Aging Table 15: Quality of Life and Community Reintegration

Author Year; Country
Score
Research Design
Total Sample Size

Methods

Outcome

Celik et al. 2017;

Turkey

Level 2 evidence

Longitudinal

N=40

Population: Group 1 (n=20; 13 M, 7 F): mean age (y)=23.9±5.83 (range 18-44), mean YPI=9.35±6.06 (range 3-29), mean age at injury (y)= 14.6±2.8

Group 2 (n=20; 10 M, 10 F): mean age (y)=43.85±12.77 (range 30-79), mean YPI=8.7±7.95 (range 1-31), mean age at injury (y)=33.1±16.6

Methodology: Depending on whether participants sustained their SCI <18 years old or >18 years old, they were categorized into Group 1 and Group 2, respectively, to investigate the factors that affect disability and QoL in people who sustained their SCI either before or after 18 years of age.

Outcome Measures: Craig Handicap Assessment and Reporting Technique (CHART), World Health Organization Quality of Life Scale Short Form (WHOQOL-Bref), Beck Depression Inventory (BDI)

  1. QoL scores were significantly higher for those that sustained their SCI after 18 years old. No differences between the 2 groups were found on BDI and CHART scores.
  2. No significant correlation was found between age of SCI onset, disease duration, ASIA scores, depression scores, total CHART scores for all patients.

Jorgensen et al. 2017;

Sweden

Level 5 evidence

Cross-sectional
N=119

Population: N=119 (84 M, 35 F); mean age (y)=63.5±8.7 (range 50-89); mean TSI (y)=24±11.7 (range 10-56);

Injury level and severity: Tetraplegia AIS A-C (18%), paraplegia AIS A-C (33%), all AIS D (50%);

Working full/part-time (36%), disability pension/old-age pension (64%)

Methodology: Data was collected from the larger Swedish Aging with Spinal Cord Injury Study longitudinal cohort survey assessing individuals ≥50 years old and at least ≥10 YPI. Participants were interviewed to describe all activities performed during the past 3 days to study the participation in leisure time physical activity (LTPA) among older adults with long-term SCI.

Outcome Measures: Physical activity recall assessment to determine LTPA, SHCs (bowel-related and bladder related problems, spasticity and pain)

  1. 29% reported no LTPA, whereas 53% performed moderate-to-heavy intensity LTPA.
  2. The mean minutes per day of total LTPA was 34.7 and of moderate-to-heavy LTPA, 22.5.
  3. The most frequently performed activities were walking and wheeling.
  4. Age and wheelchair use were significantly and negatively associated with total LTPA.
  5. Women, wheelchair users and employed participants performed significantly less moderate-to-heavy LTPA than men, those using walking devices/no mobility device, and unemployed participants.

Krause et al. 2016;

USA

Level 2 Evidence

Longitudinal
N=49

Population: N=49 (85.7% M) at 40-year follow up; mean age (y)=64.9±5.0, mean YPI=45.9±4.1;

55.1% had cervical injuries, 53.9% reported sensation below the level of lesion, and functionally, only 10.4% could walk.

Methodology: Participants were identified from outpatient records of a Midwestern USA university hospital in 1973. Follow-ups were conducted in 1984 and approximate 10-year intervals thereafter to explore the natural course of aging after SCI by identifying changes in participation, employment, health and quality of life outcomes over 40 years.

Outcome Measures: Life Situation Questionnaire (LSQ), employment rate, hours employed

  1. Proportion of individuals with 10+ non-routine physician visits increased from consistently <10% to >40% during the 40 years. Proportion who spent a week or more in hospital increased from a low of 10% at 20-year follow-up to 43% at 40-year follow-up.
  2. Employment rate and average hours employed initially improved in the first two decades (49% to 71%) but decreased substantially during the last two decades of measurement (69% to 27%).
  3. Satisfaction with health, sex life and social life declined over time, whereas satisfaction with employment improved initially and was maintained over time. Self-rated current adjustment remained stable, whereas predicted future adjustment declined steadily over 40 years.

Lofvenmark et al. 2016;

Sweden

Level 2 evidence

Longitudinal
N=38

Population: Attended YC (n=27, 67% M): mean age (y)=33±13; AIS A-C (78%), AIS D (22%); tetraplegia (44%), paraplegia (56%); Wheelchair user (81%), ambulatory (19%)

No YC (n=11, 82% M): mean age (Y)=29±13; AIS A-C (54%), AIS D (46%); tetraplegia (64%), paraplegia (46%); Wheelchair user (54%), ambulatory (46%)

 

Methodology: All people who were admitted with a traumatic SCI during a 2-year period and survived to be discharged in a national SCI rehab center in Botswana were included as participants. Data was collected at the yearly controls (YCs) to describe the clinical and functional outcomes 2 years after traumatic SCI.
Outcome Measures: AIS scale, motor FIM scores, bladder management methods, sexual function, return to work, other complications and mortality.

