NeuroRehabilitation An Interdilciplilllry Journal

ELSEVIER

NeuroRehabilitation 5 (1995) 57-73

Long-term outcomes following spinal cord injury Karen A. Hart* , Diana H. Rintala Baylor College of Medicine and The Institute for Rehabilitation and Research, Houston, TX, USA

Accepted 10 September 1994

Abstract Long-term outcome assessment of people with spinal cord injury (SCI) beyond acute rehabilitation is becoming an increasingly important issue as life expectancies for people with SCI approach those of the general population. This article provides information about research on the long-term physical and psychological well-being and the community integration of individuals with SCI. Persons with SCI have been found to have more physical and psychological problems and they are less well integrated into the community than the general population. Long-term measurement issues, criteria for selection of instruments, and recommended instruments are discussed. Keywords: Spinal cord injury; Long-term outcome; Community integration; Paraplegia; Tetraplegia; Quadriplegia

1. Introduction Spinal cord injury (SCI) affects every aspect of a person's physical, psychological and social being. Initially, research about SCI was directed toward the critical aspects of survival and emergency and acute medical treatment. Medical advances in these areas prompted research into aspects of rehabilitation and initial outcomes. Most of this research reports on outcomes within the first 2 years after rehabilitation and includes only those individuals that have completed some

* Corresponding author, The Institute for Rehabilitation and Research, 1333 Moursund St., Houston, TX 77030, USA.

sort of rehabilitation program. To further advance knowledge in the field of spinal cord injury, research must encompass the lifetime of the individual with SCI and must include individuals living in the community who have had varying degrees of acute medical care and rehabilitation. This article provides information about research on the long-term physical and psychological wellbeing and community integration of individuals with SCI with an emphasis on information about people who have lived with an SCI for at least 2 years. We also discuss some issues in the measurement of long-term outcomes, recommend criteria for selecting instruments, and describe some measures that have been used successfully.

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2. Long-term physical well-being following spinal cord injury

The physical well-being of individuals with SCI is, perhaps, the most important consideration in long-term outcome. Advances in medical treatment have increased the survival rate following SCI to a level that approaches that of the general population [1]. However, problems persist in the incidence of secondary complications and the utilization of health care services over the lifetime of an individual with SCI (Table 1).

2.1. HO!Jpitalizations After survival rates, hospitalization is the next most significant indicator of health and physical well-being. Individuals with SCI have their lives disrupted all too frequently by the need for hospitalization. Ivie and De Vivo [2] reported on a cross-sectional study of 2035 individuals in the National Spinal Cord Injury Statistical Center. They found that 26% of all persons were hospitalized during the most recent follow-up year. However, risk of rehospitalization declined 13% for each successive year postinjury. Harvey et al. [3] reported that the average person with SCI spent 171 days in the hospital in the first 2 years after injury. Meyers et al. [4] reported that, on average, each year a person with SCI requires 1.3 hospitalizations, 16.8 days in the hospital, and 1.7 emergency room visits. In a study of health services utilization in a community-based sample of persons with SCI, Fuhrer et al. [5] found that 26% were hospitalized at least once during the preceding 12-month period, a prevalence that is identical to that found by Ivie and DeVivo [2]. Median total duration of hospitalization for those hospitalized was 11 days. Davidoff et al. [6] found that 39% of their patients with SCI were readmitted at least once during the first year after discharge from initial rehabilitative care. The mean length of stay was 11.9 days. The patients that were rehospitalized were less educated, had a substantially longer initial rehabilitation length of stay, and were more likely to have had Frankel grades of A or B at discharge from initial rehabilitation. In their model for assessing risk of rehospitalization, Ivie and De Vivo [2]" found that less than a

college education, indwelling catheters, motor complete injuries, dependence in self care and dependence in ambulation accounted for 60% sensitivity and 63% specificity. Meyers, et al. [4] found that older age, less education, poorer selfassessed health, lower life satisfaction, and lack of organizational memberships were predictors of rehospitalization. Fuhrer et al. [5] stated that the likelihood of being hospitalized was significantly and positively related to the amount of depressive symptomatology, but not to demographic variables or variables reflecting degree of paralytic impairment, disability or handicap. Preponderant reasons for hospitalization were urinary tract disorders (36%) and pressure ulcers (26%). Recurrent hospitalizations for pressure ulcers and urinary tract infections have long been a concern of rehabilitation clinical professionals. Common to several of the above studies is the lower education level of those hospitalized most often. There are very few individuals who are skilled at teaching those with less education and there are few rehabilitation educational materials that are targeted specifically for these individuals. Rehabilitation professionals must begin to work with specially trained educators to find ways to provide instruction to these individuals with SCI to reduce their need for rehospitalization. 2.2. Pressure ulcers

