Archives of Physical Medicine and Rehabilitation
Volume 84, Issue 8 , Pages 1137-1144, August 2003

Aging, spinal cord injury, and quality of life: structural relationships1 ☆

  • Mary Ann McColl, PhD

      Affiliations

    • Corresponding Author InformationReprint requests to Mary Ann McColl, PhD, Centre for Health Services and Policy Research, Queen’s University, Kingston, ON K7L3N6, Canada
    • Queen’s University, Kingston, ON, Canada
    • ,
  • Robert Arnold, PhD

      Affiliations

    • Queen’s University, Kingston, ON, Canada
    • ,
  • Susan Charlifue, MA

      Affiliations

    • Research Department, Craig Hospital, Englewood, CO, USA
    • ,
  • Clive Glass, PhD

      Affiliations

    • Northwest Regional Spinal Injuries Unit, Southport, EnglandUK
    • ,
  • Gordana Savic, MD

      Affiliations

    • National Spinal Injuries Centre, Stoke Mandeville, EnglandUK
    • ,
  • Hans Frankel, MB, FRCP

      Affiliations

    • National Spinal Injuries Centre, Stoke Mandeville, EnglandUK

Article Outline

Abstract 

McColl MA, Arnold R, Charlifue S, Glass C, Savic G, Frankel H. Aging, spinal cord injury, and quality of life: structural relationships. Arch Phys Med Rehabil 2003;84:1137–44.

Objective:

To quantify relationships among 3 sets of factors: demographic factors, health and disability factors, and quality of life (QOL).

Design:

Part of a program of longitudinal research on aging and spinal cord injury (SCI) involving 3 populations: American, British, and Canadian. The present analysis uses data from the 1999 interval.

Setting:

The Canadian sample was derived from the member database of the Ontario and Manitoba divisions of the Canadian Paraplegic Association. The British sample was recruited from a national and a regional SCI center in England. The American sample was recruited through a hospital in Colorado.

Participants:

A sample of 352 participants was assembled from 4 large, well-established databases. The sample included individuals who had incurred an SCI at least 20 years earlier, were admitted to rehabilitation within 1 year of injury, and were between the ages of 15 and 55 at the time of injury.

Interventions:

Not applicable.

Main Outcome Measures:

A combination of self-completed questionnaires and interviews. Data included demographics, injury-related variables, health and disability-related factors, QOL, and perceptions about aging.

Results:

Using linear structural relationships modeling, we found that QOL was affected both directly and indirectly by age, health and disability problems, and perceptions of aging. Two surprising findings were as follows: those who experienced fewer disability-related problems were more likely to report a qualitative disadvantage in aging, and the younger members of the sample were more likely to report fatigue.

Conclusions:

Fatigue is a concern because of the relationship of fatigue with perceived temporal disadvantage in aging, health problems, and disability problems. This finding highlights the need for clinical vigilance among those just beginning to experience the effects of aging.

Keywords:  Aging, Quality of life, Rehabilitation, Spinal cord injuries

 

THERE ARE AT LEAST 5 TYPES of changes that people with spinal cord injury (SCI) encounter as they grow older: (1) the effects of living with SCI for many years, such as shoulder deterioration, chronic bladder infections, or postural problems; (2) secondary complications of the original lesion, such as posttraumatic syringomyelia; (3) pathologic processes not related to the SCI, such as heart disease or other chronic diseases; (4) degenerative changes associated with aging, such as joint, sensory, and connective tissue problems; and (5) environmental factors, such as societal, community, and cultural issues, which can further complicate the experience of aging with SCI.

Studies of secondary complications of long-term SCI are accumulating an impressive storehouse of information. Recent research1, 2, 3, 4, 5 has identified demographic, health, and disability factors that affect the perceived quality of life (QOL) among long-time survivors. There are conflicting findings in the literature, however, about the QOL of long-term survivors of SCI. Westgren and Levi,6 in a study of 320 SCI survivors in Sweden, found that the QOL of their sample was lower than that of the population norm. On the other hand, Hall et al,7 studying only people with quadriplegia, found that both self-esteem and QOL were high, with 95% of their sample asserting that they were “glad to be alive.”

