Quality of Life and Community Reintegration
In the general population, advancing into older adulthood is a period when individuals are faced with a unique array of physical, functional, and environmental stressors. This is no different for individuals aging with a traumatic SCI, who are now living an average of 30 to 40 years post-injury (YPI) (Samsa et al. 1993). As more individuals with SCI survive into their second, third, and even later decades, living with a disability becomes a life-long process for persons with SCI (Hallin et al. 2000).
Given the evidence in the previous sections of this chapter indicating that SCI represents a model for premature aging in some body systems (e.g. cardiovascular and endocrine, musculoskeletal, immune, and respiratory systems), the physical and functional declines associated with natural aging are likely to present more quickly among individuals with SCI. Such knowledge of these effects of aging however is insufficient for rehabilitation purposes without any indication of how individuals perceive the aging-related changes and how they adapt their lifestyles in response to such changes (Charlifue et al. 2010).
A key goal of rehabilitation is to enable successful community reintegration and high QoL. QoL describes the well-being and life satisfaction of an individual, and is a multi-factorial construct, which includes but is not limited to self-assessments of interpersonal relationships and social support, physical and mental health, environmental comfort, and a host of psycho-social factors (Kaplan & Erickson 2000). Community reintegration is an important construct shown to be predictive of life satisfaction in persons with SCI (e.g. Pierce et al. 1999; Richards et al. 1999; Putzke et al. 2002b; Tonack et al. 2008; Kemp & Bateham 2010). Community reintegration has been defined as returning to family and community life, engaging in normal roles and responsibilities, and actively contributing to one’s social groups and to society as a whole (Dijkers 1998). Thus successful reintegration involves resuming occupations or activities deemed important to the individual and society (i.e. self-care, employment, leisure, etc.; Yasui & Berven 2009). Environmental factors (e.g. social, institutional, cultural or physical) can either create barriers or facilitate reintegration, which impacts QoL (Anderson 2004).
In the general population, older adults frequently experience physical declines (Branch & Jette 1983) that may limit their activities of daily living (e.g., Hoyer et al. 1999), and negatively impact community reintegration and QoL. Similarly, both physical and mental health factors influence QoL in persons with SCI. For instance, poor physical health, secondary health conditions (e.g. pressure ulcers, pain, etc.), depression and stress have all been shown to negatively affect QoL (Craven et al. 2012).
With regards to aging, however, there are some mixed findings in relation to community reintegration and QoL, even within the same studies. Some studies reports that life satisfaction, QoL and community reintegration (at least in some domains) improve with years post-SCI (e.g. Zarb et al. 1990; Pentland et al. 1995; Westgren & Levi 1998; Dijkers 1999; Tonack et al. 2008), whereas other studies indicate older age is associated with poorer community reintegration and QoL (e.g. Crewe & Krause 1990; Eisenberg & Saltz 1991; Whiteneck et al. 1992; Tonack et al. 2008). The discrepancies with aging and QoL tend to be more evident in cross-sectional analyses whereas longitudinal studies “mostly show relatively high and stable levels of QoL over long periods of time” (Kemp & Ettelson 2001, p. 119; Savic et al. 2010). An additional point to consider is that these differences may arise due to the use of different instruments, which may not all assess the same underlying QoL construct.
In this section, one systematic review, twenty-five longitudinal studies and two cross-sectional studies on community reintegration and QoL after SCI are reviewed.
