Background: Psychosocial health can be conceptualized as being mentally, emotionally, and socially well. Little is known about normative psychosocial development among children and adolescents with spinal cord injury (SCI). Objective: To provide a comprehensive overview of psychosocial health of 410 youth with SCI from ages 2 to 18 years. To understand developmental trends, data are presented separately for ages 2-5, 6-12, 13-15, and 16-18 years. Methods: Youth with SCI were recruited from 1 of 3 pediatric specialty hospitals within a single hospital system. Structured surveys assessing community participation, quality of life (QOL), and mental health (including anxiety and depression) were completed by youth with SCI (for ages 6-18) or their primary caregivers (for ages 2-5). Descriptive statistics were used to assess how patients scored on all standardized measures. Results: Of the 410 participants, 56% were male, 64% were Caucasian, 66% had paraplegia, and 55% had complete injuries. On average, the participants were 12 years old (SD 4.87) at interview and 7.26 years old (SD 5.97) at injury. Psychosocial health outcomes were described for each of the 4 age groups: 2-5 years (n = 52), 6-12 (n = 142), 13-15 (n = 82), and 16-18 (n = 134) years. Conclusions: As compared to published norms, this sample of youth with SCI seemed to be experiencing decreased levels of community participation and QOL, but also decreased levels of anxiety and depression. These data provide needed information to clinicians regarding how youth with SCI may typically experience psychosocial health and where their patients fit into that typical experience.

Anderson CJ. Pediatric-onset spinal cord injury: psychosocial issues. SCI Nurs. 2003:20(3):212–214.
,
Pediatric-onset spinal cord injury: psychosocial issues
,
SCI Nurs.
, vol.
20
(pg.
212
-
214
)
Augutis M, Levi R, Asplund K, Berg-Kelly K. Psychosocial aspects of traumatic spinal cord injury with onset during adolescence: a qualitative study. J Spinal Cord Med. 2007;30(suppl 1):S55–S64.
,
Psychosocial aspects of traumatic spinal cord injury with onset during adolescence: a qualitative study
,
J Spinal Cord Med.
, vol.
30
(pg.
S55
-
S64
)
Chavelier Z, Kelly EH, Jones K. An overview of psychosocial adjustment after paediatric spinal cord injury. In: Mulcahey MJ, Betz R, Vogel LC, Zebracki K, eds. Child with a Spinal Cord Injury. 2nd ed. London: MacKeith Press. In press.
,
An overview of psychosocial adjustment after paediatric spinal cord injury. In
,
Child with a Spinal Cord Injury.
Forsyth R, Jarvis S. Participation in childhood. Child: Care Health Dev. 2002;28:277–279.
,
Participation in childhood
,
Child: Care Health Dev.
, vol.
28
(pg.
277
-
279
)
Johnson KA, Klaas SJ. Recreation issues and trends in pediatric spinal cord injury. Top Spinal Cord Inj Rehabil. 1997;3:79–84.
,
Recreation issues and trends in pediatric spinal cord injury
,
Top Spinal Cord Inj Rehabil.
, vol.
3
(pg.
79
-
84
)
Taub DE, Greer KR. Physical activity as a normalizing experience for school-age children with physical disabilities. J Sport Social Issue. 2000;24(4):395–414.
,
Physical activity as a normalizing experience for school-age children with physical disabilities
,
J Sport Social Issue.
, vol.
24
(pg.
395
-
414
)
Brown M, Gordon WA. Impact of impairment on activity patterns of children. Arch Phys Med Rehabil. 1987;68:828–832.
,
Impact of impairment on activity patterns of children
,
Arch Phys Med Rehabil.
, vol.
68
(pg.
828
-
832
)
Ehrmann LC, Aeschleman SR, Svanum S. Parental reports of community activity patterns: a comparison between young children with disabilities and their nondisabled peers. Res Dev Disabil. 1995;16(4):331–343.
,
Parental reports of community activity patterns: a comparison between young children with disabilities and their nondisabled peers
,
Res Dev Disabil.
, vol.
16
(pg.
331
-
343
)
Lepage C, Noreau L, Bernard PM, Fougeyrollas P. Profile of handicap situations in children with cerebral palsy. Scand J Rehabil Med. 1998;30:263–272.
,
Profile of handicap situations in children with cerebral palsy
,
Scand J Rehabil Med.
, vol.
30
(pg.
263
-
272
)
Johnson KA, Klaas SJ, Vogel LC, McDonald C. Leisure characteristics of the pediatric spinal cord injury population. J Spinal Cord Med. 2004;27(suppl 1):S107–S109.