Nonetheless, some contend that such positive findings do not accurately reflect reality and challenge reports that QOL among SCI survivors is as high as among nondisabled people.8 Findings regarding relationships between the severity of the disability and reported QOL are inconsistent,9, 10 but in some studies, functional declines did seem to be related to lower perceived QOL.11, 12

There are also disagreements about whether QOL is affected by time (age, duration of disability, age at onset). Some studies found that, along with other psychologic variables, QOL diminished over time.13, 14 McColl15 reported that QOL remained high until the fifth decade postinjury, and Westgren and Levi6 and Dijkers16 reported that it increased with age, reflecting an adaptive process. Krause and Crewe17 reported that although perceived QOL tended to drop after the initial injury, it gradually increased, reaching levels comparable to those in the general population.

What is clear in the literature is that QOL is affected by 2 main sets of factors associated with SCI: health factors and factors that impose social restrictions. With regard to health factors, Noreau et al18 reported that secondary complications led to alterations in perceived health status, which consequently affected QOL. A number of authors6, 14, 19, 20 attested to the impact of pain on QOL and the potential for several different types of pain associated with SCI to increase with age.

The other major category of factors affecting QOL of people with SCI appears to be those that have social consequences. Holicky and Charlifue21 reported that marital status was significantly related to QOL, with married participants reporting higher QOL. They speculated that this was due to a number of roles and functions performed by spouses, one of which was surely the facilitation of other social contacts. On the other side of the issue, Ville and Ravaud22 mentioned 3 types of factors that inhibit social participation: those that cause embarrassment, dependence, and practical restrictions. For example, problems of bladder and bowel function have been found by a number of authors to be related to diminished QOL. Fear of accidents, urgency, and time spent on the toilet all contribute to limitations on social participation.6, 23 Randell et al24 reported that QOL was not affected by the presence of a colostomy; that QOL was similar between matched SCI samples with and without colostomy. Perhaps the relatively predictable nature of care required of a colostomy is less socially disruptive than a number of unpredictable aspects of other forms of bowel management.

Qualitative research has shown that there are 4 common perceptions held about aging among people with SCI25: (1) aging happens earlier or faster for someone with an SCI than for their able-bodied contemporaries, resulting in a temporal disadvantage; (2) aging is more severe or problematic for someone with a preexisting disability, resulting in a qualitative disadvantage; (3) aging and disability are 2 independent effects that are not related to each other—that is, there is no effect of disability on aging; and (4) disability is actually an advantage in aging, because of previously learned skills and coping methods.

At the root of these perceptions are 3 beliefs about the mechanism of aging with an SCI.25 First, some believe that there is a negative interaction effect between aging and disability. When aging and disability occur together, their joint effects are less than the sum of their independent effects; with age, some of the effects of disability are obscured. Second, there may be a simple additive effect of age on disability. The effects of aging may be layered over the effects of a life-long disability, with the resulting impact being equal to the sum of the two. Third, the layering of age over disability may result in a multiplicative or exponential effect. The effects of aging somehow aggravate the effects of disability to produce a more extreme effect.

There has been relatively little discussion in the literature about the perceptions that long-time SCI survivors hold regarding aging and disability. Noreau and Fougeyrollas,26 in their study of handicapping situations, found no evidence that their sample of 482 survey participants felt that they were temporally disadvantaged in terms of aging. However, the research is not at all clear about the relationship between perceptions of aging and QOL or about the effects of demographic and disability factors on these outcomes. In our study, we used a large international database and a powerful statistical technique to quantify relationships between 3 sets of factors: demographics, health and disability, and QOL.

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Methods 

Design 

Our study was part of a longitudinal program of research on aging and SCI involving 3 populations: American, British, and Canadian.27 This article presents the results of a cross-sectional analysis of the data collected in 1999.

Sample 

A total sample size of 352 participants was assembled from 4 large, well-established databases at the Ontario and Manitoba divisions of the Canadian Paraplegic Association; the Northwest Regional Spinal Injuries Centre in Southport, England; the National Spinal Injuries Centre in Stoke, Mandeville, England; and the Craig Hospital in Englewood, CO.