Author Year; Country Date included in the review Total Sample Size Level of Evidence Type of study Score |
Methods | Outcome |
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Sakakibara et al. 2012; Canada |
Methods: Electronic databases were searched for peer-reviewed published studies reporting on age-related QoL changes over time in adults with traumatic SCI; data from relevant studies were transcribed into data extraction forms and analyzed by years post injury (YPI) and chronologic age. No interventions studied. Outcome measures: Include various QoL measures e.g., Satisfaction with Life Scale (SWLS), Quality of Life Index (QLI), Life Satisfaction Questionnaire (LSQ). Databases: MEDLINE/PubMed, CINAHL, EMBASE and PsycINFO. |
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Author Year; Country Score Research Design Total Sample Size |
Methods | Outcome |
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Celik et al. 2017; Turkey Level 2 evidence Longitudinal N=40 |
Population: 20 people with SCI in Group 1 (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 20 people with SCI in Group 2 (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) |
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Jorgensen et al. 2017; Sweden Level 5 Cross-sectional N=119 |
Population: 84 males and 35 females with SCI; 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 ≥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, and (bowel-related and bladder related problems, spasticity and pain) |
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Krause et al. 2016; USA Level 2 Longitudinal N=49 |
Population: 49 persons with SCI (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. Participants were identified from outpatient records of a Midwestern USA university hospital in 1973. Methodology: Follow-ups were conducted in 1984 and at 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 |
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Lofvenmark et al. 2016; Sweden |
Population: 27 participants with SCI attended yearly controls (YC) (67% M): mean age (y)=33±13; AIS A-C (78%), AIS D (22%); tetraplegia (44%), paraplegia (56%); Wheelchair user (81%), ambulatory (19%) 11 people with SCI did not attend the YC (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. |
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Lundstrom et al. 2016; Sweden Level 5 Cross-sectional N=73 |
Population: 73 individuals with SCI (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%); 20-35 YPI (n=33); 36-55 YPI (n=40) Methodology: Surveys were conducted by phone to collect information about the relationship between participation in activities and secondary health complications (SHCs) among persons aging with traumatic SCI. Outcome Measures: 10 activities from the PARTS/M-v3 (PARTicipation Survey/Mobility version-3), medical records |
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Newman et al. 2016; USA Level 5 Cross-sectional N=768 |
Population: 768 people with SCI (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 collected from the SCI Longitudinal Aging Study 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 |
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Pretz et al. 2016; USA Level 2 Longitudinal N=4846 |
Population: 4846 participants with SCI (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.. 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). |
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Cao et al. 2015; USA Level 2 Longitudinal N=1032 |
Population: 1032 people with SCI (68.9% M);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 examine the relationship between marital status and SWB over time for people with chronic SCI. Outcome Measures: Life Situation Questionnaire-Revised (LSQ-R) |
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Cao et al. 2015; USA Level 2 Longitudinal N=1635 |
Population: 1635 people with SCI (74% M): Baselineà age at injury (years)= 32.98±13.83; YPI= 12.79±9.61; Nonambulatory cervical (34.8%), nonambulatory noncervical (33.95%), ambulatory (31.25%) Participants were recruited from a Southeastern United States hospital. Methodology: 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”). |
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January et al. 2015; USA Level 2 Longitudinal N=177 |
Population: 177 participants with SCI (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%) Adults who sustained a SCI before 19 years of age were recruited from the Shriners Hospitals for Children SCI database. Methodology: Annual interviews were completed by participants between 2010-2014 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: 12-item Short-Form Health Survey Version 2 (SF-12v2), Beck Anxiety Inventory (BAI), Patient Health Questionnaire (PHQ-9), Satisfaction With Life Scale (SWLS) |
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Marcel et al. 2015; The Netherlands Level 5 Cross-sectional N=128 |
Population: 48 participants (64.6% M) sustaining an SCI at <50 years of age: 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%); 79 participants (63.3% M) sustaining an SCI at ≥50 years of age: 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. 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). |
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Silverman et al. 2015; USA Level 2 Longitudinal Ntotal=1594 |
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, t3, 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) |