  1. 27 people (71%) attended YCs, of whom 14 attended both the first and second year. People complying with follow-up had a higher rate of complete injuries, etiology of road traffic crashes and secondary complications during in-patient care, especially pain.
  2. Age, gender, distance to the center and education did not affect the follow-up rate.
  3. Women rated ‘physical health’ significantly lower compared with men
  4. 59% experienced pain, 41% experienced UTIs, 48% experienced pressure ulcers, and 56% experienced spasticity but no deaths were reported
    One-third of the participants at follow-up had returned to work

Lundstrom et al. 2016;

Sweden

Level 5 evidence

Cross-sectional
N=73

Population: N=73 (55 M, 18 F); mean age (y)=64.7±9.4 (range 50-87), mean TSI (y)=36.2±9.2; AIS A (56.2%), AIS B (6.8%), AIS C (16.4%), AIS D (20.5%);

TSI 20-35 years (n=33); TSI 36-55 years (n=40)

Methodology:  Surveys were conducted through the phone to collect information about the relationship between participation in activities and secondary health complications (SHCs) among persons aging with traumatic SCI. Final sample was split into two groups: YPI (years post-injury) 20-35 years and YPI (years post-injury) 36-55 years

Outcome Measures: 10 activities from the PARTS/M-v3 (PARTicipation Survey/Mobility version-3), medical records

  1. No statistically significant relations were found between the use of assistive devices and age or time since injury. However, worth mentioning is that the participants in the group 36–55 YPI were always using assistive devices for mobility and used powered wheelchairs to a greater extent compared with the participants in the group 20–35 YPI.
  2. ~70% were participating in dressing and bathing independently, and they were evenly distributed between the group 20–35 and 36–55 YPI. Among the remaining 30% who participated in these activities with the help from personal assistants, approximately two-thirds were in the group 36–55 YPI.
  3. Particularly for those who lived 36–55 YPI; increasing pain, fatigue, spasticity and decreased muscle strength were negatively affecting participation in activities, especially exercise and active recreation. Additionally, a need to save strength/energy was also a reason for not participating in the activities. Perceived future support and concerns in relation to personal assistance, assistive devices and rehabilitation was also reported.
  4. No statistically significant relations between participation in activities and age or time since injury.

Newman et al. 2016;

USA

Level 5 evidence

Cross-sectional observational

N=768

Population: N=768 (71.9% M, 28.1% F); mean age at time of study (y)=54.3±11.9; mean TSI (y)=27±10.2; nonambulatory high tetra C1-C4 (8.9%), nonambulatory low tetra C5-C8 (28.1%), nonambulatory para (37.1%), ambulatory (25.9%)

Methodology: The most recent data from collected from the SCI Longitudinal Aging Study first initiated in 1973 to develop and test the fit of a conceptual model of social isolation incorporating social disconnectedness and perceived isolation, and to evaluate the relationships between social disconnectedness and perceived isolation within an aging sample of participants with SCI through structural equation modeling.

Outcome Measures: Life Situation Questionnaire (LSQ), Craig Handicap Assessment reporting Technique (CHART), Patient Reported Outcomes Measurement Information System (PROMIS), indicators of social isolation

  1. Social disconnectedness was predicted by observed marital status, number of people in the household, frequency of getting visitors, frequency of getting away for social activities or entertainment, number of days getting out, and spending nights away from home (excluding hospitalization), and hours per week to do volunteer work. Participants who were single, less likely to go out, get away from home and do volunteer work, and lived in a smaller household were more likely to have higher level of social disconnectedness.
  2. Social disconnectedness was significantly associated with injury severity and chronologic age; perceived isolation was significantly associated with race; and both social disconnectedness and perceived isolation were significantly associated with years postinjury.
  3. Chronologic age demonstrated a significant relationship with social disconnectedness, in that older participants were more likely to report higher levels of disconnectedness.
  4. Greater time since injury was related to less objective and subjective social isolation after controlling for the effect of aging

Pretz et al. 2016;

USA

Level 2 evidence

Longitudinal
N=4846

Population: N=4846 (78.1% M, 21.9% F); mean age at injury (y)=30±12; AIS D-E (19%), T1-S3 AIS A-C (41.5%), C5-C8 AIS A-C (25.0%), C1-C4 AIS A-C (11.1%)Methodology: The population sample was taken from the NSCID for individual growth curve (IGC) analysis. Data was collected during initial hospitalization and at post-injury years 1, 5, and 10, and every 5 years thereafter to describe individual trajectories of life satisfaction after SCI.

Outcome Measures: Rasch-transformed Satisfaction With Life Scale (RTSWLS)

  1. Initial life satisfaction, although varying with each individual, is relatively low but steadily increases over time. Those who have higher initial life satisfaction still experience increased life satisfaction over time but to a lesser extent than those who had lower initial life satisfaction scores.

