Kalpakjian et al. 2011 ;

USA

Longitudinal

Downs &Black = 18

N = 6141

Population: Individuals with paraplegia and tetraplegia, complete and incomplete; Mean age = 39.0; Mean YPI = 1.0; Male = 4864

Methodology:Subjects studied at 1 to >5 time points at 1 and 5 YPI, and every 5 years after.

1. Life satisfaction was shown to improve over time.
2. Life satisfaction of those separated or divorced increased over time and do so to a greater degree for women (p=0.03).

Savic et al. 2010 ;

Britain

Longitudinal

Downs &Black = 16

N = 122

Population: Individuals with SCI complete and incomplete tetraplegia and paraplegia;Mean age = 48.0; Mean YPI = 26.8; Male = 103

Methodology: Subjects studied atsix points in time (1990; 1993; 1996; 1999; 2002; and 2006)

1. 76% consistently rated good or excellent QoL over 16 years.
2. Differences in life satisfaction was observed over the 16 year period (p=0.0057).
3. Life satisfaction was highest in the 2006 follow up.

DeVivo & Chen 2011 ;

USA

Longitudinal

Downs &Black = 15

N = 1,591

Population: Individuals with paraplegia and tetraplegia, complete and incomplete; Mean age = 39.5; Mean YPI = 1.0

Injury severity = no data

Methodology: Subjects studied at seven time points at 1, 5, 10, 15, 20, 25, and 30 YPI.

1. There were decreasing numbers of respondents at each follow up. There was a low of N = 486 at 30 YPI.
2. Life satisfaction consistently increased over the 30 years of observation.

Mortenson et al. 2010;

Canada

Longitudinal

Downs &Black =15

N = 93

Population: Individuals with paraplegia and tetraplegia, complete and incomplete. Mean age (range) = 39.6 (18-78); Mean YPI = >0.25 post discharge; Male = 83

Methodology: Subjects studied at two time points between 1999 and 2003 (3 months and 15 months post discharge).

1. No QoL differences were observed between time points (p=0.85).
2. Average QLI scores were 19.66 out of 30.

Charlifue & Gerhart 2004a;
USA
Downs & Black = 15
Longitudinal
N = 178

Population: 178 individuals with SCI, ages 43-83 yrs and years post-injury 29-55 at final phase of study.
Methodology: Subjects evaluated at 3 year intervals from 1990-1999.
Outcome Measures: Craig Handicap Assessment and Reporting Technique (CHART), Life Satisfaction Index (LSI-Z), Index of Psychological Well-Being (IPWB), Center for Epidemiological Studies Depression Scale (CES-D), Perceived Stress Scale (PSS).

1. Community reintegration ↓ over time – a significant relationship between perceived life satisfaction and community integration was revealed.

Van Leeuwen et al. 2011;

Netherlands

Longitudinal

Downs &Black = 14

N = 206

Population: Individuals with paraplegia and tetraplegia, complete and incomplete; Mean age (range) = 41.5 (26.2-56.9); Mean YPI = during rehabilitation; Male = 153

Methodology: Subjects studied at six points in time (Beginning of rehabilitation; 3 months after beginning of rehabilitation; at discharge, 1 year post discharge, 2 years post discharge and 5 years post discharge)

1. 56 subjects had consistently low, yet improving, life satisfaction.
2. 34 subjects had consistently high life satisfaction.
3. 63 subjects had intermediate scores.
4. 48 subjects improved their life satisfaction.
5. 5 subjects had deteriorating life satisfaction.

Bushnik & Charlifue 2005;

USA

Downs & Black = 14

Longitudinal
N = 63

Population: 63 individuals, C1-C4, sustained at an average age of 24.2±2.2 years. Average age of analysis is 29.7±8.1 at phase 1, 37.4±8.4 at phase 2 and 43.2±8.4 at phase 3. Average years post-injury at phase 1 = 5.3±2.4, phase 2 = 13.1±2.5 and phase 3 = 18.9±2.6.
Methodology: Subjects assessed 14-24 YPI over three phases of data collection. Phase 1: 1984-1985; Phase 2: 1992-1994; and Phase 3: 1997-1999.
Outcome Measures:  Demographics, respiratory support, assistance with care, psychosocial data, and time utilization data.