Pressure ulcers continue to be a most troublesome secondary complication of SCI. Clinicians operate on the assumption that pressure ulcers are preventable albeit that some are more at risk than others. This assumption increases the frustration about the problem. Through the years, specialists have introduced a variety of cushions and seating devices, creams and soaks, and devices to remind individuals to do 'push-ups' or weight shifts to relieve pressure. Yet the problem continues. It appears that over the long-term the likelihood of incurring skin problems persists. Young and Burns [7] studied 3322 individuals whose rehabilitation occurred in a Model Spinal Cord Injury System Center. They found that the incidence of pressure ulcers was 30% for the first 5 years following injury. Whiteneck et al. [8] studied post rehabilitation outcomes for 216 persons

KA. Hart, DB. Rintala / NeuroRehabilitation5 (1995) 57-73 Table 1 Long-term physical well-being following SCI Long-term outcomes

Problem

Risk factors and correlates

Hospitalizations

Rehospitalization 39% first year 26% past year

Less education Longer lengths of stay during initial rehabilitation Complete injury Indwelling catheter Dependent in self-care and ambulation Older age Poorer self-assessed health Less life satisfaction Lack of organization membership More depressive symptomatology

Days hospitalized 171 days first 2 years 11-13 days per stay

Pressure ulcers

30% first five years 23% per year first 5 years 29% per year sixth year and longer

16% year 2 24% year 6 31 % year 12 33% prevalence in community sample Urinary tract complications

Pain

Male Non-white / African-American Unmarried Unemployed Complete injury More comorbidities More paralysis More physically dependent Less personal productivity Less mobility

Renal stones 1.5% years 2-8 4.0% years 9-15 Abnormal renal function 4.6% years 1-5 8.0% years 6-10 17.8% years 11-15 Urinary tract infections 37% prevalence in community sample 36% increased frequency over time 21 % increased severity over time 34% recent change in bladder management method

Indwelling catheter Suprapubic catheter More paralysis More physically dependent Presence of pressure ulcer Less social support Less social integration Less mobility Less personal productivity

Pain in general 96% pain 53% frequent pain 31 % pain that interferes with t·. . .. actIvItIes

Less accepting of disability Significant other punishes pain behavior Emotional distress Female Paraplegia Obtained SCI by violence Older Shorter duration

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Table 1 (Continued) Long-term outcomes

Problem

Risk factors and correlates

Upper extremity pain 68% whole sample 100% years 15 or more 55% tetraplegia 64% paraplegia Musculoskeletal problems

Nutritional problems

Degenerative joint disfunction 58% women 54% men Shoulder pain - 51 % Decreased strength and energy 50% women 25% men Joint pain - 33% Pathologic fractures - 6%

Older, female

Tetraplegia

Reduced caloric intake 75% tetraplegia 47% paraplegia Moderate malnutrition - 53% Below normal weight - 10% Overweight 35% women 17% men Underweight 18% women 13% men

with complete injuries at C-4 or above whose rehabilitation had occurred at one of three Model Spinal Cord Injury System Centers. Pressure ulcers occurred annually in 22.8% of the individuals who were 1-5 years post-injury and in 29% of the individuals who were 6 or more years post-injury. The Model SCI Systems Consensus Conference report [9] states that follow-up data indicate an increased risk for pressure ulcer development in subsequent years. In year 2 the rate is 16%, in year 6 it is 24%, and in year 12 it is 31%. In a randomly-selected, community based sample 33% of the participants presented with a pressure ulcer on the day they were examined [10]. Differences between groups of individuals with and without pressure ulcers have been presented in several studies. Young and Burns [7] found a higher incidence of ulcers to be associated with being male, non-white, unmarried, unemployed,