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Cao et al. 2014; USA Level 2 Prospective Cohort N=863 |
Population: 863 people with SCI (72% M, 28% F) recruited from a rehabilitation hospital in Southeastern United States; Mean age (years): 38.86±11.82; Mean years post injury: 9.4 ±6.31; Ambulatory 22.75%, non-ambulatory: 77.25% Methodology: 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) |
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Cao et al. 2014; USA Level 2 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; Methodology: 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), including life problems/environmental barriers subscales, annual household income (less than $10K, $10K-$25K, $25K and more) |
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Hernandez et al. 2014; USA Level 2 Longitudinal N=662 |
Population: 144 participants in the SCI group: mean age (y) = 37.33±15.02; 260 participants in the burns group: mean age (y) = 39.97±16.97; 260 participants in the IAF (interarticular fractures) group: mean age (y) = 44.33±17.83 Participants were a subset of a larger longitudinal study conducted by the Injury Control Research Center at the University of Alabama. Methodology: 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 IAF. Data was collected through interviews. Outcome Measures: Functional Independence Measure (FIM), Family Satisfaction Scale (FSS), Life Satisfaction Index (LSI), marital status |
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Erosa et al. 2014; USA |
Population: 144 people with SCI (108 M, 36 F); Mean age (y)=37; 35.4% single, 45.1% married, 11.1% divorced, 4.2% separated, 4.2% ‘other/unknown’; Methodology: A trained interviewer collected data from individuals 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) 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 |
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Krause & Bozard 2012; USA |
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. |
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Pershouse et al. 2012; Australia |
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) |
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van Leeuwen et al. 2012; Switzerland |
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) |
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DeVivo & Chen 2011; USA |
Population: 1591 individuals with paraplegia and tetraplegia, complete and incomplete; Mean age 39.5 yrs; Mean YPI 1.0. Methodology: Participants studied at seven time points at 1, 5, 10, 15, 20, 25, and 30 YPI. Outcome Measures: Satisfaction with Life Scale. |
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Kalpakjian et al. 2011; USA |
Population: 6141 individuals with paraplegia and tetraplegia, complete and incomplete; Mean age 39.0 yrs; Mean YPI 1.0; Male = 4864. Methodology: Participants studied at 1 to >5 time points at 1 and 5 YPI, and every 5 years after. Outcome Measures: Satisfaction with Life Scale. |
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Van Leeuwen et al. 2011; The Netherlands |
Population: 206 participants with SCI (153M 53F); Mean age 41.5 yrs, range 26.2-56.9. Methodology: Participants 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. |
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Mitchell & Adkins 2010; USA |
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: Potential predictors of Self-related health (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; and the Older Adult Health and Mood Questionnaire. |
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Mortenson et al. 2010; Canada |
Population: 93 participants with SCI (83M 10F); Mean age 39.6 yrs, range 18-78 yrs; Mean YPI >0.25 post discharge. Methodology: Participants studied at two time points between 1999 and 2003 (3 months and 15 months post discharge). Outcome Measures: Quality of Life Index. |
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Savic et al. 2010; Britain |
Population: 122 participants with SCI (103M 19F); Mean age 48.0 yrs; Mean YPI 26.8. Methodology: Participants studied at six points in time (1990; 1993; 1996; 1999; 2002; and 2006). Outcome Measures: Life Satisfaction Index. |
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Krause et al. 2009; USA |
Population: 250 individuals (142M 108F) with SCI (Tetraplegia = 133; Paraplegia = 117); Mean age = 42.5 yrs; YPI = 14.0. Methodology: Participants studied at two points in time 6 years apart. Outcome Measures: Life Satisfaction Questionnaire. |
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Van Koppenhagen et al. 2009; The Netherlands |
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: Participants 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. |
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Krause & Coker 2006; USA |
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: Participants assessed 3 times over a 30-year period (1973, 1988, 2002). Outcome Measures: Life Situation Questionnaire (LSQ). |
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Bushnik & Charlifue 2005; USA |
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: Participants 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. |
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Krause & Broderick 2005; USA |
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: Participants assessed twice over a period of 25 years (1974 and 1998). Outcome Measures: Life Satisfaction Questionnaire (LSQ). |