Cao et al. 2015;

USA

Level 2 evidence

Prospective Longitudinal

N=1635

Population: Baseline-> age at injury (years)= 32.98±13.83; YPI= 12.79±9.61; Male (74.01%);

Nonambulatory cervical (34.8%), nonambulatory noncervical (33.95%), ambulatory (31.25%)

Methodology: Participants were recruited from a Southeastern United States hospital. Subjective health and environmental barriers experienced by the participants were measured at baseline (time 1) and at a follow-up survey 5 years later (time 2).

Outcome Measures: Craig Hospital Inventory of Environmental Factors- Short Form (CHIEF-SF), two health status items from the Behavioral Risk Factor Surveillance System Survey Questionnaire (physical health “not good” and mental health “not good”).

  1. Average days physical health “not good” within the past 30 days increased from 6 days to 7 days at the 5-year follow up. No significant changes for days mental health “not good”.
  2. Physical/structural barriers and services/assistance barriers were also significant predictors of days mental health “not good” measured at time 2
  3. A one point increase of the physical/structural barriers impact score related to almost half day (0.42) physical health “not good”. One point increase of the services/assistance barriers impact score was associated with 1 day (1.07) physical health “not good”.
  4. 19.7% of participants reported impacts from policies barriers; 46% reported impacts from physical/structural barriers; 13.2% encountered work/school barriers; 22.4% had attitudes/support barriers; and 26% reported services/assistance barriers.

Cao et al. 2015;

USA

Level 2 evidence

Longitudinal

N=1032

Population: Male: n=710 (68.9%); Age at injury (years)= 29.09±13.83;YPI= 13.27±9.21

Married or cohabiting (MC): n=409 (39.7%); Divorced, separated, or widowed (DSW): n=224 (21.8%); Single (S): n=397 (38.5%)

Nonambulatory cervical: n=505 (48.9%); Nonambulatory noncervical: n=351 (34%);

Ambulatory: n=176 (17.1%)

Methodology: Participants identified from outpatient records of three hospitals were surveyed 5 times over a 20-year period in 1993, 1998, 2003, 2008, and 2013 to measure multiple aspects of SWB to examine the relationship between marital status and SWB over time for people with chronic SCI.

Outcome Measures: Life Situation Questionnaire-Revised (LSQ-R)

  1. At initial status: DSW and S individuals had significant lower scores in home satisfaction and vocational satisfaction than the MC individuals, and encountered significantly more problems in isolation, distress, environmental barriers, money problems. DSW individuals also reported a lack of opportunities.
  2. After 20 years: The MC group enjoyed the best SWB at baseline, but their home satisfaction and global satisfaction declined over time and their social isolation increased slightly.
  3. DSW and MC groups both had improvements in SWB but DSW had a greater rate of improvement; with increased home satisfaction, decreased isolation, distress, environmental barriers, money problems, and opportunities problems.
  4. For the S group, SWB trajectories were very similar to the MC individuals, except they experienced a significant increase in health problems
  5. All 3 groups experienced less environmental barriers

January et al. 2015;

USA

Level 2 evidence

Longitudinal
N=177

Population: N=177 (62.1% M); Mean age (y)=33.5±7.1 (range 19-50); Mean age at injury (y)=13.5±4.6 (range 0-18); Mean injury duration (y)=19.5±8.2 (range 1-43);

tetraplegia (56.5%); complete injury (70.6%)

Methodology: Adults who sustained a SCI before 19 years of age were recruited from the Shriners Hospitals for Children SCI database. Annual interviews were completed by participants between 2010-2014 that involved assessment of sleep to examine the prevalence of poor sleep quality in adults with pediatric-onset SCI and to asses the clinical correlates. Sample norms for controls and sleep-disordered patients were taken from published norms established for the PSQI.

Outcome Measures: Pittsburgh Sleep Quality Index (PSQI), 12-item Short-Form Health Survey Version 2 (SF-12v2), Beck Anxiety Inventory (BAI), Patient Health Questionnaire (PHQ-9), Satisfaction With Life Scale (SWLS)

  1. Adults with pediatric-onset SCI report significantly more sleep difficulties across domains than the standardization sample norms, but significantly fewer problems than the sleep-disorder patient norms.
  2. Problems initiating and maintaining sleep were the most frequently mentioned sleep disruptions, but difficulties sleeping due to pain and bathroom needs were also prevalent. Sleep quality appeared to deteriorate with increased age, and was independently related to measures of psychosocial health and well-being.
  3. Sleep difficulties were fairly common; with half of participants self-reporting poor sleep quality within the last month (n = 91; 51.4%).
  4. Both increased age and tetraplegia were significantly associated with poor sleep. Activity-interfering pain and general health were also strongly associated with poor sleep.