1. Over the three phases of data collection, most indicators of quality of life and community participation remained at high levels with little variability. For those indicators that changed, SCI itself and not necessarily a high level of  injury, and/or the aging process accounted for the change over time. Economics and advances in technology were responsible for changes in other indicators.

Krause JS 1997;
USA
Downs & Black =14
Longitudinal
N initial = 347
N final = 235

Population: 235 subjects with SCI, mean age at injury 23.1±9.1 years, mean age and years post-injury at last data collection point were 46.7±10.7 and 23.6±7.4, respectively.
Methodology: Subjects assessed twice over a 9-year period (1985, 1994)
Outcome Measures: Life Situation Questionnaire (LSQ).

1. Objective aspects of life situation remained stable (i.e. frequency of visitors and social outings, sitting tolerance) or increased (i.e. employment rate, hours worked) over the study period; however, subjective well-being diminished.
2. Participants were less satisfied with their lives, reported more problems with dependency, and were more pessimistic when predicting their future adjustment.
3. ↑ in non-routine doctor visits but a ↓ in the number of hospitalizations, reflecting both actual health and changes in health care practices.

Barker et al. 2009 ;

Australia

Downs and Black = 14

Cross-sectional

Population: Individuals with SCI(Tetraplegia = 107; Paraplegia = 100; Others=63); Male = 220; Mean age (range) = 43.0 (20-76); YPI (range) = 15.0 (9-21)

Methodology: Comparison of QoL between SCI and AB groups, and group differences were observed by age.

Outcome Measures: World Health Organization Quality of Life Assessment Instrument (WHOQOL)-Bref

1. QoL was lower than the Australian norm (p<0.001)
2. Overall, mean scores in each of the 4 domains (Physical health, Psychological health, Social Relationships, Environment) were lower for individuals with SCI (p<0.001).
3. Analyses by age group showed significant differences between SCI and norm data in all domains, with the exception of the 60s and over age group that differed in the Physical health domain only (p<0.01).
4. No differences were detected between people with SCI of different ages and times since injury.

Krause & Broderick 2005;
USA
Downs & Black = 13
Longitudinal
N initial = 161
N final = 95

Population: 95 individuals with SCI, mean age 53.8±9.2 yrs and mean YPI 32.2±5.6 yrs at follow-up
Methodology: Subjects assessed twice over a period of 25 years (1974 & 1998)
Outcome Measures: Life Satisfaction Questionnaire (LSQ).

1. Employment outcomes improved; rate and satisfaction increased.
2. Participants continue to adapt to aging with SCI (↑ adjustment scores), yet experience declines in health (↑ number of physician visits) and social activities (↓ number of outings and visitors) that were associated with diminished satisfaction with particular areas of life (i.e. social and sex lives).

Charlifue et al. 1999;
USA
Downs & Black = 13
Longitudinal
N enrolled = 439
N final = 315

Population: 315 individuals with SCI, age 37.1±0.6 years, years post-injury 9.3±0.2.
Methodology: Subjects studied initially at their 5th, 10th, and 15th anniversaries post-injury and subsequently 5 years later at their 10th, 15th, and 20th anniversaries post-injury.
Outcome Measures: Physical and psychosocial status.

1. Between time 1 and time 2, self-reports of constipation, bladder stones, rectal bleeding, and personal well-being scores decreased (­ in well-being). Participants also reported requiring more physical assistance
2. Para AIS ABC group reported significantly more fatigue between Time 1 and 2. Tetra AIS ABC group reported an increase in the need for physical assistance but had fewer reports of constipation, bladder stones and bleeding.

Van Koppenhagen et al. 2009;

Netherlands

Downs &Black = 12

Longitudinal

N = 222

Population: Individuals with complete and incomplete tetraplegia and paraplegia (Tetraplegia complete= 54, Paraplegia complete= 96, Other = 38); Mean age (range) = 41.5 (18-65); YPI = <0.9; Male = 165

Methodology: Subjects studied at four points in time (Beginning of rehabilitation; 3 months after beginning of rehabilitation; at discharge and1 year post discharge)

1. Individuals unsatisfied with their life decreased from 74.6% at time 1 to 49.3% at time 4.
2. Individuals with deterioration in life satisfaction after SCI decreased from 85.8% at time 1 to 75.3% at time 4.
3. There was a significant increase in life satisfaction total scores between times 1 and 3, and stable scores from times 3 to 4.