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Charlifue & Gerhart 2004a; USA |
Population: 178 individuals with SCI, age 43-83 yrs, YPI 29-55 at final phase of study. Methodology: Participants 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). |
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Charlifue & Gerhart 2004b; USA |
Population: 189 participants with SCI; age (range) 43-83 yrs and YPI 29-55 at final phase of study. Methodology: Participants 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. |
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Bushnik 2002; USA |
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: Participants 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). |
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Putzke et al. 2002b; USA |
Population: 270 participants with SCI. Methodology: Participants studied at 1 and 2 years post-injury. Outcome Measures: Satisfaction with Life Scale (SWLS), Craig Handicap Assessment Reporting Technique (CHART), Short-Form 12 (SF-12). |
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Charlifue et al. 1998; USA |
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: Participants 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. |
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Krause 1998; USA |
Population: 114 individuals (95M 19F) with SCI (Tetraplegia = 67, Paraplegia = 47); Mean age = 29.9 yrs; Mean YPI = 8.7. Methodology: Participants studied at four points in time (1974; 1985; 1989; 1994). Outcome Measures: Life Situation Questionnaire (LSQ). |
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Krause 1997; USA |
Population: 235 participants 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: Participants assessed twice over a 9-year period (1985, 1994). Outcome Measures: Life Situation Questionnaire (LSQ). |
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Stensman 1994; Sweden |
Population: 17 participants with SCI (15M 2F); Mean age = 32.4 yrs; Mean YPI = 0.5. Methodology: Participants studied at six time points at 0.5, 1, 2, 3, 4, 5 YPI. Outcome Measures: Single item to measure perceived QoL. |
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Krause 1992; USA |
Population: 135 individuals (110M 25F) with SCI (Tetraplegia = 91; Paraplegia = 44); Mean age = 30.6 yrs; Mean YPI = 9.2. Methodology: Participants studied at two points in time (1974; 1989). Outcome Measures: Life Situation Questionnaire (LSQ). |
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Crewe & Krause 1990; USA |
Population: 154 individuals (124M 30F) with SCI (Tetraplegia = 95; Paraplegia = 58); Mean age = 32.0; YPI = 10.0. Methodology: Participants studied at two points in time points (1974; 1985). Outcome Measures: Life Situation Questionnaire. |
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Lundstrom et al. 2013; Sweden Level 5 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. 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. Methodology: Participants were given a survey to explore and describe the leisure activities of people with tSCI and their relationship to interest, performance, and well-being. Outcome Measures: Two-part postal survey that investigated sociodemographic variables and injury characteristics, and an interest checklist with 20 areas of leisure activites. |
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Kemp & Krause 1999; USA |
Population: 177 participants with SCI; mean age at onset 25.5 yrs; mean age at enrollment 40.1 yrs. 62 healthy participants; 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. |
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Barker et al. 2009; Australia |
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. |
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Discussion
Aging is a complex process that does not only encompass biology. Environmental factors also change over time, which may be particularly important to persons with SCI, because they not only face physical limitations associated with their SCI, but also injury-related social and economic changes (Krause & Coker 2006). For example, in a series of papers reporting on the same cohort at different time points over a period of 30 years, there were significant improvements with satisfaction with employment and finances over time (Crewe & Krause 1990; Krause 1992; Krause 1998; Krause & Broderick 2005; Krause & Coker 2006), whereas satisfaction with both social and sexual relationships decreased (Krause 1997; Krause & Broderick 2005; Krause & Coker 2006). Similarly, Bushnik & Charlifue (2005) observed changes related to economics and technology, but not related to SCI or aging per se. For example, letter writing, which probably included emails, increased in the sample over time because home computing had likely become more common. Although not significant, the high percentage of persons who switched to a portable ventilator or pneumobelt from a fixed ventilator may have improved community reintegration for these individuals. As well, the finding that economic self-sufficiency steadily improved with time (e.g. Charlifue & Gerhart 2004a; Krause & Broderick 2005; Krause & Coker 2006) supports Bushnik’s (2002) speculation that increased economic standing may improve community reintegration. In the case of Bushnik’s (2002) sample, improved financial status enabled better access to adaptive equipment (e.g. modified vans).