Marcel et al. 2015;

The Netherlands

Level 5 evidence

Cross-sectional
N=128

Population: Age at injury <50 years (n=48, 64.6% M): mean age (y)=68±4, mean age at injury (y)=33.5±20, mean TSI (y)=34±18; nontraumatic SCI (33.3%); paraplegia (65.2%), incomplete injury (41.7%);

Age at injury ≥50 years (n=79, 63.3% M): mean age (y)=70±8, mean age at injury (y)=62±10±, mean TSI (y)=8±8; nontraumatic SCI (54.4%); paraplegia (67.1%), incomplete injury (60.8%)

Methodology: Surveys were completed to study levels of participation and life satisfaction in individuals with SCI aged 65 or older and to analyze differences in participation and life satisfaction scores between individuals injured before or after 50 years of age. Age at injury was dichotomized as <50 or ≥50 years of age.

Outcome Measures: Frequency scale of the Utrecht Scale for Evaluation of Rehabilitations-Participation (USER-P), 5 items from the World Health Organization Quality of Life abbreviated form (WHOQOL-BREF).

  1. Participants injured <50 years of age reported higher participation and life satisfaction scores than participants injured at older ages. The strongest difference was seen in productive activities.
  2. Participants injured before 50 years of age performed unpaid work and household work more often than participants injured later in life.
  3. Higher life satisfaction scores were bivariately associated with a longer time since injury, lower age at onset, higher education, having traumatic SCI, and having fewer SHCs. In the multiple regression analyses, only lower age at onset and higher education were significant independent determinants of life satisfaction, and the amount of explained variance was low
  4. Higher participation scores were bivariately associated with lower current age, a longer time since injury, lower age at onset of SCI, higher education, male gender, traumatic SCI, higher functional status, and fewer SHCs. In the multiple regression analyses, lower current age, higher education, and having paraplegia were significant independent determinants of participation.

Piazza et al. 2015;

USA

Level 5 evidence

Cross-section w/ AB
N SCI=239

Population:  NSCI=239; mean age (y)= 50.3±11.5, mean TSI (y)=20.3±11.66 (range 5-65); tetraplegia (52%), paraplegia (47%)

Methodology: An SCI sample and non-SCI sample (NSDE II) were approximately age and gender matched. Both groups were interviewed about their affective experiences among the community to examine whether there are age differences in daily affect and affective reactivity to daily stressors between a sample of participants living with significant functional disability and a sample of healthy non-injured adults.

Outcome Measures: Activities of Daily Living (ADL), chronic health conditions, daily negative affect (NA), daily positive affect (PA), Daily Inventory of Stressful Experiences (DISE)

  1. Among non-injured adults, older age was associated with lower levels of daily negative affect (NA), higher levels of daily positive affect (PA), and less negative affective reactivity in response to daily stressors.
  2. In contrast, among SCI participants, no age differences emerged with regards to NA, PA, and affective reactivity in response to daily stressors.

Silverman et al. 2015;

USA

Level 2 evidence

Longitudinal

N total=1594
N SCI=414

Population: 1594 participants (64% F) that included people with SCI (n=414), MD (n=282), MS (n=509), and PPS (n=389);

Mean age (y)=56.0±12.9 (range 20-94); mean disability duration (y)=15.3±10.5

Methodology: Community-dwelling individuals aging with a physical disability (MS, MD, PPS, or SCI) were sent an initial survey (t1) and those who completed and returned it were sent 3 more surveys over the next 3 years, approximately 1 year apart (t2-t4) to investigate the effects of resilience on change in functional outcomes over time

Outcome Measures: Patient Health Questionnare-9 (PHQ-9), Patient Reported Outcomes Measurement Information System (PROMIS), Connor-Davidson Resilience Scale (CD-RISC-10)

  1. Greater baseline resilience predicted a decrease in depressive symptoms and an increase in social functioning 3 years later but was not associated with change in physical functioning.

Cao et al. 2014;

USA

Level 2 evidence

Prospective Longitudinal
N=863

Population:  N=863, 72% M, 28% F; Mean age (years): 38.86±11.82; Mean years post injury: 9.4 ±6.31; Ambulatory 22.75%, non-ambulatory: 77.25%Methodology: Participants with SCI were recruited from a rehabilitation hospital in Southeastern United States. A baseline survey (1997-1998; Time 1) and a follow up survey (2008; Time 2) was completed 10 years apart to examine the relationship between unmet expectations and depressive symptoms among people with chronic SCI.

2 groups were formed: those that experienced unmet expectations (N=421), and those with met expectations (N=419)

Outcome Measures: 22-item Older Adult Health and Mood Questionnaire (OAHMQ), “unmet expectations of adjustment” 10-point ladder (1=worse, 10=best adjustment), Reciprocal Social Support Scale (RSSS), probably major depression (PMD)

 

  1. There was no significant difference between people with unmet expectations and those without on either OAHMQ total score or PMD at the baseline.
  2. 10 years later, the unmet expectations groups’ OAHMQ total score was 2.2 points higher than the met expectations group, thus the unmet expectations group was more likely to have PMD at follow-up.
  3. Unmet expectations of adjustment after TSCI are positively associated with depressive symptoms

Cao et al. 2014;

USA

Level 2 evidence

Prospective Longitudinal

N=434

Population: At baseline (1998), participants averaged 44 years of age (SD 11) and 14 years of education (SD 3); The mean (SD) age at injury was 26 (11). The majority of participants were White (81%) and male (68%) and 43% were married;

52% incomplete injuries, 48% complete injuries;

About half (52%) had an annual household income of $25K or more, 27% had between $10K and $24,999, and 21% had household income less than $10K.

