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Pediatric-Onset Rehabilitation

Psychosocial Function

The onset of an SCI in infancy, childhood, or adolescence is a life-altering event that has major psychosocial implications for survivors. Depression is the most common health condition in individuals with SCI. In the adult SCI population, it is estimated that 22% of individuals are living with depression (Williams & Murray 2015). In addition, during inpatient rehabilitation, as many as 42% of individuals with SCI experience depression (Krause et al. 2000). Often closely linked to depression, anxiety is also prevalent among individuals with SCI. According to a meta-analysis by Le and Dorstyn (2016), approximately 27% of adults with SCI experience clinically significant symptoms of anxiety. Previous research has found that health complications (e.g., pain), financial strain, and unsafe use of alcohol are associated with heightened risks of depression and/or anxiety in individuals with SCI (Budh et al. 2005; Hoffman et al. 2011; Zürcher et al. 2019), whereas factors such as social support, resilience, and community participation serve as protective factors against depression and/or anxiety (Kraft & Dorstyn 2015; Min et al. 2014; Müller et al. 2015). In terms of interventions various psychological (e.g., cognitive behavioral therapy) and physical interventions (e.g., physical activity courses) have demonstrated effectiveness in treating depression and anxiety in those with SCI (Burke et al. 2019; Craig et al. 1998; Curtis et al. 2017).

In individuals with and without SCI, levels of depression and anxiety are key determents of life satisfaction, as well as the physical, emotional, and social domains of QoL (Garma et al. 2011; Van Leeuwen et al. 2012). Compared to their counterpart without disabilities, individuals with SCI tend to have lower QoL and decreased life satisfaction (Dijkers 2005; Evans et al. 1994). As suggested by Evans et al. (1994), those with more severe injuries are at particularly high risk of having compromised QoL and life satisfaction. The onset of an SCI may also impact the mental and social aspects of life caregivers, especially parents of children with SCI, as the presence of a disability may contradict the “normal” life that they envisioned for their child (Lynch & Cahalan 2017). However, the adverse psychological impact of SCI may be buffered by adaptive coping strategies (Chevalier et al. 2009). Coping can be defined as “cognitive and behavioral efforts to manage external and/or internal demands that exceed the resources of the individual” (Kelly, Mulcahey et al. 2012). In a study by King and Kennedy (1999), the findings demonstrate that group-based interventions aiming to enhance adaptive coping in individuals with SCI may help reduce depression and anxiety.

Research tackling the psychosocial aspect of SCI has primarily focused on the adult population. It is not until recently that the psychosocial aspect of SCI in the pediatric population received growing interest from practitioners and researchers. Given the dynamic nature of childhood and adolescence, the psychosocial consequences of SCI may have profound developmental implications for the pediatric-SCI population. The purpose of this section is to summarize and review the current evidence related to depression, anxiety, coping, QoL, and life satisfaction in the pediatric SCI population.

Author, Year

Country

Study Design

Sample Size

Population

Intervention

Outcome Measure

Results

(Duzgun Celik et al., 2018)

Turkey

Observational

N=40

Population: Pediatric-sustained SCI (<18 yr): Age at interview: 23.9±5.8 (18-44) yr; Age at injury: 14.6±2.8 yr; Time since injury: 9.4±6.1 (3-29) yr; Gender: males=13, females=7; Severity of injury: AIS A=10, AIS B=3, AIS C=3, AIS D=4. Adult-sustained SCI (18+ yr): Age at interview: 43.9±12.8 (30-79) yr; Age at injury: 33.1±16.6 yr; Time since injury: 8.7±8.0 (1-31) yr; Gender: males=10, females=10; Severity of injury: AIS A=12, AIS B=1, AIS C=5, AIS D=2.

Intervention: None. Survey.

Outcome Measures: Craig Handicap Assessment and Reporting Technique (CHART-sf), World

Health Organization Quality of Life Scale Short Form (WHOQOL-Bref; four domains including physical, mental, social, and environmental), Beck Depression Inventory (BDI).

1.         There was no significant difference in the mean and total CHART-sf scores between the two groups; total CHART-sf scores were not correlated with ASIA scores, complete/incomplete status of patients, depression level or disease duration in either group.

2.        For WHOQOL-Bref, only environmental area scores were significantly higher in Group 2 than Group 1 (p<0.05).

3.        There was no difference in BDI scores between the two groups, and 79% of patients in both groups were within a normal range.

 

(Morrison et al., 2017)

USA

Observational

N=178 Caregivers of children with SCI

Population: Group 1 (Caregivers with children 1-18 yr; n=178): Child age at injury: 5.8±5.6 yr; Child age at interview: 11.1±5.2 yr; Child gender: males=100, females=78; Level of injury: paraplegia=121, tetraplegia=57; Severity of injury: AIS A=87, AIS BCD=91. Group 2 (just the children 7-18 yr from the above sample; n=134): Child age at injury: 7.3±5.7 yr; Child age at interview: 13.4±3.5 yr; Child gender: males=80, females=54; Level of injury: paraplegia=88, tetraplegia=46; Severity of injury: AIS A=66, AIS BCD=68.

Intervention: None. Mixed methods. Caregivers answered an open-ended question (qualitative) and completed a survey (quantitative). Children completed surveys only.

Outcome Measures: Caregivers: What has been the most rewarding parenting a child with a SCI. Children with SCI: Revised

Children’s Manifest Anxiety Survey (RCMAS-2-SF), Children’s Depression Inventory (CDI-2-SF), Pediatric Quality of Life Inventory 4.0 (PedsQL; Generic Core Scales), Children’s Assessment of Participation and Enjoyment (CAPE).

Group 1: Data from Caregivers with children 1-18 yr

1.         Caregivers derive a variety of rewards from parenting their children with SCI including:

A.       Enhanced Resilience in Child and Self (71.9%) – child’s accomplishments, improvement/recovery, school/academic achievements and having a positive/optimistic attitude, etc.

B.       Stronger Caregiver–Child Relationship (18%) – spending time together, growing close and providing child with emotional assistance.

C.       Connecting with Others (11.2%) – building relationships with and receiving support with from children and families, with providers and with organizations.

D.       Learning (9.6%) – learning about new experiences, learning about SCI, learning about the child, learning from the child, the caregiver and child learning from each other and learning to advocate.

2.        Just 3.4% of caregivers reported that parenting a child with SCI was like parenting any other child.

3.        Just 2.2% reported that there were no rewards to parenting their child with SCI.

4.        Caregivers who had children who were older at the time of injury (p<0.001) and interview (p=0.017) were more likely to report having an enhanced Caregiver–Child Relationship.

5.        Caregivers without college exposure (p=0.034) and those who were unemployed (p=0.029) were more likely to cite Learning as a reward.

6.        No other significant relationships emerged between caregiver rewards and sociodemographic variables were found.

Group 2: Caregivers of children 7-18 yr who completed quantitative surveys:

7.        Caregivers whose children scored lower on self-reported school and psychosocial HRQOL were more likely to report ‘Resilience in my Child’ as a reward (p<0.05 for both).

8.        Caregivers whose children participated in fewer community activities and participated less often and had lower levels of depressive symptoms reported experiencing an Enhanced Caregiver–Child Relationship (p<0.05 for all).

9.        Caregivers whose children participated in activities further from home and with a broader group (p<0.05 for both) and had higher self-reported psychosocial HRQOL (p<0.05) and self-reported and parent-reported school HRQOL (p<0.001) were more likely to report a Connecting with Others as a reward.

10.      No other significant relationships emerged between caregiver reward type and child anxiety, depression, activity participation or quality of life.

(Kelly et al., 2016)

USA

Observational

N=40

Population: Children with SCI: Age at interview: 11.5±3.2 yr; Age at injury: 4.3±4.2 yr; Gender: males=25, females=15; Time since injury: 6.9±3.9 yr; Level of injury: paraplegia=30, tetraplegia=10; Severity of injury: AIS A=25.

Caregivers: mothers=34, fathers=3, grandmothers=1, grandfathers=1, aunt=1.

Intervention: None. Survey.