Conversely, level of community reintegration for Charlifue & Gerhart’s (2004a) sample did not significantly change over time, but this may have been due to sample differences between the studies and that the time between data collection intervals in the other studies reviewed were further apart. As well, the individuals in Charlifue and Gerhart’s (2004a) study were at least 20 years post-injury when they entered the study. At 20 years post-injury, it is likely that routines and strategies for community participation have been well-established, and are not likely to dramatically change over 3 year periods. However, an understanding of environmental factors is important for assessing QoL since there is evidence that an individual’s adjustment over time is influenced by corresponding environmental changes (Krause & Sternberg 1997).
With regards to change in activity patterns, Bushnik and Charlifue (2005) attributed the changes to the natural progression of time utilization from external social activities associated with youth (e.g. card games with friends) to other activities (e.g. spending time with family). Further, the reported declines in activity by the SCI cohorts as they aged (e.g., Bushnik 2002, Charlifue and Gerhart 2004a, and Krause & Broderick 2005) might be similar to declines in activity patterns in the general population (Christensen et al. 1996; Bukov et al. 2002).
One of the main strengths of the studies by Krause (1997), Krause and Broderick (2005), and Krause and Coker (2006) is they assessed whether there were any differences between their current sample and those who were lost to follow-up. Based on these analyses, clear survivor effects emerged in both studies as the characteristics of respondents (persons who participated in both data collection periods) at Time 1 were younger, younger at age of SCI-onset, were less years post-injury, had higher levels of education, more likely to have cervical injuries, greater sitting tolerance, and had more social outings than non-respondents (persons who only participated in the first data collection period). These findings highlight that some care should be taken when interpreting the findings from these studies as it may only reflect survivors, and those who continued to participate.
The findings appear to provide some mixed evidence regarding the stability of QoL/life satisfaction over time. In some cases QoL/life satisfaction remained stable (i.e., Charlifue et al. 1998; Charlifue et al. 1999; Charlifue & Gerhart 2004b; Savic et al. 2010; Pershouse et al. 2012), or decreased over time (i.e., Krause 1997; Charlifue et al. 1998). Similarly, Mitchell & Adkins 2010 that aging has greater negative influence on self-rated health in people with SCI than on those without a SCI over time. In other studies QOL/ life satisfaction improved with over (Stensman 1994; Kemp & Krause 1999; Bushnik 2002; Putzke et al. 2002b; Bushnik & Charlifue 2005; Krause & Coker 2006; van Koppenhagen et al. 2009; DeVivo & Chen 2011; Kalpakjian et al. 2011; van Leeuwen et al. 2011). Likewise, mental health has also been reported to improve longitudinally (van Leeuwen et al. 2012).
The discrepancies in these studies may potentially be attributed to theoretical and methodological differences. For instance, the study by Charlifue et al. (1998) was the only study that explicitly provided a theoretical model for assessing life satisfaction. Specifically, Charlifue and colleagues (1998) framed aging with SCI within a global thesis of function, which took into account physical, psychological, and environmental factors. Several studies with lower levels of evidence predicting life satisfaction have used other models that incorporate a variety of domains thought to impact on QoL (i.e., Pierce et al. 1999; Richards et al. 1999; Tonack et al. 2008). Unfortunately, Charlifue et al. (1998) did not provide a clear rationale for including specific predictor variables in their models. A larger theoretical concern is the issue of response shift (also known as recalibration, reprioritization, and reconceptualization; Schwartz & Spangers 2000), which refers to a dynamic process where an individual undergoes simultaneous changes in their internal standards, values, and conceptualizations of QoL in response to health and physical functioning changes (Tate et al. 2002). Ambiguous or paradoxical findings can occur because of differences among people or changes within people regarding internal standards, values, or conceptualization of health-related QoL (Schwartz et al. 2007). As a result, the psychometric properties (e.g., validity and reliability) of measurement tools can be affected (Schwartz et al. 2007).