having a complete spinal cord lesion and having a greater number of comorbidities such as pulmonary disease, spasticity, or anemia. In the study by Fuhrer et al. [10] the group with ulcers had a significantly lower mean ASIA Total Motor Index score, indicative of greater impairment, and a lower mean FIM score indicative of greater disability. The presence or absence of ulcers was not related to whether the injury was cervical or subcervical or whether the injury was complete or incomplete. Of the participants with ulcers, 42.2% had a severe lesion (i.e. Stage III or IV). Of the total sample, 13.6% presented with at least one severe ulcer. A larger proportion of AfricanAmericans than their white counterparts had severe ulcers and the group with either Stage III or IV ulcers had lower mean Occupation and Mobility scores on the Craig Handicap Assessment and Reporting Technique (CHART).

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2.3. Urinary tract complications Although renal failure and urinary tract complications are no longer the leading causes of death among persons with SCI [11], follow-up data from the Model Spinal Cord Injury System Centers [9] suggest a rising prevalence of urological complications across post injury years. The mean prevalence of renal stones during years 2-8 postinjury was 1.5%, while during years 9-15 postinjury it was 4%. The mean prevalence of abnormal renal function on intravenous pyelogram or renal scan was 4.6% during follow-up years 1-5, 8.9% during follow-up years 6-10, and 17.8% during follow-up years 11-15. In the British study conducted by Whiteneck et al. [12], 36% of their participants with SCI reported increased frequency of urinary tract infections over time. Twenty-one percent reported increasing severity and 34% reported having to change their method of bladder management. The percent using indwelling catheters increased over the years from 5% to 16%. In the community-based sample of individuals with SCI studied by Rintala et al. [13], urinary tract infection (defined as urine colony count of at least 100000 organisms/ml, concomitant with a red cell count greater than 5 or a white cell count greater than 10 /high-powered microscopic field) was found in 37% of the participants on the day of examination. Urinary tract infection was found more frequently in people using indwelling catheters and suprapubic drainage methods and in those with relatively more paralysis, more disability (less independence in activities of daily living), one or more pressure ulcers, and less social support, mobility, personal productivity and social integration. 2.4. Pain The study of pain in individuals with SCI is complex and multifaceted. Etiologies vary and individuals differ in their psychological adaptation. In the Model SCI Systems Consensus Conference report [9], upper limb pain, stiffness, or paresthesia were reported by 68% of paraplegic patients greater than 1 year postinjury who were seen for routine follow-up care. All patients over 15 years postinjury had upper extremity symptoms. Shoulder pain from bicipital tendinitis and

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carpal tunnel syndrome were the most common specific diagnoses and were likely complications related to chronic weight-bearing with the upper extremity. In the community-based sample studied by Rintala et al. [14],53% reported experiencing frequent pain and 31 % reported pain severe enough to interfere with daily activities. Waters et al. [15] studied the presence of upper extremity pain in 239 outpatients with SCI who had an average age of 37.4 and average time since onset of 12.1 years. Fifty-five percent of the patients with tetraplegia reported upper extremity pain most commonly at the shoulder. Sixty-four percent of those with paraplegia reported upper extremity pain. Complaints related to carpal tunnel syndrome and shoulder pain were most common. Summers et al. [16] found that 52 of 54 patients . with SCI stated they had pain. Psychological assessments revealed that those who were less accepting of their disability reported greater pain severity. Patients who perceived a significant other as expressing punishing responses to their pain behaviors reported more severe pain. That pain was associated with emotional distress over and above the distress associated with the SCI itself. In the community-based group studied by Rintala et al. [14], frequent pain was reported by significantly more females than males and by more individuals with paraplegia than tetraplegia. Those injured by violence reported pain more frequently than did those injured by falls, motor vehicle crashes or sports. Those reporting frequent pain were older than those without pain and those with pain had a shorter duration of injury that those without.