These 4 databases represent an exceptional international resource for the study of aging with SCI. The sample included individuals who (1) were at least 40 years of age, (2) had incurred an SCI at least 20 years earlier, (3) were admitted to rehabilitation within 1 year of injury, and (4) were between the ages of 15 and 55 at the time of injury. Details of the sample are presented in table 1.

Table 1. Details of the Sample
VariableFrequency (N=352)%
Age (y)
40–498925.36
50–5911733.33
60–699025.64
70–794613.1
≥8092.5
Mean ± SD57.89±10.59
Sex
Male21782.8
Female4517.2
Level of injury
Cervical (3)14344.1
Thoracic (2)15046.3
Lumbosacral (1)319.6
Duration (y)
20–2912335.0
30–3914240.5
40–497421.1
≥50123.4
Mean ± SD33.7±8.20
Completeness
ASIA class A (5)19658.1
ASIA class B (4)5917.7
ASIA class C (3)319.3
ASIA classes D, E (2, 1)4714.1
Country
Britain11332.1
Canada13438.1
United States10529.8

Abbreviations: ASIA, American Spinal Injury Association; SD, standard deviation.

Data collection 

Participants from all 3 countries were contacted by mail to request their participation in the study. For those who agreed, 2 measures were mailed for self-completion, along with a stamped return envelope.

Current problem questionnaire 

The Current Problem Questionnaire28 includes 18 Likert-type items, on which subjects are asked to rate, on a scale of 1 to 5, the degree to which they have had problems with various aspects of their lives. Three subscales were created for these analyses, using principal components analysis and reliability analysis,29 all with acceptable values of internal consistency reliability: (1) disability-related problems, including items such as dependency, accessibility, transportation, attendants, and attitudes to disability (Cronbach α=.727); (2) psychosocial problems, such as loneliness, depression, boredom, stress, family problems, and substance abuse (Cronbach α=.772); and (3) health problems, such as pain and loss of function, strength, and endurance (Cronbach α=.721).

Life satisfaction index 

The Life Satisfaction Index30 (LSI) asks participants to state whether they agree, disagree, or are undecided about 13 statements regarding whether they are better or worse off than they once were or than they perceive others to be. The LSI results in a total possible score between 0 and 26, and has been shown in previous analysis to be unidimensional (Cronbach α=.84). Higher scores indicate greater life satisfaction. The LSI has been shown to correlate well with life satisfaction ratings obtained by trained judges.31

Once the completed set of measures was received, a telephone interview was scheduled in most cases. All of the American and Canadian participants and about half of the British participants were interviewed by telephone. In some instances in the British sample, clinic appointments were scheduled to permit face-to-face interviews (in lieu of telephone interviews). The 2-part interview took between 30 and 60 minutes.

The demographic form 

The demographic form included age, injury level, American Spinal Injury Association injury classification, and duration of disability. Where possible, injury details were confirmed from the records of the recruiting agency.

The current status interview 

An extensive clinical interview derived the following variables: (1) effects of fatigue; six 5-point rating scales asking participants to rate the effects of fatigue on daily activities (range, 0–30); (2) QOL; 5-point scale (excellent, good, fair, poor, very poor); and (3) perceptions of aging; compared with able-bodied contemporaries (more severely, more quickly).

Analysis 

On completion of the interviews, the data were entered, cleaned, and analyzed using the Microsoft Accessa database management system and the SPSS statistical package.b Missing data were accounted for as follows: (1) in analyses involving original variables, missing cases were deleted pairwise (ie, from that particular analysis only and not from the remainder of the analysis); (2) in analyses involving computed variables, such as scales and subscales, if fewer than 15% of variables were missing from a particular computation, the mean of missing items was imputed, and the scale total was subsequently computed; and (3) if more than 15% of items were missing from a computed score, the entire score was treated as missing.