Methodology: Participants with SCI were identified from 2 midwestern hospitals and a southeastern rehab hospital. Three measurements collecting the association between household income and subjective well-being (SWB) were collected over a period of 10 years (1998, 2003, 2008)

Outcome Measures: Life Situation Questionnaire-Revised (LSQ-R), annual household income (less than $10K, $10K-$25K, $25K and more)

  1. Health problems for all 3 income groups increased to some extent during 10-year period, but the low-income group appeared to increase faster than other groups.
  2. Global satisfaction mean scores for all groups dropped across 10 years.
  3. For environmental barriers, it appeared that the participants with an income of $25K or more experienced a decrease, whereas those with an income less than $10K had a modest increase across 10 years.
  4. The low-income group’s vocational satisfaction increased over 10 years, whereas the rates of change for the other 2 groups did not change significantly.

Hernandez et al. 2014;

USA

Level 2 evidence

Longitudinal
N total=662

N SCI= 144

Population: SCI group: n=144, mean age (y) = 37.33±15.02;

Burns group: n=260, mean age (y) = 39.97±16.97;

IAF group: n=260, mean age (y) = 44.33±17.83

75.5% of all participants had moderate to serious injuries

Methodology: Participants were a subset of a larger longitudinal study conducted by the Injury Control Research Center at the University of Alabama and were taken from a set of hospitals. Outcome measures were administered 12, 24, 48, and 60 months post discharge to study life satisfaction trajectories over the first 5 years following medical discharge for an SCI, burn injury, or interarticular fractures (IAF). Data was collected through interviews

Outcome Measures: Functional Independence Measure (FIM), Family Satisfaction Scale (FSS), Life Satisfaction Index (LSI), marital status.

  1. There were significant differences between injury groups for functional impairment (FIM). At initial measurement, individuals with an SCI had significantly greater functional impairment than individuals with an IAF or burns
  2. Trajectory modeling revealed that greater functional impairment significantly predicted lower life satisfaction, regardless of injury type. However, this association diminished when marital status and family satisfaction were entered into the models. Greater family satisfaction and being married predicted greater life satisfaction across time.
  3. Being single or separated significantly predicted lower life satisfaction, regardless of injury type
  4. Individuals with burns had lower life satisfaction than the other two injury groups across all measurement occasions

January et al. 2014;

USA

Level 2 evidence

Longitudinal
N=214

Population: N=214 (133 M, 81 F); mean age at injury (y) = 13.93±4.37 (range 0-18); Duration of injury (y) = 15.05±6.21 (range 5-34)

Injury characteristics: Paraplegia (n=90), tetraplegia (n=124); complete (n=151), incomplete (n=60)

Work & relationship status: Unemployed (n=70), employed (n=98), student (n=46); married (22.9%), not married (77.1%)

Methodology: A longitudinal cohort survey was given over a period of 2 to 9 years (between 2000-2013) with an annual follow up to investigate the prevalence of depressive symptoms in adults who sustained a SCI before 19 years of age and to explore potential risk factors that may be associated with elevated symptoms.

Outcome Measures: Craig Handicap Assessment and Reporting Technique (CHART), Patient Health Questionnaire-9 (PHQ-9), Functional Independence Measure (FIM)

  1. Depression symptoms at initial status were typically minimal but fluctuated significantly over time.
  2. Several factors emerged as significant predictors of depressive symptoms in the final model, including less community participation, incomplete injury, hazardous drinking, bladder incontinence, and pain. Within individuals, as bowel accidents, pain and depression increased; however, marriage resulted in decreases in depression scores for individuals.
  3. Those who are employed and more independent in the community (had significantly lower depressive symptoms at baseline.
Population: N=144 (108 M, 36 F); Mean age (y)=37; 35.4% single, 45.1% married, 11.1% divorced, 4.2% separated, 4.2% ‘other/unknown’;

Mean days in inpatient rehabilitation= 36 (range 0-365); mean days in outpatient rehabilitation=81 (range 0-840)

Methodology: Participants were a subset of a longitudinal study examining adjustment following traumatic disability conducted by a university research center in the southeastern region of the United States. A trained interviewer collected data from individuals who consented to participate in the study at 12, 24, 48, and 60 months post discharge. A contextual model was tested to investigate the mediating effects of participation on the predictive relationships of functional impairment, family satisfaction, and pain to QoL following traumatic SCI.