Outcome Measures: Children: Pediatric Quality of Life Inventory for Health-Related Quality of Life (HRQOL). Caregivers: Hospital Anxiety and Depression Scale (HADS), Pennebaker Inventory of Limbic Languidness (PILL), Revised Caregiver Burden Interview, short

Form (RCBI), Social Problem-Solving Inventory, revised, short form (SPSI-R:S).

1.         Caregiver problem solving alone was related to child physical HRQOL (p<0.01).

2.        Caregiver mental health (p<0.01), burden (p<0.05), and problem solving were related to child psychosocial HRQOL (p<0.01).

3.        Regression analyses controlling for child age and injury level revealed effective caregiver problem solving (p<0 .001) was significantly related to greater child physical HRQOL.

4.        Regression analyses controlling for child age and injury level revealed effective caregiver problem solving (p<0.01) was significantly related to greater psychosocial HRQOL.

5.        Problem solving orientation was related to both child physical (p<0.01) and psychosocial HRQOL (p<0.001); having a caregiver who demonstrated a positive, as opposed to negative, problem-solving orientation was related to greater child HRQOL.

6.        Problem solving style was related to both physical (p<0.01) and psychosocial HRQOL (p<0.001); caregivers who demonstrated being rational resulted in greater HRQOL among children whereas caregivers who were avoidant resulted in lower HRQOL among children.

7.        Caregivers demonstrating impulsivity and/or carelessness was related to kids having lower psychosocial HRQOL (p<0.05) but was not significantly associated with physical HRQOL.

(Ma et al., 2016)

Canada

Observational

N=174

Population: Pediatric-sustained SCI (<19 yr; n=87): Age: 38.6±12.3 yr; Gender: males=61, females=26; Time post-injury: 24.1±14.0 yr; Level of Injury: C1-4=6, C5-8=35, T1-5=12, T6-L5=34; Severity of injury: complete=41, incomplete=46. Adult-sustained SCI (19+ yr; n=87): Age: 39.5±10.9 yr; Gender: males=62, females=25; Time post injury: 12.8±10.0 yr; Level of injury: C1-4=8, C5-8=33, T1-5=11, T6-L5=35. Severity of injury: complete=40, incomplete=45.

Intervention: None. Secondary analysis of data from the Study of Health and Activity in People with SCI (SHAPE-SCI) (Martin Ginis et al., 2008).

Outcome Measures: Functional Independence Measure (FIM) motor subscale, Short Form 36 (SF-36), number of physician visits, Patient Health Questionnaire 9-item (PHQ-9), Physical Activity Recall Assessment for People with Spinal Cord Injury (PARA-SCI), Craig Handicap Assessment and Reporting Technique (CHART), Satisfaction with Life Scale (SWLS)

1.         Compared to adult-sustained SCI, participants with paediatric-sustained SCI reported significantly greater functional independence (FIM motor subscore; p=0.03), less pain (SF-36 pain subscore; p=0.02), and fewer visits to the doctor in the past year (p=0.04).

2.        There were no significant differences between adult- or pediatric-sustained SCI groups with respect to perceived health status (SF-36 general health subscore) or depressive symptoms (PHQ-9).

3.        Compared to adult-sustained SCI, those with pediatric-sustained SCI reported more minutes of moderate–heavy leisure time physical activity (PARA-SCI; p=0.05), and scored higher on measures of social and occupational participation (CHART; p=0.04 and p=0.03, respectively).

4.        There were no significant differences between adult- or pediatric-sustained SCI groups with respect to life satisfaction.

(M. Hwang et al., 2015)

USA

Observational N=159

 

Population: Age at interview: 35.0±6.2 yr; Time since injury: 21.2±7.2 yr; Gender: males=100, females=59; Level of injury: C1-4=24, C5-C8=57, T1-S5=62, other=16; Severity of injury: paraplegia=67, tetraplegia=92.

Intervention: None. Survey.

Outcome Measures: Routine medication use, polypharmacy (use of 5+ different medications), secondary health conditions (SHC), Functional Independence Measure, Short Form-12 Health Survey (SF12v2), Craig Handicap Assessment and Reporting Technique (CHART), Patient Health Questionnaire 9-item (PHQ-9).

1.         There were no significant differences in the frequency of polypharmacy between men and women (p=0.418), between Caucasians and non-Caucasians (p=0.756) or between those with complete and incomplete injuries (p=0.898).

2.        There were significant differences in polypharmacy frequency among the AIS severity groups: C1-4 ABC, 54.2%; C5-8 ABC, 35.1%; T1-S5 ABC, 19.4%; AIS D, 25.0% (p=0.014); polypharmacy was more prevalent in tetraplegia than in paraplegia (p=0.003).

3.        Individuals with polypharmacy had significantly older age (p=0.034), longer duration of injury (p=0.017), greater number of SHCs (p<0.001), and higher PHQ-9 total score (p=0.001), but significantly lower FIM motor score (p<0.001), SF12v2 physical component score (p<0.001), CHART physical independence, mobility, occupation and social integration scores (p=0.009, p<0.001, p=0.001, and p=0.037, respectively).

4.        Greater number of SHCs, increasing duration of injury and tetraplegia increased odds of polypharmacy (p<0.001, p=0.028, and p=0.010, respectively.

5.        Polypharmacy was predictive of decreased CHART mobility scores (p<0.001), decreased SF12v2 physical component scores (p<0.001) and increased PHQ-9 scores (p<0.001) when controlling for the number of SHCs, age, duration of injury and AIS severity.

(January et al., 2015)

USA

Observational

N=177

Population: Pediatric-onset SCI: Age at interview: 33.5±7.1 (19-50) yr; Age at injury: 13.5±4.6 (0-18) yr; Time since injury: 19.5±8.2 (1-43) yr; Gender: males=110, females=67; Severity of injury: tetraplegia=100, complete=125.

Intervention: None. Survey.

Outcome Measures: Pittsburgh Sleep Quality Index (PSWI),

Short-Form 12 (SF-12) physical subscore, Beck Anxiety Inventory (BAI), Patient Health

Questionnaire 9 item (PHQ-9), Satisfaction with Life Scale (SWLS).

1.         Half the subjects (51.4%) self-reported poor sleep quality within the last month (51.4%) demonstrating significantly more difficulties than control group norms, but significantly fewer than sleep-disordered patient norms.

2.        Subjects with pediatric-onset SCI were comparable to controls in the area of sleep disturbances, and also similar to the sleep-disordered patient group on sleep efficiency and sleep latency scores.

3.        Subjects with pediatric-onset SCI were most likely to report difficulty getting to sleep (67.8%) and/or staying asleep (65%) at least once in the last month; bathroom use (40.1%) and sleep interference due to pain (40.1%) were also reported.

4.        Older age (p=0.008) and tetraplegia were associated with lower sleep quality (p=0.011) whereas injury etiology, completeness of injury, sex, ethnicity, injury duration, and age of injury were not.

5.        Low sleep quality was strongly related to physical functioning (SF-12), both in activity-interfering pain (p<.001) and general health (p<0.001).

6.        After controlling for age, injury severity, and physical health components, sleep quality explained a significant portion of the variance in depression (p<0.001) and anxiety (p=0.005), but not in life satisfaction.

(Riordan et al., 2015)

USA

Observational

N=340

Population: Age: 13.2.2±3.9 yr; Gender: males=194, females=146; Age at Injury: 8.2±5.8 yr; Three Level/ Severity Injury Groups: tetraplegia AIS ABC=96, paraplegia AIS ABC=191, AIS D=53.

Intervention: None. Survey.

Outcome Measures: Children’s

Assessment of Participation and Enjoyment (CAPE), Pediatric Quality of Life Inventory (PedsQL), Revised Children’s Manifest Anxiety Scale (RCMAS), Children’s Depression Inventory (CDI).

1.         Subjects with paraplegia ABC and AIS D injuries participated in more activities than those with tetraplegia ABC (p=0.002 and p=0.018, respectively).

2.        There were no significant differences between the participation frequency of subjects with paraplegia ABC and those with AIS D injuries.

3.        Subjects with paraplegia ABC reported higher social QOL than those with tetraplegia ABC (p=0.001) and AIS D injuries (p=0.002).

4.        There were no differences between subjects in the three neurological impairment categories when examining scores exceeding the clinical cut-off for anxiety or depression.