,
Leisure characteristics of the pediatric spinal cord injury population
,
J Spinal Cord Med.
, vol.
27
(pg.
S107
-
S109
)
Klaas SJ, Kelly EH, Gorzkowski J, Homko E, Vogel LC. Assessing patterns of participation and enjoyment in pediatric spinal cord injury. Dev Med Child Neurol. 2010;52:468–474.
,
Assessing patterns of participation and enjoyment in pediatric spinal cord injury
,
Dev Med Child Neurol.
, vol.
52
(pg.
468
-
474
)
Whiteneck GG. Measuring what matters: key rehabilitation outcomes. Arch Phys Med Rehabil. 1994;73:1073–1076.
,
Measuring what matters: key rehabilitation outcomes
,
Arch Phys Med Rehabil.
, vol.
73
(pg.
1073
-
1076
)
Bjornson KF, McLaughlin JF. The measurement of health-related quality of life (HRQL) in children with cerebral palsy. Eur J Neurol. 2001;8(suppl 5):S183–S193.
,
The measurement of health-related quality of life (HRQL) in children with cerebral palsy
,
Eur J Neurol.
, vol.
8
(pg.
S183
-
S193
)
Sawyer MG, Reynolds KE, Couper JJ, et al. A two-year prospective study of the health-related quality of life of children with chronic illness–the parents’ perspective. Qual Life Res. 2005;14(2):395–405.
,
A two-year prospective study of the health-related quality of life of children with chronic illness–the parents’ perspective
,
Qual Life Res.
, vol.
14
(pg.
395
-
405
)
Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:43.
,
Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales
,
Health Qual Life Outcomes.
, vol.
5
(pg.
43
-
43
)
Abresch RT, McDonald DA, Widman LM, McGinnis K, Hickey KJ. Impact of spinal cord dysfunction and obesity on the health-related quality of life of children and adolescents. J Spin Cord Med. 2007;30(suppl 1):S112–S118.
,
Impact of spinal cord dysfunction and obesity on the health-related quality of life of children and adolescents
,
J Spin Cord Med.
, vol.
30
(pg.
S112
-
S118
)
Garma S, Kelly EH, Daharsh E, Vogel LC. Healthrelated quality of life after pediatric spinal cord injury. J Pediatr Psychol. 2011;36(2):226–236.
,
Healthrelated quality of life after pediatric spinal cord injury
,
J Pediatr Psychol.
, vol.
36
(pg.
226
-
236
)
Bombardier CH, Richards JS, Krause JS, Tulsky D, Tate DG. Symptoms of major depression in people with spinal cord injury: implications for screening. Arch Phys Med Rehabil. 2004;85(11):1749–1756.
,
Symptoms of major depression in people with spinal cord injury: implications for screening
,
Arch Phys Med Rehabil.
, vol.
85
(pg.
1749
-
1756
)
Elliott TR, Frank RG. Depression following spinal cord injury. Arch Phys Med Rehabil. 1996;77:816–823.
,
Depression following spinal cord injury
,
Arch Phys Med Rehabil.
, vol.
77
(pg.
816
-
823
)
North T. The psychological effects of spinal cord injury: a review. Spinal Cord. 1999; 37:671–679.
,
The psychological effects of spinal cord injury: a review
,
Spinal Cord.
, vol.
37
(pg.
671
-
679
)
Anderson CJ, Vogel LC, Chlan KM, Betz <gn.RR, McDonald CM. Depression in adults who sustained spinal cord injuries as children or adolescents. J Spinal Cord Med. 2007;30(suppl 1):S76–82.
,
Depression in adults who sustained spinal cord injuries as children or adolescents
,
J Spinal Cord Med.
, vol.
30
(pg.
S76
-
82
)
Anderson CJ, Kelly EH, Klaas SJ, Russell H, Daharsh E, Vogel LC. Anxiety and depression in children and adolescents with spinal cord injuries. Dev Med Child Neurol. 2009;51:826–832.
,
Anxiety and depression in children and adolescents with spinal cord injuries
,
Dev Med Child Neurol.
, vol.
51
(pg.
826
-
832
)
Boyer BA, Knolls ML, Kafkalas CM, Tollen LG, Swartz MS. Prevalence and relationships of posttraumatic stress in families experiencing pediatric spinal cord injury. Rehabil Psychol. 2000;45(4):339–355.
,
Prevalence and relationships of posttraumatic stress in families experiencing pediatric spinal cord injury
,
Rehabil Psychol.
, vol.
45
(pg.