 

Outcome Measures:

12 months: Functional Independence Measure (FIM), Family Satisfaction Scale (FSS)

24 months: Presence of pain (yes/no) (at 24 months),

48 months: Craig Hospital Assessment and Reporting Technique (CHART), CHART Mobility subscale, CHART Social Integration subscale,

60 months: Life Satisfaction Index (LSI), self rated health status

  1. Greater functional impairment and pain were predictive of less participation, and participation significantly predicted both indicators of QoL.
  2. Greater functional ability increased the likelihood of greater mobility and activity in social pursuits and accompanying opportunities to socialize years later.
  3. Mobility and social integration mediated the relationship of functional impairment and pain to life satisfaction over time.
    Greater family satisfaction may facilitate social integration and in this process facilitate greater life satisfaction over time. But family satisfaction appears to have no effect on mobility, nor does it appear to promote a more optimal sense of personal health.

Lundstrom et al. 2013;

Sweden

Level 5 evidence

Cross-sectional
N=97

Population: N=97 (56.7 % M), mean age (y)= 43.5±12 (range 19-69); mean TSI (y)=7.3±5.6

Methodology: Participants were given a survey to explore and describe the leisure repertoire of people with tSCI and how the repertoire is related to interest, performance, and well-being. Age was divided into: group 1 (age 19-44); group 2 (age 45-69). TSI was divided into: group 1: 2-4 years; group 2: 5-8 years; group 3: 9-31 years.

Outcome Measures: Two-part postal survey that investigated sociodemographic variables and injury characteristics, and an interest checklist with 20 areas of leisure activites.

  1. The areas of leisure activities in which participants have reported the most changes were outdoor activities, exercise, and gardening. Religious activities and gambling were the leisure activities least reported for interest, performance, well-being, and changed performance.
  2. Participants who were 2–4 years post-injury were interested in and reported well-being from outdoor activities. They also reported the highest changes in performance of outdoor activities. In contrast, participants who were 9–31 years post-injury were interested in observing sports, performing ball sports, and bathing/boating.
  3. Older participants (age 45-69) were most likely to engage in social performance leisure activities and were least likely to engage in activities involving animals.
  4. Younger participants (age 19-44) were least likely to engage in ball sports and equipment sports for their own interest and well-being.

Krause & Bozard 2012;

USA

Prospective Longitudinal

N=64

Population: 64 participants with traumatic SCI (88% male, 12% female); mean (SD) age at follow-up in yrs: 61.5(7.2); mean (SD) YPI in yrs: 41.4(4.9).

Methodology: Participants were enrolled in 1973 from a specialty hospital in the Midwestern United States and assessed again approximately 35 years later. Data were collected by mailed survey.

Outcome Measures:  The Life Situation Questionnaire.

  1. Overall, social participation decreased over time, although the sitting tolerance and hours spent in gainful employment increased.
  2. Satisfaction with employment improved over time, whereas satisfaction with social life, sex life and health declined.
  3. Self-reported adjustment improved, but the prediction of future adjustment in 5 yrs declined.

Pershouse et al. 2012; Australia

Retrospective Longitudinal

N=270

Population: 270 persons with traumatic SCI (81% male); mean (SD) age in yrs: 43.3(11.4), range 20-76; mean (SD) age at injury in yrs: 27.3(9.7).

Methodology: Data were collected via telephone interviews and written questionnaires annually over 5 years, between 2004 and 2008, across 6 strata comprising participants grouped according to time since injury (<5y, 5–9y, 10–14y, 15–19y, 20–24y, ³25y).

Outcome Measures:  World Health Organization Quality of Life-8 (WHOQOL-8); Community Integration Measure (CIM)

  1. Quality of life remained relatively constant across the lifespan
  2. Participation, as measured by the CIM, showed a significant increase with time since injury, but not when adjusted for the American Spinal Injury Association Impairment Scale, income level, and living situation.

van Leeuwen et al. 2012;

Switzerland

Prospective longitudinal

N=206

Population: 206 persons with recently acquired SCI; Age: range 18-65 yrs

Methodology: measurements at the start of active rehabilitation, after 3 mos, at discharge, 1, 2, and 5 years after discharge.

Outcome Measures:  Mental Health Index (MHI-5)

  1. Levels of mental health increased between the start of active rehabilitation and 3 mos later, remained stable thereafter, and increased again between 2 and 5 years after discharge.
  2. Latent class growth mixture modeling revealed 5 mental health trajectories: (1) high scores (above 80) at all time-points (52%), (2) low scores (£60) at all time-points (4%), (3) early recovery from 40 to scores above 70 (13%), (4) intermediate scores from 60 to scores above 70 (29%), and (5) severe deterioration of scores above 70 to scores below 30 (2%).

DeVivo & Chen 2011;

USA

Longitudinal

N=1591

Population: 1591 individuals with paraplegia and tetraplegia, complete and incomplete; Mean age 39.5 yrs; Mean YPI 1.0.

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

Outcome Measures:  Satisfaction with Life Scale.

  1. Life satisfaction consistently increased over the 30 years of observation.

Kalpakjian et al. 2011;

USA

Longitudinal

N=6141

Population: 6141 individuals with paraplegia and tetraplegia, complete and incomplete; Mean age 39.0 yrs; 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.