(Klaas et al., 2014)

USA

Observational

N=236

Population: Age: 15.6±2.0 yr; Gender: males=137, females=99; Age at Injury: 10.6±5.5 yr; Level and Severity of Injury: C1-4 AIS ABC=26, C5-8 AIS ABC=47, paraplegia AIS ABC=120, AIS D=28, missing=15.

Intervention: None. Survey.

Outcome Measures: Children’s Depression Inventory (CDI), Beck

Depression Inventory-II (BDI-II), Revised Children’s Manifest Anxiety Scale (RCMAS).

1.         Girls were significantly more anxious than boys (p=0.030).

2.        There was a significant interaction for child anxiety by child age and sex (p=0.020); older adolescent girls were more anxious than younger adolescent girls and boys and older adolescent boys.

3.        Older adolescents (16-17 yr) were significantly more depressed than younger

4.        adolescents (12-15 yr) (p=0.040).

5.        Regarding depression, there was no significant interaction between child age and sex.

6.        Among adolescents (12-17 yr), 16% reported that they think about suicide but would not follow through and 1.1% indicated they wanted to commit suicide.

7.        Among 18-yr-olds, 10.9% indicated that they have thought about suicide but would not carry it out, and none responded that they wanted to kill themselves.

8.        Among youth overall, 12.4% were receiving counseling services; 17.4% were taking medications for emotional, psychological, or behavioral reasons; and 23.3% were enrolled in counseling and/or taking medications.

9.        Older adolescents (23.5%) were significantly more likely to be on medications than younger adolescents (10.1%) (p=0.009].

(Hwang et al., 2014b)

USA

Observational

N=283

Population: Pediatric-onset SCI: Age: 27.3±3.7 (21-37) yr; Age at injury: 14.5±4.3 (0-18) yr; Time since injury: 12.7±5.0 (4-30) yr; Gender: males=182, females=101; Level of injury: tetraplegia=174; Severity of injury: complete=195; C1-4 AIS ABC=46, C5-8 AIS ABC=110, T1-S5 AIS ABC=99, AIS D=28.

Intervention: None. Annual interviews.

Outcome Measures: Satisfaction with Life Scale (SWLS), Short-Form 12 Health Survey (SF-12), Patient Health Questionnaire-9 (PHQ-9), and Craig Handicap Assessment and Recording Technique (CHART).

1.         Those attaining a bachelor’s degree or higher had increased from 33.2% at the first interview to 47.0% at the last interview;

2.        There was no change in the proportion of employed versus unemployed from the first (56.8% versus 43.2%) to last interview (58.1% versus 41.9%) (less than general population estimates);

3.        At the last interview, the proportion of employed participants was significantly higher in those with a baccalaureate and post-baccalaureate degrees, whereas the proportion of unemployed individuals was higher in those with a high school diploma.

4.        Women and married participants also had higher rates of employment at the last interview than men and single participants, respectively.

5.        There was no significant change in employment status over time (OR 1.01, confidence interval (CI) 0.98-1.04).

6.        Odds of employment increased over time in participants who were women (1.04, CI 1.00-1.08), married (1.05, CI 1.02-1.08), attained a baccalaureate degree (1.03, CI 1.00-1.07), or post-baccalaureate degree (1.05, CI 1.02-1.08).

7.        Odds of employment decreased over time in participants with occurrence of autonomic dysreflexia (0.80, CI 0.65-0.99), spasticity (0.80, CI 0.59-0.99) or chronic medical condition (0.83, CI 0.71-0.98).

8.        Life satisfaction (SWLS) scores increased over time in those who remained employed (1.11, CI 1.01-1.22).

9.        Odds of depression (PHQ-9) increased over time in those who remained unemployed (1.13, CI 1.04-1.23).

(January et al., 2014)

USA

Observational

N=214

Population: Pediatric-Onset Adult SCI: Age: 29.5±5.2 (24-42) yr; Mean age at injury: 13.9±4.4 yr; Gender: males=133, females=81); Level of Injury: tetraplegia=124, paraplegia=90; Severity of Injury: complete=150, incomplete=64.

Intervention: None. Survey.

Outcome Measures: Craig Handicap Assessment and Reporting Technique (CHART), Patient Health Questionnaire – 9 Item (PHQ-9), Functional Independence Measure (FIM), Short Form 12 Item Version 2 (SF12v2), Alcohol Use Disorders Identification Test (AUDIT-C).

1.         Overall, mean PHQ9 was low at baseline (3.07±0.24); only 8% met the criteria for MDD at any given time point.

2.        A much higher percentage reported at least mild symptoms (38%), and 12% endorsed suicidal thoughts at any given time point.

3.        Multilevel growth modeling analyses were used to explore depression symptoms across time; several factors emerged as significant predictors of depressive symptoms in the final model:

·          less community participation (p<0.01);

·          incomplete injury (p=0.02);

·          hazardous drinking (p=0.02);

·          bladder incontinence (p=0.01);

·          pain (p=0.03)

4.        Marriage resulted in decreases in depression scores for individuals (p=0.02).

(Schneider et al., 2014)

Switzerland

Cohort

N=12

Population: Age: 7.5 yr; Gender males=10, females=2; Time post diagnosis: 4.2 yr (high grade=2.4 yr, low grade=5.9 yr).

Intervention: None. Survey sent after patients had microsurgical removal of a primary intramedullary spinal cord tumours (total resection=5, subtotal resection=7).

Outcome Measures: Pediatric Quality of Life Inventory (PedsQL).

1.         Among 10 patients who completed the survey, there were no significant differences in PedsQL scores (child or parent proxy) between the study cohort and values for a normative (healthy) control sample population.

*Not significantly powered; authors’ power analysis demonstrates a sample of 57 patients is required.

(Harder et al., 2013)

USA

Observational

N=24

Population: Age: 11.5±3.4 (5-18) yr; Age at injury: 9.7±4.8 (1-17) yr; Gender: males=9, females=15; Injury etiology: Transverse Myelitis; Level of injury: cervical (N=13); Ambulation: normal=46%, abnormal but ambulated independently=79%, bilateral support (i.e., crutches) =29%, wheelchair-bound=8.3%.

Intervention: None. Neuropsychological evaluation, patient and caregiver surveys.

Outcome Measures: Behavior Assessment System for Children, Sec­ond Edition (BASC-2; 5–18 yr).

1.         According to parent report on the BASC-2, subjects experienced subclinical (21.7%) or clinical (8.7%) levels of depression in a total of 29% of participants.

2.        Of the seven partici­pants who showed elevated symptoms of depression based on parent report, two received referrals for addi­tional cognitive testing.

3.        Of the 11 participants who were prescribed medication (i.e., SSRIs, GABAergic medications, tricyclic antidepressants, and anticholinergic agents), only two were referred for further cognitive testing.

4.        No clear association between cogni­tive dysfunction and mood-related factors or adverse medication side effects.

(Smith et al., 2013)

USA

Observational

N=182

Population: Age: 15.9±1.7 (13-18) yr; Gender: males=104, females=78; Level of injury: paraplegia=115, tetraplegia=67; Severity of injury: complete=98, incomplete=84.

Intervention: None. Survey.

Outcome Measures: Kidcope, Children’s Depression Inventory (CDI), Revised Children’s Manifest Anxiety Survey (CMAS), Quality of life (PedsQL).

 

Note: “Escape-Oriented Factor” includes distraction, social, withdrawal, self-criticism, blaming others, wishful thinking, resignation and emotion regulation yelling

1.         Cognitive restructuring and resignation were the two most frequently used coping strategies reported.

2.        In contrast, blaming others and self-criticism were used least frequently.

3.        Social support and emotional regulation (calming) were seen as the most effective coping strategies, whereas self-blame and wishful thinking were perceived as least effective.

4.        Increased SCI injury duration was associated with lower use of escape-oriented coping strategies.

5.        Increased age was associated with increased social withdrawal.

6.        Participants with tetraplegia used distraction more often than participants with paraplegia.

7.        After controlling for current age, age at injury, sex and injury level, hierarchal linear regression models showed increased scores on the escape-oriented factor were associated with increased anxiety and depressive symptomatology and lower psychosocial QOL (p<0.001 for all).