For this analysis, the general linear structural relationships model was used. This model consists of 2 parts: (1) a measurement model that relates measured subscales to latent constructs and (2) a structural model that allows estimation of the coefficients relating the latent constructs to one another. Data for the model were entered in the form of a covariance matrix of 11 measured variables. The maximum likelihood method was used for parameter estimation. The measurement model consisted of single indicators for all the variables of interest, with the exception of QOL, on which 2 measured variables were loaded: the 5-point QOL scale and the LSI. Measurement error for the remaining psychometric variables was estimated from reliability analyses.

Identification and resolution of ethical issues 

Ethical issues were resolved through approval of the Research Ethics Board at Queen’s University, the Institutional Review Board at the Craig Hospital, and the research ethics committees of the 2 British hospitals.

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Results 

The final structural model shown in figure 1 looked at inter-relationships among 3 categories of variables: (1) age and lesion-related variables (level of lesion, age, years postinjury); (2) health and disability variables (disability-related problems, health problems, fatigue); and (3) QOL indicators (QOL, aging worse, aging quicker).

The likelihood ratio chi-square (used as an overall measure of goodness of fit) was χ262=35.2 (P=.11), confirming that the data did not differ significantly from the hypothesized model. The overall goodness of fit index was .96. Inspection of the modification indices suggested that any changes to the model would not improve the fit. The model explained 46.8% of variance in QOL and a moderate amount of variance in the other 2 outcome variables: 32.2% of variance in the perception of aging more quickly and 15.1% of variance in the perception of aging with more difficulty. Figure 1 shows standardized regression coefficients for specific pathways only if they were significant (P<.05).

Effects on outcomes 

Quality of life 

The model showed a number of direct and indirect effects on QOL, as summarized in table 2. Indirect effects were calculated as the product of the standardized regression coefficients corresponding with paths leading from starting variables to the final dependent variable. Total effects were calculated as the sum of direct and indirect effects. The strongest effects on QOL were exerted by health problems, age, the perception that one is aging more quickly than others (temporal disadvantage), and fatigue. Of the 7 variables considered as predictors, 6 had negative effects on QOL, with only 1, time since injury, having a positive effect. That is, the longer someone lived with the disability, the more likely he/she was to report a higher QOL.

Table 2. Effects on QOL
Predictor VariablesIndirect EffectsDirect EffectsTotal Effects
Health problems
Health problems → disability problems(.431×−.251)=−.108−.327−.435
Aging quicker −.395−.395
Age
Age → health problems(.248×−.327)=−.081
Age → fatigue → aging quicker(−.207×.359×−.395)=.029
Age → health problems → disability problems(.248×.431×−.251)=
−.079−.277−.356
Fatigue
Fatigue → health problems(.435×−.327)=−.142
Fatigue → aging quicker(.359×−.395)=−.142
Fatigue → health problems → disability problems(.435×.431×−.251)
−.331 −.331
Disability problems −.251−.251
Level of lesion
Level → aging quicker(.237×−.395)=−.094
Level → disability problems(.415×−.251)
−1.98 −.198
Years postinjury
Years postinjury → aging quicker(−.191×−.395)=.077
Years postinjury → fatigue → aging quicker(−.341×.359×−.395)=.045
Years postinjury → fatigue → health problems(−.341×.359×−.327)
+.163 +.163

For ease of identification, these effects have been isolated in figure 2A. Four variables exerted direct effects on QOL: perception of aging more quickly (−.395), health problems (−.327), age (−.277), and disability problems (−.251). Health problems also exerted an indirect effect through a strong positive association with disability problems (−.108). Age also had indirect effects on QOL through its relationships with health problems, fatigue, disability problems, and the perception of accelerated aging (−.079).

Indirect effects were exerted by 3 additional variables. Fatigue had a net negative effect on QOL through its relationships with health and disability problems and with perceived temporal disadvantage (−.331). The level of lesion had a negative indirect effect on QOL through its associations with disability problems and with perceived temporal disadvantage (−.198). Duration of disability (measured as years postinjury) had indirect effects via fatigue, health problems, and perceived accelerated aging, resulting in an overall positive effect (.163).