Bushnik 2002;

USA
Downs & Black = 12
Longitudinal
N = 58

Population: 58 individuals with complete high tetraplegia (C1-C4). Average age of analysis is 29.5±8.4 at phase 1, 37.3±8.7 at phase 2, 43.0±8.7 at phase 3. Years post injury (YPI) was 4.8±2.2 at phase 1, 12.7±2.4 at phase 2, 18.5±2.4 at phase 3.
Methodology: Subjects assessed up to 24 YPI over three phases of data collection. Phase 1: 1984-1985; Phase 2: 1992-1994; Phase 3: 1997-1999.
Outcome Measures: High Tetraplegia Questionnaire (HQQ) consisting of questions regarding assistance with care, respiratory support, special equipment, and costs, participation in work and leisure activities; Modified Level of Free Time Activities Scale; Rosenberg Self-Esteem Scale (RSE).

1. An association between access to modified vans and perceived QOL was revealed. The proportion of individuals who rated their lives as “good or excellent” was higher in all three phases for those with modified vans, reaching statistical significance in Phases 2 and 3 (p<0.02).
2. There were no significant changes in equipment utilization nor self-esteem or subjective QOL across time periods.
3. Participation in at-home leisure activities (e.g., reading, listening to the radio) significantly ↓ from Phase 1 to Phase 2 (p < 0.01)
4. Older individuals spent fewer hours per day out of bed and fewer days per week out of the house than younger participants (p < 0.01) in Phase 1.  In Phase 3, older individuals participated in fewer leisure activities at home than younger participants (p = 0.01).
5. Income ­ over time for the sample.

Charlifue et al. 1998;

USA

Downs & Black = 12
Longitudinal
N = 227

Population: 227 individuals with SCI, years post-injury  at enrollment >20, age at injury 15-55 yrs, mean age 54.9 years and mean  years post-injury  30.0 at final phase of study.
Methodology: Subjects contacted twice over a 3-year period (1990 and1993).
Outcome Measures: Health and functional status (physical exams), self-perceived health, Functional Independence Measures (FIM), Craig Handicap Assessment and Reporting Technique (CHART), Life Satisfaction Index (LSI-Z), Index of Psychological Well-Being (IPWB), the Center for Epidemiological Studies Depression Scale (CES-D), Perceived Stress Scale (PSS), Current Problem Questionnaire.

1. LSI-Z scores ↓ over time. These were statistically significant only for the older age groups, those injured less than 30 years or more than 40 years, and those with complete paraplegia.
2. Those who scored high on the LSI-Z experienced higher social integration 3 years later. Those who drank more also had higher social integration scores.
3. Those who reported feeling generally healthy were only ¼ as likely to experience fatigue 3 years later, while those who reported fatigue previously were more than 5 times more likely to still feel fatigue 3 years later.

Krause 1998

USA

Downs &Black = 12

Longitudinal

N = 114

Population: Individuals with SCI(Tetraplegia = 67, Paraplegia = 47); Mean age = 29.9; Mean YPI = 8.7; Male = 95

Methodology: Subjects studied at four points in time (1974; 1985; 1989; 1994).

1. Satisfaction with employment increased over 20 years (p<0.05).
2. Satisfaction with living arrangements improved at each time point, and general health worsened (n.s.)
3. Satisfaction with finances, social and sex lives worsened overall (n.s.).

Stensman 1994

Sweden

Downs & Black = 12

Longitudinal

N = 17

Population:Individuals with paraplegia and tetraplegia, complete and incomplete; Mean age = 32.4; Mean YPI = 0.5; Male = 15

Methodology: Subjects studied at six time points at 0.5, 1, 2, 3, 4, 5 YPI.

Outcome Measure: Single item to measure perceived QoL

1. 5 subjects had consistently high QoL.
2. 6 had low QoL between 0.5 and 3 years, and improvements thereafter.
3. 2 had variable QoL over time, influence by variable pain.
4. 4 had consistently low QoL, influenced by constant pain.