(Castello et al., 2012)

USA

Pre-Post

N=6

Population: Age: 16.6±4.4 yr; Gender: males=3, females=3; Time since injury: 3.9±3.1 yr; Level of injury: Cervical=4, Thoracic=2; Severity of injury: AIS A=3, AIS B=1, AIS C=1, AIS D=1.

Intervention: Functional Electrical Stimulation (FES) cycling. Stimulators were placed on hamstrings, quadriceps and gluteal muscles (45-50 rpm, 250 µs, 33.3 Hz, 70-120 mA). Sessions were 30 min, 3 times per wk over 9 mo.

Outcome Measures: Pediatric Quality of Life Inventory (PedsQL).

1.         Four of the six participants completed the PedsQL on at least 2 occasions.

2.        Mean Psychosocial Health Summary Score for 4 participants at their initial evaluation was 66.67±7.82 (range 61.67-78.33).

3.        Post intervention, quality of life increased for 3 of 4 subjects (mean=73.75±11.41, range=60.00-86.67).

4.        The mean change from initial to final PedsQL was 7.08±8.21, although change scores ranged from −3.33 to 16.67 (non-significant).

5.        Non-significant, positive, correlations were found between change in QOL and both total biking sessions and number of months biked (rs = 0.60 and rs = 0.74, respectively).

6.        Non-significant, positive, correlations were found between initial and final QOL (rs = 0.60 and rs = 0.80) and the months post injury.

(Hwang et al., 2012)

USA

Observational

N=215

Population: Pediatric-onset SCI: Age at interview: 23.3±0.9 yr; Age at injury: 13.2±4.9 yr; Time since injury: 10.3±5.0 yr; Gender: males=126, females=89. Level of injury: tetraplegia=51.6%; Severity of injury: complete=73.5%, C1-4 AIS ABC=11.2%, C5-8 AIS ABC=35.3%, T1-S5 AIS ABC=43.3%, AIS D=8.8%, missing=1.4%.

Intervention: None. Survey.

Outcome Measures: Functional Independence Measure (FIM), Satisfaction with Life Scale (SWLS), Short-Form 12 Health Survey (SF-12), Patient Health Questionnaire-9 (PHQ-9) Depression Scale, and Craig Handicap Assessment and Recording Technique (CHART), use of tobacco, alcohol, and marijuana.

1.         Prevalence rates of regular substance use were 27.9% for tobacco, 55.4% for alcohol and 10.7% for marijuana (Table 2). These rates are considerably lower than the age-matched general population values.

2.        Tobacco use was higher in participants who were unemployed than those employed either full- or part-time (38% versus 21%).

3.        Alcohol use was higher in participants who were Caucasian (60 versus 26% non-Caucasian), had a college degree (80% versus 47% no college degree), were employed (70% versus 45% unemployed), had higher annual income (44%, $10 000 versus 65%, $10000-29999 versus 77%, >$30000), were single (59% versus 31% married) and able to drive independently (67% versus 35% cannot drive independently).

4.        Marijuana use was more prevalent in males (14% versus 6% female) and those without a college degree (13% versus 2% college degree).

5.        There was no significant difference in the prevalence of substance use between those living independently, or in relation to any injury-related factors such as level, severity or duration of injury.

6.        Individuals with regular alcohol use had significantly lower incidence of urinary tract infections (64 versus 82%) and chronic medical conditions (11 versus 22%) compared with individuals with no use.

7.        Tobacco use was significantly associated with depressive symptoms (PHQ-9; p<0.05).

8.        Alcohol use was associated with higher socio-cognitive independence (FIM; p<0.01), better perceived physical health (SF-12 physical, CHART physical, CHART mobility; p<0.05 for all), and increased community participation (CHART social; p<0.05).

9.        Marijuana use was not associated with any outcome measure.

10.      There was no association between SWLS and substance use of any type.

11.       Logistic regression indicated that both unemployment and the presence of depressive symptoms contribute independently to tobacco use (p<0.05)

12.      Logistic regression indicated that having a college degree (p<0.05) and being single were found to contribute most in predicting regular alcohol drinking (p<0.01), while independent mobility (p<0.01) was also a significant predictor for use.

13.      Logistic regression indicated those with a college degree were less likely to use marijuana (p<0.05).

(Boyer et al., 2012)

USA

Observational

N=109

Population: Pediatric-onset SCI: Age at interview: 17.8±3.7 (11-24) yr; Age at injury: 11.2±5.7 (0-19) yr; Gender: males=59, females=50; Time since injury: 6.6±4.9 (1-23) yr.

Intervention: None. Survey.

Outcome Measures: Post Traumatic Stress (PTS) via Post-traumatic Diagnostic Scale and the Child Post Traumatic Stress Disorder Symptom Scale; Family Functioning (FF) via Family Assessment Device; and Functional Independence (FI) via Pediatric Orthopedic Surgeons of North America Pediatric Musculoskeletal Functional Health Questionnaire.

1.         Structural equation modeling path analyses were used to test and confirm 3 hypothesized models:

A.       PTS mediated the relationship between FF and FI;

B.       The Avoidance symptom cluster of PTS mediated the relationships between PTS reexperiencing symptoms and FI, and between the PTS Arousal symptom cluster and FI; and

C.       The previous 2 models showed adequate fit to the data when integrated into an overarching model depict the interrelationship of level of SCI (tetraplegia v. paraplegia), FF, PTS symptom clusters, and FI.

(Kelly, Klaas, et al., 2012)

USA

Observational

N=340

Population: Group: Children (6-12 yr) =133, Adolescents (13-18 yr) =207. Age: 13.3±3.8 yr. Time since injury: 5.1±4.3 yr, Level of injury: paraplegia=224; Severity of injury: complete=187.

Intervention: None. Survey.

Outcome Measures: Children’s Assessment of Participation and Enjoyment (CAPE; i.e., participation, diversity, frequency, intensity, context), Pediatric Quality of Life Inventory – Psychosocial Health Scale (PHS) (only emotional, social, school subscales).

1.         For children (6-12 yr), Regression analysis showed that where children participate (i.e., further from home) positively and significantly predicted QOL subscales after controlling for age, sex, injury level, and injury duration.

2.        For adolescents (13-18 yr), regression analysis showed that subject characteristics “who” (i.e., being male, having paraplegia, and participating with a more diverse group) positively, and significantly predicted QoL after controlling for child age, sex, injury level, and injury duration.

(Chlan et al., 2011)

USA

Observational

N=298

Population: Age: 31.1±5.5 (24-45) yr; Gender: males=184, females=114, Time since injury: 16.6±6.5 (6-38) yr; Level of injury: tetraplegia=165; Severity of injury: AIS A=210.

Intervention: None. Survey.

Outcome Measures: Brief Coping with Problems Experienced (Brief COPE), Functional Independence Measure (FIM), Craig Handicap Assessment and Reporting Technique (CHART), Short-Form Health Survey 12 (SF-12) and Satisfaction with Life Scale (SWLS), Importance of Religion (5-pt scale).

1.         Approximately half (141) of the participants reported that religion is ‘important to very important’ to them.

2.        Mean spirituality coping score was 5.14±2.32, range 2-8), with 55% (163) of respondents using spiritual coping ‘a medium amount to a lot’.

3.        Importance of religion was positively correlated with age (p<0.01), duration of injury (p<0.01), mental component summary (SF-12; p<0.05) and life satisfaction (SWLS; (p<0.05).

4.        Spiritual coping (Bref-COPE) was positively correlated with age (p<0.01), duration of injury (p<0.01) and life satisfaction (SWLS; (p<0.01).

5.        Spiritual coping (Bref-COPE) was negatively correlated with FIM motor and CHART occupation (p<0.01 for both).

6.        A stepwise regression analysis with life satisfaction (SWLS) as the outcome variable showed the following significant predictors: greater perceived mental health, being married/having domestic partner, greater occupational participation, lower incidence of pain and greater motor functioning (p<0.05 for all; 40% variance explained).

(Garma et al., 2011)

USA

Observational

N=197

Population: Age at interview: 12.8±3.7 yr; Age at injury: 6.8±5.6 yr; Gender: males=107, females=90; Time since injury: 6.0±4.7 yr; Level of injury: paraplegia=136, tetraplegia=61. Caregivers: mothers=158, fathers=39

Intervention: None. Survey.