Aging quicker 

Figure 2B shows that the perception of aging more quickly than others was increased by level of lesion and fatigue, but decreased by duration of disability. Thus, the longer one lived with the disability, the less likely he/she was to perceive a temporal disadvantage.

Aging worse 

As shown in figure 2C, both health problems and fatigue directly affected the extent to which our sample perceived that they had more difficulty with aging than others. Interestingly, although duration of disability had a net positive effect on QOL, it was directly associated with aging worse. That is, with a longer duration of disability, it seems participants simultaneously perceived that aging would be more difficult for them, but that life could be more satisfying. Age also indirectly affected the perception of aging worse through its relationships with health and fatigue.

Effects of demographic and disability variables 

Another way to look at these results is to work from the left-hand side of the overall model and examine the effects exerted by independent variables.

Age 

Figure 3A shows the far-reaching effects that age had on the variables in this model. Older participants experienced lower QOL, more health problems, and, surprisingly, less fatigue. Age had a direct effect on QOL, as well as indirect effects through health and disability problems and through fatigue. Age had indirect effects on the perceptions of aging quicker and aging worse through health problems and fatigue.

Lesion level 

Lesion level exerted some of the sparsest effects in the model. Higher levels of lesion (operationalized as in table 1), not surprisingly, were related to more disability-related problems, such as access problems, attendant care problems, and attitudes toward disability. Higher lesions also contributed to a perception that one was aging more quickly than others, and thus indirectly affected perceptions of QOL. However, contrary to expectations, those with higher lesions did not report more health problems or fatigue than other members of the sample.

Duration of disability 

Those who had lived longest with their disability reported the least fatigue. Duration of disability had direct effects on perceptions of aging; it made people more likely to perceive that they were aging severely and less likely to perceive that they were aging more quickly than others. Duration affected QOL indirectly through its relationships with health and disability problems and with fatigue.

Fatigue 

Fatigue has appeared in most of the analyses discussed thus far, and so it warrants particular consideration among the determinants of aging and QOL. Fatigue is influential in terms of its relationships with health problems and with negative perceptions about aging. It was directly associated with both perceptions of qualitative and temporal disadvantage, and was indirectly associated with QOL through health and disability problems.

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Discussion 

The results of the study emerging from the structural model can be classified as either obvious, explainable, or surprising. In the category of obvious findings, higher QOL was related to fewer health and disability-related problems. Older participants were found to have more health problems, and those with higher lesions were found to have more disability-related problems. These findings require little additional discussion because they have been so thoroughly covered in the literature.13, 14, 15, 16, 17, 18

There were 3 findings in the explainable category: (1) lower QOL was related to older age and a perception of accelerated aging; (2) the perception of aging more severely was prevalent among those with more health problems and more fatigue; and (3) the perception of aging more quickly diminished the longer one lived with their disability. Although these findings support other studies that found a relationship between age and QOL,14, 15, 16 they also combine to create a picture of 2 groups of long-term survivors—those who experience relatively few secondary complications and age with some degree of ease, and those who experience multiple health problems layered over higher lesions and more disability-related problems. The former appear to have an understandably higher QOL and a less negative perception about aging than the latter.

Of interest is the finding that the perception of aging more quickly diminishes as one lives longer with the disability. It suggests that beliefs about the presence of a temporal disadvantage in aging may reflect the anticipation of aging more quickly, rather than the fact of aging more quickly. Instead, as one in fact lives longer with the disability, one discovers that the effects of aging accrue at a rate comparable to that experienced by able-bodied contemporaries, and the less one perceives oneself at a temporal disadvantage, the higher the QOL.

There were a number of findings in the study that were surprising, and, as such, require more thorough discussion and examination. It was observed that fatigue was greatest among members of the sample who were younger and had a shorter duration of disability. This finding also appears counterintuitive because one might expect that fatigue would accompany older age and longer duration of disability. Instead, what we learned from our sample is that fatigue is a factor for younger participants, perhaps those with a more active lifestyle, or even a lifestyle that exceeds their energy levels. Perhaps as people age they learn the limits of their activity tolerance and accommodate their injuries and capabilities. This same phenomenon may be evidenced by another finding already discussed above—that the perception of aging more quickly diminishes as people live longer with their injuries. Instead of interpreting a lack of energy as a sign that one is aging prematurely, perhaps with longevity people come to understand and accept the limits of their energy endowment and thus are less likely to interpret it as fatigue or a sign of premature aging.