2.5. Musculoskeletal problems

Among those individuals with SCI of longer duration, joint complaints proliferate. There is documentation both anecdotally and empirically about shoulder joint deterioration, manifested by pain and stiffness which limit function [17-20]. Nicholes et al. [21] reported shoulder pain to be as much as 51 %. Degenerative changes have also been reported in the spine, hip and sacroiliac joints [22]. Among their group of survivors of SCI, Ragnarsson and Sell [23] reported a 6% prevalence of pathologic fractures, a complication of

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bone loss. In the community-based sample reported by Bachelder et al. [24] the prevalence of degenerative joint changes was 54% in the men and 58% in the women. One-third of the sample reported joint pain or soreness. One-fourth of the men and one-half of the women reported decreasing strength and energy levels. Results indicate a greater proportion of individuals with tetraplegia than with paraplegia had joint problems and age was predictive of decreasing strength and energy levels for men and women.

2.6. Nutritional problems Nutritional concerns are perhaps one of the least understood, yet critically relevant areas impacting the long-term physical well-being of individuals with SCI. The undernourished person with SCI has an increased risk of developing pressure ulcers [25]. Achieving and maintaining bowel and bladder control, as well as good urinary tract function, are greatly aided by good dietary habits [26]. Yet only a few studies have heightened our awareness of the nutritional needs of persons with SCI. Barboriak et al. [27] found that caloric intake was below normal in 75% of people with tetraplegia and 47% of people with paraplegia in their sample. Kearns et al. [28] found the weight of the persons with SCI in their study to be approximately 10% below that of comparable able-bodied persons. Lee et al. [29] reported that 53% of their sample had some index of moderate malnutrition. In the community-based sample studied by Fuhrer et al. [13] examining physicians deemed 17% of the men and 35% of the women to be overweight and 13% of the men and 18% of the women to be underweight. The assessment was based on visual examination and measures of height and weight. The imbalance, either positive or negative, between caloric requirements and caloric intake can be the end result of (a) inadequate nutrient intake [30], (b) altered gastrointestinal function [31,32], (c) altered metabolic requirements [33,34], (d) altered physiological function, or (e) altered body composition [35-38]. In 'Aging with a Spinal Cord Injury', Short [39] notes generalized nutritional guidelines designed for non-disabled persons are not appropriate. Clearly, further studies

are needed to establish a basis for dietary 'treatment'. 3. Long-term psychological well-being following spinal cord injury

Issues of psychological well-being continue well past initial rehabilitation for many people with SCI. Some persons experience depression and stress. They may be less satisfied with their lives and they may abuse substances as a means of coping with their SCI (Table 2).

3.1. Depression According to several reports, persons with recent SCI who are undergoing inpatient rehabilitation or who have been discharged to the community for a relatively short time are prone to experiencing depression [40-42]. However, conflicting findings have been obtained regarding depression with SCI of longer duration. MacDonald et al. [43] found depression to be twice as prevalent among a group of 53 individuals with SCI than among the general population. Thirteen percent were assessed to be definitely depressed and 2% to be probably depressed on one measure and 45% were judged to be mildly depressed on another measure. Fuhrer et al. [44] reported that a group of 140 individuals with SCI randomly selected from a community-based sampling frame had higher scores on a measure of depressive symptomatology than the general population and 31 % were assessed to be at particular risk for depression. Contrastingly, Schulz and Decker [45] found the mean depression score for the general population to be very similar to the mean score they obtained for 100 older persons with spinal cord dysfunction. Women with SCI have been found to be more at risk for depression than men. Other variables that have been found to be related to higher levels of depression in persons with SCI include poorer self-assessed health, less perceived control of one's life and health, less available social support, lower sense of self-efficacy in finding ways to meet goals, less social integration, lower productivity, and having a keen sense of responsibility for the welfare of another person [44-49].

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Table 2 Long-term psychological well-being following SCI Long-term outcomes

Problem

Risk factors and correlates

Depression

Some studies have found depression to be more prevalent in the SCI population than in the general population. Other studies have found no significant differences between the groups.