Outcome Measures: Pediatric Quality of Life Inventory (PedsQL) – only the Psychosocial Health Summary Subscale (PHSS) (i.e., emotional, social, school functioning), Revised Children’s Manifest Anxiety Survey (RCMAS), Children’s Depression Inventory (CDI), Beck Anxiety Inventory (BAI) I or II.

1.         Child- and caregiver-report scores on each of the PedsQL subscales and the PHSS from the SCI sample were significantly lower than child- and caregiver-report scores from a normative sample of youth without chronic health conditions (p<.001).

2.        With respect to the PedsQL, there was a moderate degree of association between child- and caregiver-reports (.34 – .54); there were small effect sizes for the Emotional (.31) and School (.19) child-caregiver comparisons, and medium effect sizes for the Social (.66) and Overall PHSS (.51) child-caregiver comparisons where children consistently rated their QOL of life as better than did the caregiver-reporters.

3.        Younger age at interview was associated with higher Emotional QoL (PedsQL) in the caregiver-reports (p<0.05), but lower social QoL (PedsQL) in the child-reports (p

4.        Younger age at injury was associated with higher Emotional QoL (PedsQL) (p<0.05).

5.        Child and parent-reported anxiety and caregiver depression were significantly related to all aspects of child- and caregiver-report QoL (PedsQL) (p<0.01 for all).

6.        QoL (PedsQL) did not vary by gender; however, those with paraplegia had higher social QoL than those with tetraplegia (p=0.046).

7.        Regression analyses showed that child mental health significantly predicted child-report QoL (PedsQL) (p<.001), whereas child (p<.001) and caregiver (p<.001) mental health both significantly predicted caregiver-report QoL (PedsQL).

(Kelly et al., 2011)

USA

Observational

N=203

Population: Children: Age at interview: 12.7±3.2 yr; Age at injury: 7.0±5.4 yr; males=108, females=95; Level of injury: paraplegia=142, tetraplegia=61; Severity of injury: complete=102, incomplete=101.

Caregivers: mothers=158, fathers=29, stepmothers=2, grandmothers=10, aunts=2, grandfathers=2.

Intervention: None. Survey.

Outcome Measures: Caregivers Measures: Beck Anxiety Inventory (BAI), Beck Depression Inventory (BDI). Child Measures: Revised Children’s Manifest Anxiety Survey (RCMAS), Children’s Depression Inventory (CDI), Pediatric Quality of Life Inventory (PedsQL).

1.         Caregiver mean BAI score was 8.45±8.43 (0-45) representing the mild range; 16% of caregivers scored in the moderate/severe range.

2.        Caregiver mean BDI was 11.37±10.07 (0-49.50) representing the minimal range; 21% of caregivers scored in the moderate/severe range.

3.        Among caregivers, 9% scored in the moderate/severe range for both anxiety and depression.

4.        Caregiver depression (19% of the variance) was associated with caregivers being female, older child age at injury, and having a child with anxiety and depression (p<0.001).

5.        Caregiver anxiety (14% of the variance) was associated with caregivers being female and having a child with anxiety and depression (p<0.001).

6.        Child anxiety and depression were each significantly related to less caregiver education, lower-rated child social relationships and increased caregiver anxiety and depression (p<0.01 for all); child anxiety was also related to younger current age and shorter injury duration (p<0.05 for both).

7.        Hierarchical regression showed that significant predictors of anxiety (36% of the variance) and depression (26% of the variance) included poor social relationships, caregiver mental health problems and less caregiver education.

(Gorzkowski et al., 2010)

USA

Observational

N=97

Population: Pediatric-onset SCI: Age at interview: 12.5±3.2 yr; Age at injury: 6.8±5.3 yr; males=0, females=97; Level of injury: paraplegia=79, tetraplegia=18; Severity of injury: complete=50, incomplete=47.

Intervention: None. Survey.

Outcome Measures: Children’s Assessment of Participation and Enjoyment (CAPE), Children’s Depression Inventory (CDI), Pediatric Quality of Life Inventory (PedsQL).

1.         On average, subjects participated in 77% of the assessed social activities and 59% of job-related activities; social activities were completed more frequently, further from home, and with a broader group of people than job-related activities.

2.        The relationship between social participation context (CAPE social diversity, intensity, with whom, where) and QOL (PedsQL) was mediated by depression (CDI) (p<0.05); a greater social participation context was associated with decreased depression, which was then associated with greater QOL.

3.        The relationship between job participation (CAPE diversity and intensity) frequency and QOL (PedsQL) was mediated by depression (CDI) (p<0.05); a greater job participation frequency was associated with decreased depression, which was then associated with greater quality of life.

(Anderson et al., 2009)

USA

Observational

N=118

Population: Age: 12.3±3.0 yr; Gender: males=61, females=57; Time since injury: 6.4±4.3 (0-16) yr; Level of injury: tetraplegia=89 participants, paraplegia=29; Severity of injury: AIS A=57, AIS B=13, AIS=22, AIS D=17.

Intervention: None. Interview Survey.

Outcome Measures: Functional Independence Measure (FIM), Children’s Depression Inventory (CDI), Revised Children’s Manifest Anxiety Scale (RCMAS), Pediatric Quality of Life Inventory (PedsQL), Children’s Assessment of Participation and Enjoyment (CAPE).

1.         Mean RCMAS score=9.47±6.31 (13% with clinically significant symptoms of anxiety).

2.        Mean CDI score=7.57±6.87 (6% with clinically significant symptoms of depression).

3.        Neither anxiety (RCMAS) nor depression (CDI) was statistically associated with demographic factors.

4.        Anxiety (RCMAS) was associated with a shorter duration of injury.

5.        Depression (CDI) was not associated with injury-related factors but was associated with lower FIM scores.

6.        When compared with the outcomes of community participation (CAPE) and quality of life (PedsQL), anxiety (RCMAS) and depression (CDI) were each only associated with community participation, in that the more anxious or depressed children were more apt to do activities closer to their homes rather than at someone else’s house or in the community.

7.        Lower total quality-of-life (PedsQL) ratings for all subscales were associated with both anxiety (RCMAS) and depression (CDI).

8.        Regression showed that anxiety (RCMAS) alone accounted for 56% of the variance in quality of life, whereas depression (CDI) accounted for 3% of the variance in quality of life after controlling for anxiety.

(Chen et al., 2008)

USA

Observational

N=278

Population: Pediatric-onset SCI (<18 yr): Age: 27.1±3.4 yr; Gender: males=184, females=94; Time since injury: 12.8±4.9 yr; Level of injury: C1-T6=210, T7-S5=68; Severity of injury: complete=189, incomplete=88.

Intervention: None. Survey at multiple time points over 10 yr.

Outcome Measures: Functional Independence Measure (FIM), Craig Handicap Assessment and Reporting Technique (CHART), Short-Form 12 (SF-12), and Satisfaction with Life Scale (SWLS).

1.         Mean SWLS score for the study population (24.8) was somewhat higher than the mean of 19.4-21.6 from a normative study of persons with adult-onset SCI.

2.        Initial life satisfaction (SWLS) was significantly higher for women (p=0.01), those who were married or living with a partner (p<0.01); had college or higher education level (p=0.04); were employed or students (p<0.01); did not use illicit drugs (p<0.01); were free of medical complications in the past year (p=0.02); had higher FIM scores (p<0.01); had higher self-perceived mental health (SF-12; p<0.01)); and had a perfect score in CHART mobility, occupation, and social integration (p<0.01 for all), compared with their counterparts.

3.        Initial life satisfaction (SWLS) did not differ by age, race, living situation, age at injury, duration of injury, level and completeness of injury, FIM sphincter control, FIM locomotion, SF-12 physical health, or CHART physical independence.

4.        On average, SWLS scores increased by 0.14 per year over the course of follow-up (p=0.10), which was significant for those who were employed or students (0.25/yr, p=0.02), lived independently (0.21/yr, p=0.05), had injury level at T7-S5 (0.49/yr, p=0.006), and had medical problems in the past year (0.22/yr, p=0.02).

5.        The rate of change in SWLS was not significantly different by sociodemographic variables, presence of medical complications, or physical and psychosocial functioning.

