it almost always imposes restrictions over and above those due to the impairment and disability itself, including: restricted access to community settings; limitation on the number and variety of social interactions (including with potential romantic/sexual partners); impoverishment of the number and/or quality of social roles played; and decreased self-determination, independence, and privacy. Institutional residence is the antithesis of independent living, and is considered an outcome indicating poor QOL.

Changes in economic, medical, and social circumstances in the years following discharge may result in changes in residence. On the whole, the percentage of persons residing in nursing homes and hospitals declines over the years after injury, and the percentage living in a private residence or other community setting increases. A rough estimate is that at any time, 2.6 percent of all persons with spinal cord injury live in a medical setting.

Employment

Return to work is often used as an indicator of overall recovery from illness or injury. At one time, employment was even equated with rehabilitation success. SCI reemployment figures reported in the literature vary tremendously (within a range from 13 to 48 percent) in terms of when the study was done, sample composition in terms of age, time since injury, neurological category, and by definition of employment. There is also much variation in the factors reported to be associated with employment, both preinjury (education, employment) and postinjury (neurological category, receipt of vocational rehabilitation services, etc.). However, a few generalizations may be made, based upon more recent studies, all of which were confirmed in the analysis of the National SCI Data Base information:

* Paraplegics have higher employment and reemployment rates than tetraplegics; and within both disability categories those with incomplete injuries are more likely to be employed.

* Those who incur spinal cord injury at a younger age are more likely to become (re)employed.

* Employment rates increase with years after injury.

* The less education preinjury, the less likely employment.

* Preinjury vocational experience predicts postinjury employment.

* Blacks and other minorities are less likely to become (re)employed, even taking into account age, education, gender, marital status, and neurological category.

* Completion of a vocational rehabilitation program makes employment more likely.

National Data Base information indicates that whereas over 60 percent of persons with spinal cord injury were working preinjury, at 1 year postinjury the most frequently reported status is unemployed (61.9 percent). By the first anniversary of injury, only 16.1 percent of those working at the time of injury have returned to work. About 8 percent of them have entered school and more than 70 percent consider themselves unemployed. In contrast, almost half of those who were homemakers at the time of injury have revived that role (49.1 percent), and almost 71 percent of those who were students have resumed their education.

Changes in vocational status appear to be most common in the earlier years after injury, with the exception of leaving the student status. The net result is an employment rate that increases steadily to reach a peak of 30 percent at about 10 years after injury.

Education

Of all cases entered into the National Data Base, at the time of their latest followup, 15.1 percent had improved their education level from the time of injury. As expected, the change is most pronounced for those under 17 at the time of injury (49.3 percent). Of those who were 17 through 25 years old at injury, 19.3 percent have improved their grade level, as have 6.2 percent of those who were at least 26 at the time they incurred their spinal cord injury. Data indicate that those who are white increase their grade level more frequently than those of other races. Except in the 26+ age group, tetraplegics achieve an advanced education more often than do paraplegics, and those with complete injuries do so more often than those with incomplete injuries. This presumably reflects their need to obtain a higher level of education, rather than ability or other factors. The data suggest that for persons with spinal cord injury, the educational process is delayed and extended. The educational level of those for whom 15th anniversary of injury information is available is better than that of the U.S. population as a whole.

Marital Status

Given the young age at which spinal cord injury typically occurs, it is not surprising that the majority of cases in the National Data Base (54.2 percent) were single at the time of rehabilitation discharge. In addition, 30.1 percent were married, 9.0 percent divorced, 4.4 percent separated, and 2.1 percent widowed.

During the first 6 years, from 1 year to the next, on average 2-2.5 percent of those who were single (never married) become married. From 10-30 percent

of all those in a not married category at injury have married by the 15th anniversary. Of those who are married, in any year a small percentage gets separated or divorced. The separation rate declines from 4.2 percent in the first year after injury to close to 0 percent in year 15. The divorce rate varies between 2.0 and 3.1 percent in years 1 through 8, and thereafter quickly declines to almost 0 percent.

All rates of change in marital status tend to be highest in the early years after injury, indicating that both the disturbances of marital relationships and the reduced opportunities to get married which SCI brings about decline in importance over the years. The net result is that the total percentage divorced increases over the years, as does the percentage married. The percentage who are single (never married) declines correspondingly, while the separated, widowed, and "other" groups stay about the same size. Comparisons with age and sex specific U.S. marriage rates indicate that persons with spinal cord injury are less likely to get married in the first 5 years after injury (11.5 percent vs. 34.5 percent); similarly, comparison with age and sex specific divorce rates indicates that they are more likely to get divorced during the first 5 years after injury (17.4 percent vs. 11.3 percent).