It may also be that those who are younger and have lived a shorter time with their disability may have more reliable recollections of their pretrauma activity level. Therefore, they may be more likely to compare themselves with their pretrauma abilities or with their able-bodied contemporaries on the basis of their recollections of pretrauma life.32, 33 There are 2 theories of aging among minority groups, such as those with a disability. One, referred to as the “double jeopardy” theory, suggests that as people age, the effect of their minority status becomes even more of a disadvantage than it was when they were younger. The other, referred to as the “age as leveler” theory, suggests that with age, other disadvantages become less pronounced, that is, age acts as a leveler across social strata.25 This finding appears to support the latter “age as leveler” theory. Whereas young people with disabilities differ significantly from their able-bodied peers, among older people, the effects of the disability are perhaps not as influential.

The finding of increased fatigue among younger participants draws our attention particularly to those between 40 (the minimum age at which participants could enter our study) and 65, whose fatigue may be a result of continuing to work. To understand this finding better, we looked at other factors that might explain this increased fatigue among the younger participants. We found that fatigue was significantly related to continuing to work and to the number of hours worked. Although there is a concentration of literature discussing initial return to work after SCI,34, 35 there is very little information concerning retirement. Little guidance is available about an appropriate age for retirement, patterns of retirement, or planning for retirement. Qualitative research has shown that many older survivors were led to believe that they would not live into old age, and so retirement planning was not a concern.25 They more or less told us that if they had known they would live so long, they would have made better plans. Furthermore, retirement sometimes runs counter to the ideal of independence, which was so firmly reinforced in the early years of SCI rehabilitation,36 and considerable adjustment is required to accept the possibility of early retirement.37 Actuarial data in each of the countries indicates increasingly longer life among both the able-bodied and SCI populations, and strategic planners and SCI treatment facilities need to consider the extension of life-planning and care provision for their increasingly aging populations. The finding about fatigue is particularly troubling, because the model also shows that fatigue has a number of negative effects on health problems, disability problems, perceived temporal disadvantage, and, ultimately, on QOL.

In our study, we have considered aging globally, particularly in the questions about aging more quickly or more severely. This approach is useful in obtaining an overall picture of perceptions about aging; however, it may also be somewhat misleading. There is evidence from cognitive research showing that aging does not advance equally in all aspects of an individual’s abilities. An individual who remains interested or active in a specific area may retain or even develop particular cognitive skills and practical abilities in that area. Baltes and Lindenberger38 showed that older people often benefit from “selective optimization,” where they maximize their global ratings of their own functioning by focusing on tasks and activities that have meaning or value for them as individuals. Situational factors, such as fatigue,39 cautiousness,40 and the tendency of older people in general to evaluate their own performance and abilities more negatively41 must be taken into account in global interpretations of aging.

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Conclusion 

Our study used a multivariate approach to develop a model for the effects of various demographic, health, and disability factors on QOL. The model clearly showed that the presence of health- and disability-related problems had both direct and indirect negative effects on QOL. Similarly, age was shown to have direct and indirect negative effects on QOL in this sample, all of whom were older than 40 years of age and 20 years postinjury. Most surprising was the finding that fatigue and negative perceptions of aging were more prevalent among the younger participants with shorter durations of disability than among the older subjects. This highlights the need for clinical vigilance among those just beginning to experience the effects of aging.

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  • 1 No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.
  • a. Microsoft Corp, One Microsoft Way, Redmond, WA 98052.
  • b. SPSS Inc, 233 S Wacker Dr, 11th Fl, Chicago, IL 60606.

☆ Supported by the Ontario Neurotrauma Foundation.

PII: S0003-9993(03)00138-2

doi:10.1016/S0003-9993(03)00138-2

Archives of Physical Medicine and Rehabilitation
Volume 84, Issue 8 , Pages 1137-1144, August 2003

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