Female Poorer self-assessed health Less perceived control of one's life and health Less social support Lower sense of self-efficacy Less social integration Lower personal productivity Having a keen sense of responsibility for the welfare of another person

Perceived stress

Higher than general population

Female More depressive symptomatology Less life satisfaction Poorer self-assessed health Less social integration (men) Less satisfaction with social support (men)

Life satisfaction

Lower than general population

Less social support Less perceived control over one's life Poorer self-assessed health Less social integration Shorter time since injury Less mobility Less personal productivity Older age Higher mortality

Substance abuse

Alcohol problems -

Male Poorer self-assessed health Not getting enough rest Not eating right Not maintaining an ideal weight More depressive symptomatology More perceived stress Younger age Less education More depressive symptomatology More perceived stress

Marijuana Use -

13-73%

16-26%

3.2. Perceived stress

Individuals with SCI have been found to have higher levels of perceived stress than the general population [50,51], and women with SCI perceived significantly more stress than men with SCI. Higher levels of perceived stress have been found to be related to more depressive symptomatology, less satisfaction with life, and poorer

self-assessed health. For men, it has also been found to be related to poorer social. integration and less satisfaction with social support [51]. 3.3. Life satisfaction

Persons with SCI have been found to have lower levels of life satisfaction than the general population [45,52-55]. Life domains receiving the

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lowest satisfaction ratings by persons with SCI have included their financial situation, employment, and sex life. The highest ratings have been given to social relationships [53,56,57]. More satisfaction with life has been found to be related to more social support, more perceived control over one's life, better self-assessed health, better social integration, greater time since injury, more mobility, greater productivity, younger age, and lower mortality [12,45,53,58,59]. 3.4. Substance abuse

A number of studies have found that a substantial proportion of persons with SCI have problems with alcohol misuse. Estimates of prevalence range from 13% to 73% [60,61]. Young et a1. [62] found that in a study of a randomly selected, community-based sample of persons with SCI, 21 % of the participants had alcohol problems. Both men and women with SCI were more likely to have problems with alcohol than their counterparts in the general population. Alcohol problems were more prevalent among men, and were associated with poorer self-assessed health, not getting enough rest, not eating right, not maintaining an ideal weight, more depressive symptomatology, and more perceived stress [62]. Estimates of marijuana use prevalence among persons with SCI range from 16% to 26% [62,63]. Young et a1. [62] found that women with SCI were more likely to use marijuana than women in the general population but the reverse was true for men. However, nearly equal proportions of men and women in the sample with SCI used marijuana. Marijuana use was associated with younger age, less education, more depression and more perceived stress. 4. Long-term community integration following spinal cord injury

Individuals with SCI face numerous barriers to full community reintegration. Problems occur in the areas of marriage, sexuality, reproduction, parenting, employment opportunities, volunteer work, and other organized community activities (Table 3).

4.1. Marriage

Opportunities for marriage are less for persons with SCI than for persons without disabilities. DeVivo and Richards [64] reported that only 12% of persons treated in model systems who are single at the time of injury marry within 5 years as compared with 35% for the general population of comparable age, gender, and race. For those persons with SCI who are married at the time of injury or who marry after injury, divorce rates are higher than for the general population [62,65]. Women with SCI are particularly at risk for divorce [64,66]. DeVivo et a1. [67] reported that divorce rates among individuals with SCI in the National Model Systems database who married after injury were significantly higher than divorce rates for the general population of the same age and sex. Higher rates of divorce occurred among men, those previously married, those without a college education, and those with thoracic or cervical injuries. Crewe and Krause [68] found that persons with SCI in postinjury marriages reported better sex lives, living arrangements, social lives, health, emotional adjustment, and control over their lives and indicated less loneliness than persons in preinjury marriages. Persons in postinjury marriages were also more likely to be working and socially active outside their homes than those in preinjury marriages. McGowan and Roth [69] found that good family functioning occurred when the person with SCI demonstrated self-initiation of activity, increased social activity, and functional independence. No relationship was found between family functioning and level of injury or duration of SCI. 4.2. Sexuality

The majority of individuals with SCI engage in sexual activity at some time following injury but many find their sex lives frustrating and unsatisfactory [70-74]. Younger age, earlier age at onset, and longer duration of SCI have been associated with a higher likelihood of engaging in sexual activity [73-75]. Relative to other areas of life, sex may not be as important an issue for many persons with SCI as it is sometimes assumed to be.