Spinal Cord Injury: Subjective Quality of Life

Extensive literature exists on the psychological and emotional sequelae of spinal cord injury, studied under such labels as coping and adjustment, depression, disability acceptance, and control (an overview may be found in Trieschmann, 1988). Studies that require persons with spinal cord injury to report their QOL globally or their satisfaction with various domains of life have, however, become common only during the last 10 years. The first one (Crewe, 1980) found that SCI subjects reported less life satisfaction than nondisabled persons, especially in the domains of sexual relations with spouse, employment, and financial (material) well-being, but also in the spheres of health and social relationships. Many other authors have found a low subjective QOL for persons with spinal cord injury, compared to a matched group or compared to the population at large (see Dijkers, 1996).

There is less consensus with respect to other findings. In a recent review, Fuhrer (1996) summarized findings by 19 studies (mostly published since 1990) of the relationship between subjective well-being (satisfaction, morale, happiness, etc.) and the three components of disablement: impairment, disability, and handicap. Many "no relationship" findings were reported, in addition to the expected ones (low QOL is associated with high impairment, disability, or handicap). It is possible that in the latter studies the lack of a statistically significant relationship was due to small sample sizes resulting in lack of statistical power. The discrepant findings may also be due to other methodological weaknesses, the varying nature of the samples employed in the studies (in terms of age, time since injury, gender, etc.), or the range of instruments used to measure subjective QOL. Fuhrer (1996) was limited to concluding that QOL appears to be little, if at all, related to impairment, inconsistently to disability, and commonly to various aspects of handicap. The relative strength of the relationships, or the circumstances under which disability affects QOL, could not be addressed in his qualitative review.

Dijkers (1996) extended Fuhrer's study by means of a mete analysis of 16 samples reported in 27 publications. Meta analysis is a method of statistically combining the results of multiple studies, with special attention to the consistency of effect sizes--the strength of the relationship between two variables, rather than statistical significance. I found an average correlation of--.05 (not significant) between impairment (level and/or completeness of the spinal injury) and subjective QOL, indicating that impairment by itself has no or a very minor effect on well-being (see Table 1). The association between disability and QOL was generally reported to be negative (the higher the disability level, the lower the QOL reported), and weak to moderately strong: the average over seven studies was -0.21.

Table 1 Summary results for the association of QOL with disablement components.

                                        95 % Confidence
                                           Interval
                        N of    Mean
                        Cases   Corr.   Low    High

Impairment                847   -.05    -.12    .02
Disability                829   -.21    -.27   -.14
Mobility                  252   -.31    -.42   -.19
Family role               264   -.17    -.28   -.05
Occupation                843   -.30    -.36   -.24
Formal soc. integr.       300   -.41    -.50   -.31
Informal soc. integr.     696   -.28    -.35   -.21
Social support            750   -.49    -.54   -.43
Handicap--all
  components            3,279   -.34    -.37   -.31

Several aspects of handicap can be distinguished, making it possible to analyze the association between QOL and various handicap dimensions. Lack of a family role (spousal or parental) seems to result in a lower QOL (average correlation of -.17). Occupation (work, attending school, or other productive activity) is an even stronger determinant, according to the consensus of 10 reports. The mean correlation is -.30. Results for the effects of mobility suggest that it is a fairly strong correlate, with a mean value of -0.31, indicating that those with a mobility handicap have a lower QOL. Social integration, into formal social organizations or into informal networks of friends and acquaintances, is also a fairly strong determinant: the mean correlation was -0.45 for formal social integration, -.29 for informal.

Meta analysis cannot answer the question: what is cause and what is effect? While there can be little doubt that impairment level is the determinant of QOL (if a relationship exists), it certainly is possible for subjective well-being to affect disability and handicap. Someone who for whatever reason does feel that his or her life is not the best it could be is not likely to engage in self-care activities that constitute an effort, let alone spend energy in taking up or discharging the various social roles that are common for people of the same age and sex. Without longitudinal research that makes it possible to statistically sort out the reciprocal effects of QOL and handicap, it is difficult to estimate to what degree well-being affects handicap and disability.

Because subjective quality of life is such a new area of study, the literature is lacking in hypotheses as to what specific elements of the "cascade of consequences of injury" have the most effect on well-being. We have limited information on what are the determinants of subjective QOL for persons with spinal cord injury, overall, in various subgroups, and over time. The findings reported here may come as a surprise to some (e.g., that the paralysis itself plays no larger role). For others, they may confirm that integration into family, the work force, and the larger community is the most crucial element. In a sense, the ranking of the three disablement components in terms of their correlation with subjective QOL is good news. While there is little that can be done to decrease impairment, especially in chronic SCI patients, rehabilitation specialists have the skills to diminish disability by furnishing training, providing aids and appliances, and so forth. They also can do much to minimize handicap, although changes in the larger society often are also needed, such as breaking down attitudinal barriers and undoing financial disincentives.