6.        Multivariable analysis showed that initial SWLS was significantly associated with sex, marital status, employment status, illicit drug use, FIM motor score, SF-12 mental health, and CHART social integration subscale (p<0.05); rate of change in SWLS was not significantly associated with any factors under investigation.

(Anderson et al., 2007)

USA

Observational

N=232

Population: Pediatric-Onset Adult SCI: Age: 30.8±5.1 (24-42) yr; Gender: males=145, females=86; Time since injury: 16.1±6.2 yr; Level of injury: tetraplegia=136, paraplegia=96; Severity of injury: complete=159, incomplete=73.

Intervention: None. Interview Survey.

Outcome Measures: Functional Independence Measure (FIM), Short-Form-12 (SF12), Craig Handicap Assessment and Reporting Technique (CHART), Satisfaction with Life Scale (SLS), Patient Health Questionnaire 9 Item (PHQQ9).

1.         PHQ-9 Depressive Symptom Categories: None=20.7%, Minimal=52.5%, Mild=19.8%, Moderate=5.6%, Moderate-Severe=1.3%, Severe=0.4%

2.        There were no significant differences in PHQ-9 based on gender, race, age at injury, age at interview, or duration of injury.

3.        There was a significant difference in PHQ-9 between those with complete and incomplete injuries (p=0.013); those with incomplete injuries showed significantly greater PHQ-9 scores than those with complete injuries did.

4.        Among those with tetraplegia, individuals with incomplete injuries had significantly greater PHQ-9 scores than those with complete injuries (p=0.036).

5.        Among those with paraplegia, there was no significant difference in PHQ-9 scores between those with complete and incomplete injuries.

6.        Except for the CHART subscale of physical independence, all the other CHART subscales and total score show significant differences based on PHQ-9 score (p<.05 for all).

7.        Greater PHQ-9 scores were associated with less employment, less income, less health-related quality of life as measured by the mental component summary score, and less life satisfaction (p<0.05 for all).

8.        Medical complications including pressure ulcers, shoulder pain, and pain at any site were associated with greater PHQ-9 scores (p<0.05 for all).

9.        Regression analysis showed that factors most predictive of depression were perceived mental health (SF-12), incomplete injuries, and CHART cognition and occupation subscales which accounted for 50% of the variance.

(Abresch et al., 2007)

USA

Observational

N=163

(N=61 SCI)

Population: SCI (N=61): Gender: males=24, females=37. Time since injury: >12 mo. Level of injury: T-L2. Spina Bifida (SB; N=42): Gender: males=19, females=23. Obese Controls (N=21): Gender: males=8, females=13. Non-Obese Controls (N=39): Gender: males=19, females=20).

Intervention: None. Survey.

Outcome Measures: Pediatric Quality of Life Inventory (PedsQL).

1.         SCI and SB subjects had significantly lower sub-scores than CTRL subjects on total (p<0.001), physical (p<0.001), emotional (p<0.01), social (p<0.001), and school (p<0.001) PedsQL domains.

2.        Compared to non-obese CTRL subjects, those who were obese had lower sub-scores on the physical (p<0.001), social (p<0.001), and psychosocial (p<0.001) PedsQL domains; there were no significant differences in sub-scores from the emotional and school domains.

3.        There were no significant differences between the sub-scores of obese and non-obese subjects with SCI or SB.

4.        Total mean PedsQL score of non-obese CTRL subjects was significantly higher than that of the obese control group (p<0.02), which in turn was significantly higher than the SCI group (p<0.02) and the SB group (p<0.02).

5.        In comparison with the SB group, the SCI group had significantly higher sub-scores on the social (p<0.001) and school (p<0.001) domains, but similar scores on emotional functioning and total HRQL.

(Anderson et al., 2006)

USA

Observational

N=166

Population: Age at injury=14.2±4.0 yr; Gender: males=115, females=51; Level of injury: tetraplegia=106; Severity of injury: AIS A=105.

Intervention: None. Interview at three different time points.

Outcome Measures: Craig Handicap Assessment and Reporting Technique (CHART), Short-Form 12 (SF-12), and Satisfaction with Life Scale (SWLS).

Living Status

1.         A total of 106 (64%) subjects lived independently at the initial interview and 95 continued to live independently for the remaining 2 follow-up interviews.

2.        Of the 60/166 who were not living independently at the first interview, 48/60 (80%) did not live independently at any interview.

3.        There were no significant differences between those living independent or dependently with respect to demographic, or body structure and function factors.

4.        Those living independently were more functionally independent and have high community participation (CHART total and all subscales except economic self-sufficiency), more likely to be employed, more satisfied with their lives (p<0.030 for all), more likely to be married (p<0.001), less likely to have the medical complications of spasticity, pressure ulcers, and severe UTIs (p<0.050 for all).

5.        Factors most predictive of consistent independent living in the regression were CHART physical independence, mobility, and occupation scores (39% variance).

 

Employment

6.        Excluding students and homemakers, there were 113 individuals who completed 3 interviews of which 72 (64%) were employed at the first interview; 60 continued to be employed at the remaining 2 interviews.

7.        Of the 41 who were not employed at the first interview, 34 (83%) remained unemployed at all interviews.

8.        Those employed at all 3 interviews included a larger percentage of women (81%) than men (57%), a larger percentage of those who were Caucasian (68%) versus other (17%), a larger percentage of those with paraplegia (82%) than tetraplegia (54%), and a larger percentage of those with college degrees (80%) than those with less education (20%).

9.        Those employed were more functionally independent and participated more in the community (CHART subscales physical independence, cognitive independence, mobility, and social integration).

10.      Those consistently employed were also more likely to be married, to live independently, to have greater life satisfaction, less likely to have spasticity (p<0.050 for all).

11.       Factors most predictive of stable employment were being female, being Caucasian, having greater cognitive independence and community mobility (CHART), and living independently (71% variance).

 

Life Satisfaction:

12.      Of the 166 participants, 80 (48%) had good life satisfaction at the first interview, and 64 (84%) continued at the 2 follow-up interviews.

13.      A total of 86/166 (52%) had poor life satisfaction at the first interview and 56 (65%) remained dissatisfied at the 2 follow-up interviews.

14.      There were differences between those with good or poor life satisfaction with respect to demographic, or body structure and function factors.

15.      Factors significantly associated with high life satisfaction scores included functional independence, perceived mental health, participation in the community (CHART total and mobility, occupation, and economic self-sufficiency subscales), fewer medical complications (i.e., pressure ulcers, UTIs, and pain), being married, living independently, and being employed.

16.      Predictive factors of life satisfaction in a regression were show to be CHART occupation subscale and fewer pressure ulcers (56% variance).

(Anderson & Vogel, 2003)

USA

Observational

N=216*

*Same subjects as in (Anderson et al., 2002)

Population: Pediatric-onset SCI: Age at injury: 14.1±4.0 yr, Age at interview: 28.6±3.4 yr, Time since injury: 14.2±4.6 yr; Gender: males=150, females=66; Level of injury: tetraplegia=22, paraplegia=194. Severity of injury: complete=137, incomplete=78.

Intervention: None. Survey.

Outcome Measures: 5-pt rating scale of level of satisfaction on the following domains: transportation in the community, educational achievements, job opportunities, income, recreation and social opportunities, dating opportunities, and sexual experience; Functional Independence Measure (FIM), Craig Handicap Assessment and Reporting Technique (CHART), Short-Form 12 (SF-12), and Satisfaction with Life Scale (SWLS).

1.         Highest satisfaction ratings occurred for the domains of transportation, education, and social/recreation; lowest satisfaction ratings occurred for income, job opportunities, and dating opportunities.

2.        There were no significant differences in satisfaction ratings for any of the domains with respect to injury severity and gender.

3.        In regression modelling, the only demographic factors associated with satisfaction domains were age at interview and gender; women were more satisfied with both income and sexual experiences, and younger age at interview was associated with greater satisfaction with dating opportunities.

4.        In regression modelling, perceived health status (SF-12) was predictive for three satisfaction domains (i.e., education, social/recreational opportunities, and sexual experiences).

5.        Independent living was associated with three satisfaction domains (i.e., satisfaction with job opportunities, dating, and sexual experiences).