In terms of methodological differences, because the samples in each of the studies had different mean ages and YPI it is not surprising that there are discrepancies in reported QoL. However, when examining the QoL results by an aging parameter, YPI for example, a common finding was that regardless of age, individuals with relatively new SCI (i.e.≤5 YPI) are more likely to experience improvements to their QoL (Stensman 1994; Kemp & Krause 1999; Bushnik 2002; Putzke et al. 2002b; Bushnik & Charlifue 2005; Krause & Coker 2006; van Koppenhagen et al. 2009; DeVivo & Chen 2011; Kalpakjian et al. 2011; van Leeuwen et al. 2011) than individuals with longer term SCI (i.e., ≥6 YPI) who consistently report high and stable QoL levels (i.e., Charlifue et al. 1998; Charlifue et al. 1999; Charlifue & Gerhart 2004b; Savic et al. 2010). That is, after sustaining a traumatic SCI, the QoL of these individuals may be low and have more room to improve than those individuals with longer term SCI. In fact, Dijkers (2005) noted that the wellbeing after SCI reaches a plateau at the end of the adjustment period, which is estimated to last from two to five years (Dijkers 2005). Similarly, Whalley-Hammell (2007) reported that after a four year adjustment period, individuals with SCI feel as though as they live a normal life, and have the same problems as everyone else (Whalley-Hammell 2007). In this review, there one study however that observed no changes in QoL among individuals with ≤5 YPI (Mortenson et al. 2010). Mortenson et al. (2010) argued that the individuals may have already adjusted and experienced a response shift prior to the baseline assessment.
Although age of SCI onset does not appear to limit the potential high QoL, there are likely age-related factors that may potentially influence QoL. For example, in studies with samples with mean ages in the 20s, individuals were found to have greater improvements in life satisfaction and QoL if they were students, lived independently, had a lower level injury, had overcome past medical problems, and if they had accessible vans for transportation (Barker et al. 2009; Sakakibara et al. 2012). Among individuals in their 30s, both Putzke et al. (2002b) and Stensman (1994) found QoL to be influenced by amount of pain and interference with pain (Putzke et al. 2002b; Stensman 1994),and Kalpakjian et al. (2011) found the relationship between life satisfaction and YPI to vary depending on marital status and gender (Kalpakjian et al. 2011).
Furthermore, the nature of the control group can lead to different interpretations of the results. A strength of Kemp and Krause’s (1999) was the use of an able-bodied, and a control group with disability (i.e., polio) when examining issues of QoL after SCI as it provides some context to the extent of some problems for persons post-SCI (i.e. levels of depression). However, the characteristics of the control groups were significantly different to the group with SCI on some key factors. For instance, the able-bodied and polio groups were significantly older (p< 0.01) and had higher levels of education than the group with SCI (p< 0.05). As well, the polio group was comprised mostly of females, had a mean pediatric age of onset, was 50.9 years post-polio, and 90% were Caucasian, whereas the SCI group was comprised of mostly males from culturally diverse backgrounds, and who had an adult age of onset, and were only 14.5 years post-injury. This limitation was addressed in the study, but highlights that the findings should be interpreted with caution since many socio-demographic and historical factors may have influenced levels of depression and life satisfaction. Nonetheless, the finding that persons with SCI have lower QoL compared to the able-bodied population is consistent with other studies that did not meet the SCIRE inclusion criteria (Kemp & Ettelson 2001).