KA. Hart, D.H. Rintala / NeuroRehabilitation5 (1995) 57-73 Table 3 Long-term community integration following SCI Long-term outcomes

Problem

Marriage

Fewer opportunities for marriage than for general population Preinjury marriages may be less successful than postinjury marriages

Risk factors and correlates

Higher rate of divorce than general population

Sexuality

Fewer persons engage in sexual activity than in general population Sex lives may be frustrating and unsatisfactory Erectile dysfunction Physical concerns (e.g., bowel and bladder accidents) Emotional concerns (e.g. how to cope emotionally with sexual limitations) Lack of gender specific information about sexuality after SCI

Reproduction

Poorer sex lives Poorer living arrangements Poorer social lives Poorer health Poorer emotional adjustment Less control over one's life More loneliness Less employment Less socially active Female Male - postinjury marriages Previously married Less education Older age Older age at onset Shorter time since injury

Male

Female

Infertility Urinary tract infections during pregnancy Autonomic dysrefiexia during delivery T -6 or higher level of injury

Male Female

Parenting

Difficulties in positioning for breastfeeding Decreased milk production after 6 weeks Unavailability of assistive equipment for child care Little information on parenting with SCI

Female Tetraplegia Female T -6 or higher level of injury

Employment

Low rates of employment -

6-44%

Female

Less education Blue collar preinjury occupation Lower preinjury income Less time since injury Poorer functional status Less independence Female Nonwhite Poorer adjustment

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Table 3 (Continued) Long-term outcomes

Problem

Risk factors and correlates Less life satisfaction Lack of feeling of general well-being Poorer physical fitness Less social support Older age Older age at onset More mortality More depression

Volunteer work

Low rates of volunteering -

Other organized community activities

Low rates of participation 54% no organizational memberships 37% church membership only

13%

White et aL [73] found that among 12 life areas, sex life ranked fifth in importance for men with SCI and 10th in importance for women. Most men with SCI have erectile dysfunction. Intercavernous injections, penile prostheses, and vacuum devices are current methods of treatment for this problem [76-79]. Of concern to both men and women with SCI are many physical (e.g., bladder accidents) and psychological issues (e.g., how to cope emotionally with sexual limitations) relevant to sexuality [73,74]. Education and counseling on the issue of sexuality is recommended as an important part of rehabilitation [72,80-82]. Some women expressed a preference for separate educational programs on sexuality for men and women following SCI [73].

4.4. Parenting The role of parent for a person with SCI poses special problems. Craig [83] found no contraindications for breastfeeding; however, women with tetraplegia needed assistance in developing positions that facilitate nursing. Women with SCI at or above the T-6 level, may experience decreased milk production after 6 weeks [83]. This may be due to lack of nipple stimulation. Disposable bottles, back and front baby carriers, modified furniture, and family support play a major role in being able to successfully care for young children [90]. Unfortunately, very little is available in the scientific literature regarding the topic of parenting with an SCI.

4.3. Reproduction Having a child IS Important to many persons with SCI. Women with SCI are able to conceive and have pregnancies similar to those of women without disabilities. Two exceptions are that women with SCI are likely to experience urinary tract infections more frequently during pregnancy and women with SCI above the T -6 level are likely to experience autonomic dysreftexia [70,83,84]. Men have more difficulty with reproduction but results of recent research regarding electroejaculation indicate that motile sperm often can be retrieved and subsequent artificial insemination can lead to pregnancy [85-89].

4.5. Employment and attending school An unacceptably low proportion of persons with SCI are employed for pay compared with the general population. Young et aL [91] found that only 27% of a community-based random sample were employed either full- or part-time. Other studies have also found low rates of employment (6-44%), among persons with SCI but there has been some improvement as duration of injury increases [64,71,92-97]. In addition, a substantial proportion of persons with SCI return to school following injury [98]. Being employed has been found to be related to more education, having a white collar rather

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than a blue collar preinjury occupation, higher preinjury income, longer time since injury, better functional status, more independence, male gender, white race, better adjustment, better life satisfaction, subjective feelings of general well-being, objective measures of better physical fitness, more social support, younger age, younger age at onset, less mortality and less depression [58,59,91,92,95,99-102].