6.        Community mobility, frequency of social and recreational activities, and income were each associated with satisfaction in two satisfaction domains.

7.        Global life satisfaction, as measured by SWLS, was significantly associated with each of the domain satisfaction ratings (p<0.001) with regression modelling showing the following domains as significant predictors: dating, job opportunities, education, and income (p<0.05 for all).

(Anderson & Vogel, 2002)

USA

Observational

N=195

Population: Pediatric-onset SCI: Age at injury: 14.1±4.0 yr, Age at interview: 28.7±3.4 yr, Time since injury: 14.6±4.3 yr. Gender: males=134, females=61; Level of injury: tetraplegia=112, paraplegia=194. Severity of injury: complete=83, incomplete=78.

Intervention: None. Survey.

Outcome Measures: Functional Independence Measure (FIM), Craig Handicap Assessment and Reporting Technique (CHART), Short-Form 12 (SF-12), Satisfaction with Life Scale (SWLS).

1.         Among the sample, 40% (n=78) were unemployed, 51% (n=99) were employed, 6% (n=12) were students, and 3% (n=6) were homemakers.

2.        Compared to those unemployed, those who were students, homemakers or employed were significantly less injured (p=0.010), more likely to be living independently (p=0.002), had higher total FIM scores and sub-scores (p=0.001), higher total CHART score and sub-scores (except for social integration) (p<0.05 for all), greater SWLS scores (p<0.001); there was no significant difference between all groups on SF-12.

3.        Compared to those employed, those unemployed had lower FIM (total and subscores) (p<0.006 for all), CHART (total and subscores) (p<0.050 for all), SF-12 physical score (p=0.011), SWLS (p<0.001) but not SF-12 mental score.

(Vogel et al., 2002a)

Part III

USA

Observational

N=216

Population: Age at interview: 28.6±3.4 yr; Age at injury: 14.1±4.0 yr; Time since injury: 14.2±4.6 yr; Gender: males=149, females=67; Level of injury: tetraplegia=57%.

Intervention: None. Survey.

Outcome Measures: Functional Independence Measure (FIM), Craig Handicap Assessment and Reporting Technique (CHART), Short-Form 12 (SF-12), Satisfaction with Life Scale (SWLS).

1.         Pressure ulcers were statistically associated with employment (p<0.001), independent living (p=0.012), driving (p<0.001), marriage (p=0.020), total CHART score (p=0.007), CHART subscales of economic self-sufficiency, mobility, occupation, physical and social integration (p=0.040, p<0.001, p<0.001, p=0.001 and p=0.002, respectively), mental SF-12 scores (p=0.030), and life satisfaction (p=0.001).

2.        Severe UTI was statically associated with employment (p=0.001), independent living (p=0.018), driving (p=0.011), total CHART score (p<0.001), CHART subscales of cognitive, economic self-sufficiency, mobility, occupation and physical (p=0.003, p=0.005, p<0.001, p=0.007 and p=0.001, respectively), SF-12 physical score (p=0.0016), and life satisfaction (p=0.001).

3.        Spasticity was statistically associated with employment (p<0.001), independent living (p=0.009), driving (p=0.010), total CHART score (p=0.005), CHART subscales of mobility, occupation and physical (p=0.003, p<0.001 and p=0.001, respectively) SF-12 physical score (p=0.001), and SF-12 mental score (p=0.043).

4.        Pain was statistically associated with employment (p=0.030), cognitive CHART subscale (p=0.009), SF-12 mental score (p<0.001), SF-12 physical score (p=0.019), and life satisfaction (p<0.001).

5.        Hyperhidrosis was statistically associated with driving (p=0.041), marriage (p=0.043), total CHART score (p=0.025), and occupation CHART subscale (p=0.037).

6.        Respiratory complications were statistically associated with employment (p=0.023), physical CHART subscale (p=0.008), and life satisfaction (p=0.030).

7.        Shoulder pain was statistically associated with CHART subscales of occupation and physical (p=0.009 and p=0.033, respectively), SF-12 physical score (p=0.002), SF-12 mental score (p<0.001), and life satisfaction (p=0.003).

8.        Back pain was statistically associated with economic self-sufficiency CHART subscale (p=0.019), SF-12 physical score (p=0.025), SF-12 mental score (p=0.008), and life satisfaction (p=0.002).

9.        Urinary incontinence was statistically associated with cognitive CHART subscale (p=0.013), SF-12 physical score (p=0.045), and SF-12 mental score (p=0.010).

10.      Elbow contractures were statistically associated with employment (p=0.049) and driving (p=0.016).

11.       Hospitalizations were statistically associated with employment (p=0.047) and CHART subscales of cognitive and economic self-sufficiency (p=0.043 and p=0.017, respectively).

12.      Bowel incontinence was statistically associated with independent living (p=0.026).

13.      Autonomic dysreflexia was statistically associated with SF-12 physical score (p=0.004).

14.      Hip contracture was statistically associated with physical CHART subscale (p=0.044).

15.      Ankle pain was statistically associated with SF-12 physical score (p=0.011) and SF-12 mental score (p=0.038).

16.      Elbow pain was statistically associated with independent living (p=0.045).

17.      Heterotopic ossification was statistically associated with physical CHART subscale (p=0.019).

(Anderson et al., 2002)

USA

Observational

N=216

Population: Pediatric-onset SCI: Age at injury: 14.1±4.0 yr, Age at interview: 28.6±3.4 yr, Time since injury: 14.2±4.6 yr. Gender: males=150, females=66; Level of injury: tetraplegia=22, paraplegia=194. Severity of injury: complete=137, incomplete=78.

Intervention: None. Survey.

Outcome Measures: Functional Independence Measure (FIM), the Craig Handicap Assessment and Reporting Technique (CHART), the Short-Form 12 (SF-12), and the Satisfaction with Life Scale (SWLS).

1.         SWLS was not significantly associated with gender, duration of injury, or race/ ethnicity.

2.        SWLS was significantly associated with both age at injury (p=0.017) and age at interview (p=0.033); SWLS scores for those injured as older adolescents was significantly lower than for those injured at younger ages (p<0.009).

3.        Those with paraplegia showed significantly higher SWLS scores than those with tetraplegia (p=0.032).

4.        FIM total, motor and cognitive sub-scores were significantly related to SWLS (p<0.001).

5.        The total CHART score and all subscale scores (except social integration) were significantly associated with SWLS (p<0.05 for all).

6.        Other outcomes statistically associated with higher SWLS scores include higher education, being employed, higher income, living independently, being married, and driving independently (p<0.05 for all).

7.        Use of illegal drugs was negatively associated with SWLS (p<0.001).

8.        Greater perceived health status (SF-12) was associated with greater SWLS (p<0.001).

9.        A greater number of medical complications was associated with less SWLS (p<0.001).

10.      Multiple linear model with life satisfaction as the outcome showed the following predictors to be significant: age at injury (p=0.008), CHART mobility (p=0.004), marriage (p<0.001), drug use (p<0.001), medical complications (p<0.05), and SF-12 mental health (p<0.001).

(Kannisto & Sintonen, 1997a)

Finland

Observational

N=408 (N=36)

Population: Pediatric-Onset SCI (N=36): Age at Injury: 11.3±5.1 yr; Age at evaluation: 31.3±9.9 yr; Time since injury: 20.0±11.2 yr; Gender: males=25, females=11; Severity of injury: complete=28, incomplete=8; Injury etiology: traumatic=30, medical=5, iatrogenic=1. Controls (N=372): Age: 16-46 yr.

Intervention: None. Survey.

Outcome Measures: 15 Dimensions of Health-Related Quality of Life (15D HRQL): moving, seeing, hearing, breathing, sleeping, eating, communicating, urinary continence,

working, social participation, mental functioning, pain, depression, distress and perceived health (level of health status in each); Overall health status measures with the Visual Analogue Scale (VAS).

1.         Subjects with SCI assigned higher importance to the 15DHRQL dimensions of mental functioning, communicating, social participation and seeing than the control subjects (p<0.05 for all).

2.        The control subjects assigned higher importance to the 15DHRQL dimensions of moving, working, sleeping and eating (p<0.05 for all).