Recently, concern has been expressed that aging with a spinal cord injury will result in a range of medical, functional, and psychological problems that were not encountered when survival after such an injury was limited. A few authors have addressed the double burden of aging and disability (e.g., Trieschmann, 1987; Menter, 1994), often guided by the assumption that people who live with a spinal injury age faster. Because of this, the effects of age at injury and time since injury on QOL are of interest. Time since injury also is important from another, short-term perspective: most people, when asked to rate what subjective well-being they would have if they were to incur a spinal injury, come up with scores much lower than people with a spinal cord injury themselves do, on average. We can assume that immediately after injury, persons who incur a spinal cord injury have the same opinions and feelings. Part of "adjustment" must include changing this image of oneself and one's QOL.

A second mete analysis I did (Dijkers, unpublished) focused on time trends in QOL in persons with spinal cord injury (see Table 2). The reported correlations between QOL and time since injury were, with one exception, not significant. However, they all were positive, and the average correlation (weighted for sample size) was 0.09. This suggests that persons with a longer time since injury tend to rate their subjective well-being higher.

Table 2
Association of QOL with time factors.

                                    95 % Confidence
                                       Interval
                    N of    Mean
                    Cases   Corr.   Low    High

Current age         947     -.05    -.11   .01
Age at injury       584     -.05    -.13   .03
Time since injury   436      .09     .00   .18

Four studies reported five correlations with age at injury. Except for one, all were positive, indicating that those injured at a younger age experience a better QOL. The average correlation was calculated at -0.05. The correlations reported between current age (that is, at the time of study) and QOL generally were negative. The average was also calculated at -0.05: persons who are older report lower QOL. (Both correlations are not statistically different from 0.00--no relationship.)

If the effects of time since injury and current age both are linear, they cannot be distinguished from one another: a person who puts 10 years' distance between herself and the injury ages 10 years at the same time. Any effect of "aging" may be attributed to "adjustment," and vice versa. The fact that contradictory correlations were found (although not necessarily statistically different from one another) suggests that two different processes may be at work. "Adjustment" may be a short-term process resulting in a fairly sharp increase in self-rated QOL. Experts disagree on how long it takes, but anywhere from 2 to 7 years is suggested. "Aging" quite likely is a much slower process taking place over many years, resulting in a gradual decline in QOL. Most general population studies have found a slow decline in QOL with increasing age, at least for males, and most persons with spinal cord injury are male.

It must be noted that, with one exception, the studies included in this second mete analysis were cross sectional rather than longitudinal. Cross sectional studies have a number of disadvantages in studying change, including selective attrition and inability to distinguish aging effects from the consequences of changes in the world at large. More research in this area is needed, utilizing longitudinal designs incorporating multiple cohorts.

Conclusion

A spinal cord injury is no longer the almost certain threat to life it once was, before the invention of antibiotics and the development of medical technology. It also is not the catastrophe many still consider it to be. The majority of persons survive the spinal injury and go back to living. Due in no small measure to the interventions of medical, social, and vocational rehabilitation, many are successful. The vast majority lives in the community, not in an institution. Most of those who were in school at the time of injury go back, and some of those who had completed schooling or dropped out return, with the end result that persons with a spinal injury tend to be as well-educated, if not better educated, than the population as a whole. However, in spite of educational efforts, work is still an elusive goal for many. The various consequences of spinal cord injury do have an effect on family life and a person's chances of becoming married; compared with their peers, persons with a spinal injury are more likely to become divorced and less likely to get married.

These various restrictions in social roles, added to health problems and issues of psychological adjustment to a changed body, together constitute formidable challenges. Most people without spinal cord injury think that life with such a serious injury would not be worth living. However, once someone incurs a spinal cord injury, that opinion is almost certain to change, sooner or later. While the suicide rate for persons with spinal cord injury is much higher than for the population at large, only a fraction take that step--usually during the early years. A series of studies have indicated that, after a stormy initial 2-5 years, most persons learn how to cope.

While the average person with a spinal cord injury still rates her or his subjective well-being lower than peers do, the difference is relatively small. It would seem that the impairment itself is hardly a concern, at least in the long term. It is the disability and, even more so, the handicaps that follow in its wake that seem to impact life satisfaction and morale. In the short term, QOL improves after injury; in longer term, there would appear to be a gradual decline. Further study is needed to determine whether that decline is sharper than in the population at large.