Krause 1992

USA

Downs &Black = 12

Longitudinal

N = 135

Population: Individuals with SCI(Tetraplegia = 91; Paraplegia = 44); Mean age = 30.6; Mean YPI = 9.2; Male = 110

Methodology: Subjects studied at two points in time (1974; 1989).

1. Satisfaction with employment and finances increased (p<0.05).
2. Satisfaction with social life and general health decreased (n.s.).

Crewe & Krause 1990

USA

Downs &Black = 12

Longitudinal

Population: Individuals with SCI(Tetraplegia = 95; Paraplegia = 58); Mean age = 32.0; YPI = 10.0; Male = 124

Methodology: Subjects studied at two points in time points (1974; 1985).

1. Satisfaction with employment increased over 11 years (p<0.01).
2. Satisfaction with living arrangements, finances, and social life (n.s).
3. Satisfaction with sex life remained the same, and satisfaction with general health worsened (n.s.).

Charlifue & Gerhart 2004b;
USA
Downs & Black = 11
Longitudinal
N=189

Population: 189 males and females with SCI, ages 43-83 yrs and YPI 29-55 at final phase of study.
Methodology: Subjects evaluated at 3 year intervals from 1990-1999.
Outcome Measures: Life Satisfaction Index (LSI-Z), Index of Psychological Well-Being (IPWB), Center for Epidemiological Studies Depression Scale (CES-D), Perceived Stress Scale (PSS); Perceived Quality of Life.

1. LSI-Z scores were significantly correlated with perceived quality of life 3 years later at all three data points.
2. Previous scores on perceived quality of life were correlated with perceived well-being 3 years later at all three data points.
3. Being male, older, longer injured, and having functionally complete tetraplegia were related to worse outcomes.

Krause & Coker 2006; USA
Downs & Black = 11
Longitudinal
N initial = 256
N final = 78

Population: 78 respondents with SCI, mean age 55.7±7.6 yrs and mean YPI 35.8±4.7 at follow-up. Mean age at enrollment 35.1±13.9 yrs and mean years post-injury at enrollment 9.7±6.9.
Methodology: Subjects assessed 3 times over a 30-year period (1973, 1988, 2002).
Outcome Measures: Life Situation Questionnaire (LSQ).

1. During the first 15-year period, ↑ were seen in sitting tolerance, educational and employment outcomes, satisfaction with employment, and adjustment.
2. During the last 15 years, sitting tolerance ↓, the number of physician visits increased, and satisfaction with social life and sex life ↓.

Krause et al. 2009 ;

USA

Downs &Black = 9

Longitudinal

N = 250

Population: Individuals with SCI(Tetraplegia = 133; Paraplegia = 117); Mean age = 42.5;YPI = 14.0; Male = 142

Methodology: Subjects studied attwo points in time 6 years apart.

1. Differences in the satisfaction domain did not systematically or significantly increase or diminish over time.

Kemp & Krause 1999
Downs & Black = 9
Longitudinal
N SCI = 177
N controls = 62

Population: 177 males and females with SCI, mean age at onset 25.5, mean age at enrollment 40.1years; 62 healthy males and females, mean age at enrollment 63.7 years
Methodology: Comparison of life satisfaction and depression between the 2 groups
Outcome Measures: 10-item scale to evaluate life satisfaction

1. The AB comparison group had significantly greater satisfaction than the SCI group in life areas related to: health, health care, finances, friendship, emotional health, housing, work or time use, leisure, and overall life.

Putzke et al. 2002b;

USA
Downs & Black = 9
Longitudinal
N = 270

Population: Individuals with paraplegia and tetraplegia, complete and incomplete.
Methodology: Subjects studied at 1 and 2 years post-injury.
Outcome Measures: Life satisfaction, physical and mental health.

1. Those developing pain (i.e. pain-free at year 1 and in pain at year 2) reported decreased life satisfaction, physical and mental health, whereas those resolving pain from year 1 to year 2 reported an increase in the same domains.
2. Change in pain interference status was unrelated to change in self-reported handicap.