4.6. Volunteer work Volunteering has been shown to be associated with more satisfaction with life, less depression, more self-esteem and other benefits [103-106]. However, Rintala et al. [13] found that of 661 persons with SCI living in the community, less than 13% reported being involved in volunteer activities. 4. 7. Other organized community activities Many individuals with SCI do not participate in organized community activities. Kennedy and Smith [107] reported that on a leisure activity scale, persons with SCI reported more preinjury physical activity than the non-disabled control group; however, their post-injury expectations for future leisure activity involvement were lower than those of the control group. Rintala et al. [108] reported that 54% of a sample of 150 persons with SCI living in the community did not belong to any clubs, churches, or other organizations. Another 37% belonged to a religious organization. Small numbers (less than 10%) of people belonged to a variety of organizations that fell into three broad categories - community service, recreation, and disability-related. 5. Issues in the measurement of long-term outcome following SCI Longitudinal research is particularly dependent on careful consideration in the selection of instruments. Poor choices can lead to useless or misleading results and to the unwillingness of research subjects to participate in any further studies. It remains particularly challenging to attempt to measure and interpret the results as truly being the effect of the injury over time

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rather than the outcomes that would have occurred in the individual's life even without an injury. With many changes in the provision of health care and with communities in general, the measurement and interpretation of results must take into account the sociological changes that are occurring in the general population. For example, a result that indicates the decrease in employability over time of individuals with SCI could actually be reflective of a trend in a lower employment rate in the general population over the years being studied [109]. Because it is complex to effectively measure long-term outcomes following SCI, it is important to use a variety of measures.

5.1. Criteria for selection of instruments Hall [110] provides an overview of criteria to consider in identifying functional assessment scales that is applicable in the selection of instruments for long-term outcomes following SCI. Perhaps first and foremost is to ascertain if the instrument is the most appropriate for the longterm outcome research questions. As more longterm outcome research is published, it is useful to review the instruments that have been used by others and to determine if they remain available at reasonable cost. There is a strength in the knowledge gained in this complex research area if reported results are comparable and reproduced. Administering measures at time intervals relevant to the research question and comparable with previous studies also contributes to the strength and reproducibility of the results. In addition to validity (Le. the degree to which an instrument measures what it claims to measure) and reliability (i.e. the degree to which scores on a measure are reproducible when administered under similar circumstances), it is particularly helpful if the instrument has been standardized for use with individuals with SCI. Functional impairments often require adaptations of instruments for use with individuals with SCI and when these adaptations are made, the validity of comparing results with the instrument's published norms is questionable. It is also critical to select instruments that have norms appropriate for the ages of the individuals throughout the entire study period.

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For example, if a participant enters a 20-year study at age 10, he/she will complete the study at age 30; thus the measures must be appropriate for children and adult participants. The length of time required for administration and the method of administration take on particular significance in the selection of an instrument for longitudinal assessments. Telephone, mail, self-report questionnaire, and individual examination each provide varying degrees of ease of implementation in a long-term follow-up project. On the whole, if all other criteria are met equally, it is better to use a follow-up measure that is brief and easily administered. 6. Selected long-term outcome measures Selected standardized paper-and-pencil, selfreport measures that have been used in past research or are being used in current research by the authors for the assessment of long-term outcome of individuals with SCI are described below. These have been found to meet many of the criteria mentioned above and they are recommended for consideration. 6.1. Physical well-being RAND SF-36. The RAND SF-36 is a questionnaire containing 36 items that assess eight health concepts: physical functioning, bodily pain, role limitations due to physical health problems, role limitations due to personal or emotional problems, emotional well-being, social functioning, energy /fatigue, and general health perceptions including perceived change in health. It can be self-administered, or given as a formal interview. The internal consistency of the eight subscales ranged from 0.76 to 0.90. General population norms are available [111]. The SF-36 is the short form of a longer instrument which was developed by Rand Corporation for a health insurance experiment and has been used in many other studies including the Medical Outcomes Study [112] and has been validated on able-bodied populations in the USA and Britain. 6.2. Psychological well-being Center for Epidemiological Studies - Depression Scale. The CES-D [113] measures symptoms of