Outcome Measures:  Satisfaction with Life Scale.

  1. Life satisfaction was shown to improve over time.
  2. Life satisfaction of those separated or divorced increased over time and did so to a greater degree for women.

Van Leeuwen et al. 2011;

The Netherlands

Longitudinal

N=206

Population: 206 subjects with SCI (153M 53F); Mean age 41.5 yrs, range 26.2-56.9.

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).

Outcome Measures:  Two study specific questions: 1) current life satisfaction; and 2) life satisfaction now vs prior to SCI.

  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.

Mitchell & Adkins 2010;

USA

Cohort

N SCI=26

N controls=38

Population: 26 individuals with SCI, mean(SD) age at baseline 50.3(11.2) yrs, mean(SD) YPI at baseline 25.2(14.2); YPI >5 yrs, no cognitive impairment. 38 age matched AB controls, mean(SD) age at baseline 50.4(11.5) yrs.

Methodology: Data collection at two time periods 5 years apart from 1999 – 2002, and 2004 -2007.

Outcome Measures:   Self-related health (SRH). Potential predictors of SRH included: aging, Self-report Activities of Daily Living (ADL) and independent activities of daily living (IADL); 4-point pain severity scale; Fatigue Severity Subscale from the Fatigue Assessment Instrument; The Older Adult Health and Mood Questionnaire.

  1. SCI subjects and control group declined significantly in SRH overtime.
  2. SRH ratings at follow-up significantly differed by group: decrease in excellent/very good category from 57.7% to 24.6% for the SCI group and decrease from 76.3% to 63.2% in control group.
  3. Aging has greater influence on SRH in people with SCI than on those without a SCI.
  4. Over time, the SCI group differed significantly from comparison group on all health measures: increase inhealth conditions, increase infatigue, decrease in ADLs and decrease in IADLs.

Mortenson et al. 2010;

Canada

Longitudinal

N=93

Population: 93 subjects with SCI (83M 10F); Mean age 39.6 yrs, range 18-78 yrs; Mean YPI >0.25 post discharge.

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

Outcome Measures:  Quality of Life Index.

  1. No QoL differences were observed between time points.
  2. Average QLI scores were 19.66 out of 30.

Savic et al. 2010;

Britain

Longitudinal

N=122

Population: 122 subjects with SCI (103M 19F);Mean age 48.0 yrs; Mean YPI 26.8.

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

Outcome Measures:  Life Satisfaction Index.

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

Barker et al. 2009;

Australia

Cross-sectional

N=270

Population: 270 individuals (220M 50F) with SCI(Tetraplegia = 107; Paraplegia = 100; Others=63); 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)-Brief.

  1. QoL was lower than the Australian norm.
  2. Overall, mean scores in each of the 4 domains (Physical health, Psychological health, Social Relationships, Environment) were lower for individuals with SCI.
  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.
  4. No differences were detected between people with SCI of different ages and times since injury.

Krause et al. 2009;

USA

Longitudinal

N=250

Population: 250 individuals (142M 108F) with SCI (Tetraplegia = 133; Paraplegia = 117); Mean age = 42.5 yrs; YPI = 14.0.

Methodology: Subjects studied at two points in time 6 years apart.

Outcome Measures:  Life Satisfaction Questionnaire.

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

Van Koppenhagen et al. 2009;

The Netherlands

Longitudinal

N=222

Population: 222 individuals with SCI (Tetraplegia complete= 54, Paraplegia complete= 96, Other = 38); Mean age (range) = 41.5 yrs (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 and 1 yr post discharge).

Outcome Measures:  Two study specific questions: 1) current life satisfaction; and 2) life satisfaction now vs. prior to SCI.

  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.

Krause & Coker 2006;

USA

Longitudinal

N initial=256

N final=78

Population: 78 respondents with SCI, mean(SD) age 55.7(7.6) yrs and mean(SD) YPI 35.8(4.7) at follow-up; mean(SD) age at enrollment 35.1(13.9) yrs and mean(SD) YPI 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, an increase was seen in sitting tolerance, educational and employment outcomes, satisfaction with employment, and adjustment.
  2. During the last 15 years, sitting tolerance decreased, the number of physician visits increased, and satisfaction with social life and sex life decreased.

Bushnik & Charlifue 2005; USA

Longitudinal

N=63

Population: 63 individuals, C1-C4, sustained at a mean(SD) age of 24.2(2.2) yrs; Mean(SD) age (yrs): phase 1 = 29.7(8.1), phase 2 = 37.4(8.4), phase 3 = 43.2(8.4); Mean(SD) YPI: phase 1 = 5.3(2.4), phase 2 = 13.1(2.5), 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 & Broderick 2005;

USA

Longitudinal

N initial=161

N final=95

Population: 95 individuals with SCI, mean(SD) age 53.8(9.2) yrs and mean(SD) YPI 32.2(5.6) at follow-up.