3.        The average level of health status score on 15DHRQL for the SCI group was, on average, 0.906±0.058 (range 0.726-0.996, which was significantly different than controls (0.929±0.083; p<0.05); the most marked deviations from the best level of functioning for subjects with SCI occurred on the dimensions of continence, moving, working and pain.

4.        The average overall health status scores on the VAS, for subjects with SCI, was 82.3±15.5 (range 35-100); a significant correlation between the HRQL and VAS scores was found (r=0.33; p=0.044).

Discussion

The literature search yielded 35 studies concerning the psychosocial adjustment of individuals with pediatric-onset SCI and/or their caregivers; The majority of those were observational studies and utilized a self-report survey design.

The prevalence of both depression and anxiety in children with SCI seems to be comparable to that in their typically developing peers and lower than that in adults with SCI (Klaas et al. 2014). In Klass and colleagues (2014) study, 236 adolescents with SCI, depression, and anxiety were present in 5.5% and 10.6% of participants, respectively. In another study involving 24 children with transverse myelitis and their parents, approximately 8.7% of the children experienced clinical levels of depression according to parent reports (Harder et al. 2013). For adults with pediatric-onset SCI, the overall severity and incidence of depressive symptoms did not differ from those who acquired SCI during adulthood (Ma et al. 2016). Kelly et al. (2011) investigated the incidence of depression and anxiety in 203 primary caregivers of children with SCI and found that 6 and 21% of caregivers scored in the range of moderate or severe anxiety and depression, respectively.

Like in children without disabilities, the incidence of depression and anxiety in children with SCI differ by gender and age. When comparing psychosocial outcomes among adolescents with SCI between ages 12 and 18, Klaas et al. (2014) found that older adolescents were more likely to experience depression than their younger peers. Older Adolescent girls with SCI, in particular, were more likely to experience anxiety than their male counterparts and younger girls with SCI. Researchers have also identified various clinical factors associated with depression and/or anxiety in the pediatric SCI population. For example, in children with SCI, a shorter duration of injury is associated with the occurrence of anxiety (Anderson et al. 2009), and poor social relationships, having a caregiver with mental health problems and having a caregiver with less education predicted both anxiety and depression (Kelly et al. 2011). In adults with pediatric-onset SCI, low levels of community participation, polypharmacy (i.e., having to take multiple medications), hazardous drinking, bladder incontinence, and pain have been identified as predictors of depression (M. Hwang et al. 2015; January et al. 2014). Interestingly, adults with pediatric-onset SCI who have incomplete injury seem to be at higher risk of experiencing depression than those with complete injury, and incomplete injury was found to predict depression in two studies (Anderson et al. 2007; January et al. 2014). Furthermore, according to a recent study by January et al. (2015), poor sleep quality may contribute to both depression and anxiety in adults with pediatric-onset SCI. In their work examining predictors of caregiver psychological functioning and relationships between caregiver and child psychological outcomes., Kelly et al. (2011) found that having a child who was older at the time of injury predicted depression among caregivers; in addition, being female and having a child with mental health problems predicted caregiver anxiety and depression.

Depression and anxiety have been linked to a wide range of negative health and social outcomes in the pediatric-SCI population, such as low health-related quality of life (Anderson et al. 2009; Anderson et al. 2007; Garma et al. 2011). As demonstrated by Anderson et al. (2007), depression, in particular, is associated with unemployment, low income, as well as, less life satisfaction in children and adolescents with SCI. Lower depression in children with SCI, on the other hand, is related to favorable outcomes such as better parent-child relationships (Morrison et al. 2017). Moreover, it is worth noting that depression and anxiety may impact patterns of community participation in children with SCI. Specifically, children with SCI who are more anxious or depressed are more likely to engage in activities close to their homes rather than at someone else’s house or in the community (Anderson et al. 2009)

With respect to life satisfaction, no significant differences have been observed between individuals who acquired SCI during their childhood and those who sustained SCI as adults (Ma et al. 2016). Within the pediatric SCI population, life satisfaction is not significantly associated with gender, duration of injury, or race/ethnicity (Anderson et al. 2002). In their study involving 216 adults with pediatric-onset SCI, Anderson et al. (2002) also found that participants with tetraplegia had significantly lower satisfaction than those with paraplegia, and participants who were injured in their late adolescence had significantly lower life satisfaction than those with earlier onset of the injury. In addition, community and occupational participation, being married/having a partner, not using illicit drugs, high perceived mental health, functional independence, and low occurrence of medical complications have been identified as significant predictors of life satisfaction in individuals with pediatric-onset SCI (Anderson et al. 2002; Anderson & Vogel 2003; Anderson et al. 2006; Chen et al. 2008; Chlan et al. 2011; Vogel et al. 2002a). Anderson and Vogel (2013) investigated domain-specific satisfaction levels in 216 adults with pediatric-onset SCI. The results revealed that the highest satisfaction ratings occurred for the domains of transportation, education, and social/recreation. Dating opportunities, job opportunities, and income, in contrast, had the lowest ratings but were found to contribute significantly to participants’ overall life satisfaction (Anderson & Vogel 2003). Studies examining the longitudinal trend of life stratification in adults with pediatric-onset SCI have shown that life satisfaction tends to increase over time, especially among participants who remained employed (Chen et al. 2008; Hwang et al. 2014b). However, as pointed out by Chen et al. (2008), adults with pediatric-onset SCI who are unsatisfied with life initially are likely to stay unsatisfied over time if the critical factors impeding their levels of life satisfaction remain unchanged or unaddressed.

Previous research has shown that QoL in both children with SCI and adults with pediatric-onset SCI is considerably lower than that in those without disabilities or chronic conditions (Abresch et al. 2007; Garma et al. 2011; Kannisto & Sintonen 1997a). Interestingly, as revealed in Kannisto and Sintonen’s (1997a) study, individuals with and without pediatric-onset SCI tend to place different emphases when evaluating their QoL. In their sample of 372 adults with pediatric-onset SCI and 36 without disabilities, The SCI group assigned higher importance to the dimensions of mental functioning, communicating, social participation, and seeing and lower for moving, working, sleeping, and eating compared to participants without disabilities, when assessing their QoL (Kannisto & Sintonen 1997a). Among children with SCI, those with paraplegia have demonstrated higher QoL, especially in the social aspect, than their peers with tetraplegia (Garma et al. 2011; Riordan et al. 2015). Kelly, Klaas et al. (2012) looked at the relationship between participation and QoL in children (between ages 6-12) and adolescents (between ages 13-18) with SCI. The study found that children, participating in activities further from home predicted higher QoL for children, and participating in activities with a more diverse group predicted higher QoL. These findings suggest that encouraging activity participation outside the home may promote QoL of children with SCI, and fostering participation with a more diverse group may improve QoL in adolescents with SCI (Kelly, Klaas, et al. 2012). The role of parental characteristics in influencing the QoL in children with SCI has also been highlighted in the literature. As revealed in a recent study by Kelly et al. (2016), parents’ effective problem solving was related to high physical and social health-related quality of life in children with SCI. To date, only one small-scale intervention study targeting QoL in the pediatric SCI population has been conducted. In their pilot study involving six children with SCI, Castello et al. (2012) found that FES cycling exercises were effective in improving QoL in study participants.

Smith et al. (2013) examined coping strategies and their association with psychosocial outcomes in 282 adolescents with SCI and found that cognitive restructuring and resignation were the most frequently used coping strategies among participants, whereas blaming others and self-criticism were the least frequently used. Furthermore, active coping strategies were perceived as effective in reducing SCI-related distress by participants. Escape-oriented coping, in contrast, was linked to negative psychosocial outcomes, such as depression and anxiety. (Smith et al. 2013). In adults with pediatric-onset SCI, religion has been identified as a commonly used and effective tool of coping. In their sample of 298 adults with pediatric SCI (Chlan et al. 2011), approximately half (55%) of the participants reported using religion as a way of coping. Furthermore, the higher perceived importance of religion was linked to higher life satisfaction among study participants.

Overall, while many studies have tackled the psychosocial domain of pediatric SCI, intervention studies focusing on this area are clearly lacking. Moreover, given the influences of caregivers on the well-being of children with SCI, it is important for future clinical interventions aiming to promote psychosocial adjustment in the pediatric SCI population to target both children with SCI and their caregivers.

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