Finally, although a couple of studies reported declines in QoL over time (Krause 1997; Charlifue et al. 1998), subsequent papers focusing on the same cohorts at longer lengths of follow-up reported different results. For example, Charlifue et al. (1998) first reported that after 3 years of observation 76% of the sample consistently rated their overall QoL as either good or excellent, but that there were significant decreases in life satisfaction, as measured by the life satisfaction index (LSI), among older individuals, those with <30 YPI and >40 YPI, and those with complete paraplegia (Charlifue et al. 1998). At a follow up thirteen years later, Savic et al. (2010) similarly reported that 76% of the sample consistently reported overall QoL as good or excellent, with the highest life satisfaction reported at the last time point (Savic et al. 2010). Similarly, over two time points 9 years apart, Krause (1997) reported diminished satisfaction related to social and sex lives, as measured by the life situation questionnaire (LSQ)* (Krause 1997). Lower satisfaction is corroborated in papers by Krause and Broderick (2005) and Krause and Coker (2006) which used observations from the same cohort at different lengths of follow-up (Krause & Broderick 2005; Krause & Coker 2006). However, these two papers in addition to Crewe and Krause (1990), Krause (1992), and Krause (1998), all reported significant increases in satisfaction related to employment among the same cohort over various lengths of time (Crewe & Krause 1990; Krause 1992; Krause 1998). In general, the overall and common finding from studies that followed the same cohorts over time is that global QoL tends to remain high and stable over time but when considering specific areas of QoL, fluctuations exist with some domains increasing in importance (e.g. employment) and other decreasing (e.g. social and sex lives) (Krause & Bozard 2012).
*Note: Krause 1997 used a modified version of the LSQ. Using this version, the authors also observed significant declines in satisfaction related to family relationships, emotional adjustment and control over life.
Conclusion
There is level 2 evidence from one cohort study (Mitchell & Adkins 2010) that aging has greater influence on self-rated health in people with SCI than on those without a SCI.
There is Level 4 evidence from four longitudinal studies (Bushnik 2002; Bushnik & Charlifue 2005; Krause & Broderick 2005; Krause & Coker 2006) that changes in environmental factors over time (i.e., economics, technology) may influence QoL in persons with SCI rather than the aging process per se.
There is Level 4 evidence from three longitudinal studies (Charlifue & Gerhart 2004a; Bushnik & Charlifue 2005; Krause & Bozard 2012) that community reintegration and social participation declines with age after SCI. However, these changes in community reintegration may be similar as compared to the aging general population.
There is Level 4 evidence from seven longitudinal studies (Crewe & Krause 1990; Krause 1992; Krause 1997; Krause 1998; Krause & Broderick 2005; Krause & Coker 2006; Krause & Bozard 2012) that selected domains of life satisfaction change (i.e., social life, sex life, and health decrease, and employment, finances, and adjustment increase) as one ages with an SCI. It may be that these changes in satisfaction of certain domains are comparable to changes in the general population.
There is Level 5 evidence from one cross-sectional study (Kemp & Krause 1999) that age of SCI-onset may be an influential factor on life satisfaction.
There is Level 4 evidence from one longitudinal study (Charlifue & Gerhart 2004b) that previous perceptions of life satisfaction are predictive of later perceptions of life satisfaction.
There is Level 5 evidence from two cross-sectional studies (Kemp & Krause 1999; Barker et al. 2009) that life satisfaction is lower for persons with SCI compared to the general population.
There is Level 4 evidence from two longitudinal studies (Stensman 1994; Putzke et al. 2002a) that previous reports of pain interference after SCI, irrespective of age, are predictive of later pain interference.
There is level 4 evidence from 10 longitudinal studies that individuals with ≤5 YPI have the potential to improve their QoL (Stensman 1994; Kemp & Krause 1999; Bushnik 2002; Putzke et al. 2002b; Bushnik & Charlifue 2005; Krause & Coker 2006; van Koppenhagen et al. 2009; DeVivo & Chen 2011; Kalpakjian et al. 2011; van Leeuwen et al. 2011).
There is level 4 evidence from 4 longitudinal studies that individuals with longer term SCI (i.e., ≥6 YPI) consistently report high and stable QoL levels (Charlifue et al. 1998; Charlifue & Gerhart 2004b; Savic et al. 2010). Similarly, there is Level 4 evidence from one longitudinal study (Pershouse et al. 2012) that QoL remains stable across the lifespan even in those with long-duration SCI.