Acknowledgments

This research was supported in part by Grants H133N50006 and H133G50138 from the National Institute on Disability and Rehabilitation Research (NIDRR). Thanks to Robert Heinrich, Ph.D., and Colette Hillebrand-Duggan, Ph.D., who conducted the interviews with spinal cord injured persons who provided the quotes highlighted in this article.

References

[1.] Campbell, A., Converse, P., & Rodgers, W. (1976). The quality of American life (p. 471). New York: Sage.

[2.] Crewe, N. (1980). Quality of life. The ultimate goal in rehabilitation. Minnesota Medicine, 63, 586-589.

[3.] Dijkers, M.P., Buda Abela, M., Gans, B.M., & Gordon, W. (1995). The aftermath of spinal cord injury. In S.L. Stover, J.A. DeLisa, & G.G. Whiteneck (Eds.) Spinal cord injury. Clinical outcomes from the model systems, Rockville: Aspen.

[4.] Dijkers, M. (1996). Subjective quality of life after SCI: a mete analysis. Poster presented at the Annual Meeting of the American Spinal Injury Association, Seattle, Washington.

[5.] Dijkers, M. (in print). Measuring quality of life. In Fuhrer, M. (Ed.) Medical rehabilitation outcomes research, Brookes Publishing Co.

[6.] Dijkers, M.P. (unpublished manuscript). Time heals all wounds? A meta analysis of the effects of time and age on subjective well-being after spinal cord injury.

[7.] Fuhrer, M.J. (1994). Subjective well-being: implications for medical rehabilitation outcomes and models of disablement. American Journal of Physical Medicine and Rehabilitation, 73,358-364.

[8.] Fuhrer, M.J. (1996). The subjective well-being of people with spinal cord injury: relationships to impairment, disability and handicap. Topics in Spinal Cord Injury Rehabilitation,l, 59-71.

[9.] Menter R.R. (1993). Spinal cord injury and aging: exploring the unknown. 1993 Heiner Sell Lecture of the American Spinal Injury Association. Journal of the American Paraplegia Society, 16,179-189.

[10.] In S.L. Stover, J. DeLisa, & G.G. Whiteneck (Eds.). (1985). Spinal cord injury. Clinical outcomes from the model systems, Rockville: Aspen.

[11.] In S. Thompson-Hoffman & I.F. Stork (Eds.). (1991). Disability in the United States: A portrait from national data. New York: Springer.

[12.] Trieschmann, R.B. (1987). Aging with a disability. New York: Demos.

[13.] Trieschmann, R.B. (1988). Spinal cord injuries. Psychological, social and vocational rehabilitation. 2nd edition. New York: Demos.

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Quotes from persons with spinal cord injury interviewed as part of the author's ongoing study of quality of life after spinal cord injury.

"So, the company offered me to [come back] to work on the [shop] floor for a little while and start. I was tickled. I come rolling out of the parking lot and I was crying. I told my wife; 'I got my job back!'"

"There's times I feel like I'm not a full man. I want to go out and shovel the side walk or do something to help [my family] out. Then, again, you just look at the chair. You're always going to need help for the rest of your life."

"Like they said: 'You're supposed to see that light at the end of the tunnel.' But that tunnel goes a long way before you see that light."

"I always thought that if ever I had an accident and I became a quad, I'd rather die. And yet, I met a number of people [with SCI] in the hospital and outside the hospital who seemed very happy--just for being alive and with their abilities. So, I guess, quality of life is: Are you happy with what you can do?"

"You know, I found out one thing: that it does not take a very big hunk of the good to balance out an awful lot of the bad."

"Well, whenever I got to complaining, when I hurt so bad, didn't do nothing, felt like I had to sit in the house, felt sorry for myself, didn't care about anybody else's feelings, I thought life was terrible. I thought this ain't life. This is existing."

"But I just want to make my family happy When I'm down a day it affects them because it seems like I'm giving up. You know, it's like you want to tell them what's going on but you have no way of explaining my side of the view: 'You're not the one laying in this bed. You're not the one that got the sores. You're not the one'."

"And quality of life--as an injured person--I think you'll change your definition [of quality of life]. Change completely because your quality of life goes from, I'd say, from day to night. I still have good quality of life, but I look to patients that I go to therapy with and I notice they are very sad. They don't want to work on their therapy. I find out, the families are not as helpful to them."

"I think [quality of life] has to be a relationship between what a person believes they are able to accomplish and believes they want to do and what is actually happening to them. If you have very low expectations then your quality of life may be easily met, and vice versa, obviously."

Dr. Dijkers is Manager of Research at the Rehabilitation Institute of Michigan and Associate Professor of Physical Medicine and Rehabilitation at Wayne State University, Detroit, MI