Methodology: Subjects assessed twice over a period of 25 years (1974 and 1998).

Outcome Measures:  Life Satisfaction Questionnaire (LSQ).

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

Charlifue & Gerhart 2004a;

USA

Longitudinal

N=178

Population: 178 individuals with SCI, age 43-83 yrs, YPI 29-55 at final phase of study.

Methodology: Subjects evaluated at 3 yr 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 decreased over time – a significant relationship between perceived life satisfaction and community integration was revealed.

Charlifue & Gerhart 2004b;

USA

Longitudinal

N=189

Population: 189 subjects with SCI; age (range) 43-83 yrs and YPI 29-55 at final phase of study.

Methodology: Subjects evaluated at 3 yr 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 yrs later at all three data points.
  2. Previous scores on perceived quality of life were correlated with perceived well-being 3 yrs later at all three data points.
  3. Being male, older, longer injured, and having functionally complete tetraplegia were related to worse outcomes.

Bushnik 2002;

USA

Longitudinal

N=58

Population: 58 individuals with complete high tetraplegia (C1-C4); Mean(SD) age (yrs): phase 1 = 29.5(8.4), phase 2 = 37.3(8.7), phase 3 = 43.0(8.7); Mean(SD) YPI: phase 1 = 4.8(2.2), phase 2 = 12.7(2.4), phase 3 = 18.5(2.4).

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.
  2. 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 decreased from Phase 1 to Phase 2.
  4. Older individuals spent fewer hours per day out of bed and fewer days per week out of the house than younger participants in Phase 1.  In Phase 3, older individuals participated in fewer leisure activities at home than younger participants.
  5. Income increased over time for the sample.

Putzke et al. 2002b;

USA

Longitudinal

N=270

Population: 270 subjects with SCI.

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.

Charlifue et al. 1999;

USA

Longitudinal

N enrolled=439

N final=315

Population: 315 individuals with SCI, mean(SD) age 37.1(0.6) yrs, mean(SD) YPI 9.3(0.2).

Methodology: Subjects studied initially at their 5th, 10th, and 15th anniversaries post-injury and subsequently 5 yrs 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 (indicating an increase 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.

Kemp & Krause 1999;

USA

Cross-sectional

N SCI=177

N controls=62

Population: 177 subjects with SCI; mean age at onset 25.5 yrs; mean age at enrollment 40.1 yrs. 62 healthy subjects; mean age at enrollment 63.7 yrs.

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.

Charlifue et al. 1998;

USA

Longitudinal

N=227

Population: 227 individuals with SCI, YPI at enrollment >20, age (range) at injury 15-55 yrs, mean age 54.9 yrs and mean YPI 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 decreased over time. These were statistically significant only for the older age groups, those injured less than 30 yrs or more than 40 yrs, and those with complete paraplegia.
  2. Those who scored high on the LSI-Z experienced higher social integration 3 yrs 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 yrs later, while those who reported fatigue previously were more than 5 times more likely to still feel fatigue 3 yrs later.

Krause 1998;

USA

Longitudinal

N=114

Population: 114 individuals (95M 19F) with SCI(Tetraplegia = 67, Paraplegia = 47); Mean age = 29.9 yrs; Mean YPI = 8.7.

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

Outcome Measures:  Life Situation Questionnaire (LSQ).

  1. Satisfaction with employment increased over 20 yrs.
  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.).

Krause 1997;

USA

Longitudinal

N initial=347

N final=235

Population: 235 subjects with SCI, mean(SD) age at injury 23.1(9.1) yrs, mean(SD) age and YPI at last data collection point: 46.7(10.7) yrs and 23.6(7.4).

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 wellbeing diminished.
  2. Participants were less satisfied with their lives, reported more problems with dependency, and were more pessimistic when predicting their future adjustment.
  3. Increase in non-routine doctor visits but decrease in the number of hospitalizations, reflecting both actual health and changes in health care practices.

Stensman 1994;

Sweden

Longitudinal

N=17

Population: 17 subjects with SCI (15M 2F); Mean age = 32.4 yrs; Mean YPI = 0.5.

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

Outcome Measures:  Single item to measure perceived QoL.

  1. 5 subjects had consistently high QoL.
  2. 6 had low QoL between 0.5 and 3 yrs, 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

Longitudinal

N=135

Population: 135 individuals (110M 25F) with SCI(Tetraplegia = 91; Paraplegia = 44); Mean age = 30.6 yrs; Mean YPI = 9.2.

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

Outcome Measures:  Life Situation Questionnaire (LSQ).

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

Crewe & Krause 1990;

USA

Longitudinal

N=154

Population: 154 individuals (124M 30F) with SCI(Tetraplegia = 95; Paraplegia = 58); Mean age = 32.0; YPI = 10.0.

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

Outcome Measures:  Life Situation Questionnaire.

  1. Satisfaction with employment increased over 11 yrs.
  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.).
top