depression in the general population. A high level of internal consistency has been established (alpha coefficients range from 0.84 to 0.90) and Radloff [113] reported correlations with other measures of depression ranging from 0.50 to 0.70. Perceived Stress Scale. The Perceived Stress Scale [50] measures the degree to which respondents find their lives to be unpredictable, uncontrollable, and overloading. It has been shown to have high internal reliability (alpha coefficient = 0.78) and acceptable evidence of validity [114]. Life Satisfaction Index - A. The Life Satisfaction Index-A (LSIA-A) [115] measures zest for life, fortitude, congruence between desired and achieved goals, self-concept, and mood tone. It has been shown to have high internal consistency (alpha coefficient = 0.76), and satisfactory concurrent validity with other measures of life satisfaction. Short Michigan Alcoholism Screening Test (SMAST). The Short Michigan Alcoholism Screening Test (SMAST) [116], is a 13-item questionnaire that assesses the occurrence of alcoholrelated behaviors. It has been found to be highly correlated (r = 0.97) with the longer, 25-item version which has been reported to have a test-retest correlation of 0.84 and distinguishes between problem and non-problem drinkers [117,118]. The Drug Abuse Screening Test (DAST). The Drug Abuse Screening Test (DAST) [119], is a 28-item questionnaire that assesses problems related to drug misuse. Internal consistency was reported to be 0.92. Concurrent validity was supported based on relationships with background variables, frequency of drug use in the past year, and psychopathology. 6.3. Community integration Craig Handicap Assessment and Reporting Technique (CHART). The Craig Handicap Assessment and Reporting Technique (CHART) [120] assesses the domains of Physical Independence, Mobility, Occupation (i.e., productive use of time), Social Integration, and Economic Self-Sufficiency. In developing the CHART, normative data were obtained from persons without SCI to establish a measurement scale for each dimension that ranges from 0 to 100, with 100 indicating absence of

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handicap. The CHART has been shown to have good reliability (test-retest correlations ranging from 0.81 for social integration to 0.9S for mobility) and validity (scores on the CHART dimensions accorded well with global judgements of handicap in each area made by rehabilitation professionals familiar with the persons being assessed). Community Integration Questionnaire (CIQ). The Community Integration Questionnaire (CIQ) [121], is a IS-item instrument which was originally designed for use with people with traumatic brain injury (TBI) but which is appropriate for other populations. The test-retest reliability was reported to be 0.91 for individuals with TBL Concurrent validity was supported based on comparisons with the CHART. Family Assessment Device (FAD). The Family Assessment Device (FAD) [122] measures six dimensions of family functioning in addition to a general function scale. The dimensions are problem solving, communication, roles, affective responsiveness, affective involvement, and behavior control. Internal consistency has been shown to be high (alpha coefficients ranged from 0.83 to.90) and test-retest reliability has been acceptable (correlations ranged from 0.66 to 0.76). Parenting Dimensions Inventory (PDI). The Parenting Dimensions Inventory (PDI) [123] measures eight dimensions of parenting - nurturance, sensitivity, non-restrictive attitude, type of control, amount of control, maturity demands, consistency, and organization. It is appropriate for families in which at least one child is between the ages of 4 and 14 years. The PDI has been shown to predict parent ratings of child behavior problems and child social competence. Alpha coefficients on individual dimensions have ranged from 0.40 to 0.82 in several studies. 7. Conclusion Individuals with SCI continue their lives with more problems of physical and psychological well-being than the general population. In many instances the risk factors for these problems have been identified. It is now incumbent upon clini-

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cians and researchers to work together to design interventions to prevent or alleviate these problems and to implement studies to assess the effectiveness of the interventions upon the longterm outcomes of the lives of individuals with SCI. Other problems require additional study in individuals who have lived with SCI for relatively long periods of time. We must continue to develop more effective and efficient measurement techniques appropriate to long-term follow-up. Most importantly, we must develop systems of follow-up and care that are feasible within today's economic climate but that continue to meet the multifaceted needs of people with SCI throughout their lifespan. References [1]

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