339
-
355
)
Burns S, Biering-Sorenson F, Donovan W, et al. International Standards for Neurological Classification of Spinal Cord Injury, revised 2011. Top Spinal Cord Inj Rehabil. 2012; 18(1):88–99.
,
International Standards for Neurological Classification of Spinal Cord Injury, revised 2011
,
Top Spinal Cord Inj Rehabil.
, vol.
18
(pg.
88
-
99
)
King G, Law M, Petrenchik T, Kertoy M. Assessment of Preschool Children’s Participation (APCP). Hamilton, ON: CanChild Centre for Childhood Disability Research, McMaster University; 2006.
,
Assessment of Preschool Children’s Participation (APCP). Hamilton, ON:
Law M, King G, Petrenchik T, Kertoy M, Anaby D. The assessment of preschool children’s participation: internal consistency and construct validity. Phys Occup Ther Pediatr. 2012;32(3):272–287.
,
The assessment of preschool children’s participation: internal consistency and construct validity
,
Phys Occup Ther Pediatr.
, vol.
32
(pg.
272
-
287
)
King G, Law M, King S, et al. Children’s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment, Inc; 2004.
,
Children’s Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC).
King GA, Law M, King S, et al. Measuring children’s participation in recreation and leisure activities: construct validation of the CAPE and PAC. Child: Care Health Dev. 2007;33(1):28–39.
,
Measuring children’s participation in recreation and leisure activities: construct validation of the CAPE and PAC
,
Child: Care Health Dev.
, vol.
33
(pg.
28
-
39
)
Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory Version 4.0 Generic Core Scales in healthy and patient populations. Med Care. 2001;39(8):800–812.
,
PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory Version 4.0 Generic Core Scales in healthy and patient populations
,
Med Care.
, vol.
39
(pg.
800
-
812
)
Varni JW, Burwinkle TM, Berrin SJ, et al. The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. Dev Med Child Neurol. 2006;48:442–449.
,
The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the generic core scales and cerebral palsy module
,
Dev Med Child Neurol.
, vol.
48
(pg.
442
-
449
)
Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL in pediatric cancer: reliability and validity of the pediatric quality of life inventor generic core scales, multidimensional fatigue scale, and cancer module. Cancer. 2002;94(7):2090–2106.
,
The PedsQL in pediatric cancer: reliability and validity of the pediatric quality of life inventor generic core scales, multidimensional fatigue scale, and cancer module
,
Cancer.
, vol.
94
(pg.
2090
-
2106
)
Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N. The PedsQL in pediatric asthma: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Asthma Module. J Behav Med. 2004;27(3):297–318.
,
The PedsQL in pediatric asthma: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Asthma Module
,
J Behav Med.
, vol.
27
(pg.
297
-
318
)
Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology. Arthritis Rheum. 2002;46(3):714–725.
,
The PedsQL in pediatric rheumatology
,
Arthritis Rheum.
, vol.
46
(pg.
714
-
725
)
Reynolds CR, Kamphaus RW. BASC-2: Behavior Assessment System for Children, Second Edition: Manual. Minneapolis, MN: Pearson; 2004.
,
BASC-2: Behavior Assessment System for Children, Second Edition: Manual.
Reynolds CR, Richmond BO. Revised Children’s Manifest Anxiety Scale (RCMAS): Manual. Los Angeles, CA: Western Psychological Services; 2000.
,
Revised Children’s Manifest Anxiety Scale (RCMAS): Manual.
Kovacs M, MHS Staff. Children’s Depression Inventory (CDI): Technical Manual Update. North Tonawanda, NY: Multi-Health Systems Inc; 2006.
,
Children’s Depression Inventory (CDI): Technical Manual Update.
Gorzkowski JA, Kelly EH, Klaas SJ, Vogel LC. Girls with spinal cord injury: social and job-related participation and psychosocial outcomes. Rehabil Psychol. 2010;55:58–67.
,
Girls with spinal cord injury: social and job-related participation and psychosocial outcomes
,
Rehabil Psychol.
, vol.
55
(pg.
58
-
67
)
Kelly EH, Klaas SJ, Garma S, Russell HF, Vogel LC. Participation and quality of life among youth with spinal cord injury. J Pediatr Rehabil Med. 2012;5(4):315–325.
,
Participation and quality of life among youth with spinal cord injury
,
J Pediatr Rehabil Med.
, vol.
5
(pg.
315
-
325
)
Louv R. Last Child in the Woods: Saving Our Children from Nature-Deficit Disorder. Chapel Hill, NC: Algonquin Books; 2008.
,
Last Child in the Woods: Saving Our Children from Nature-Deficit Disorder.
King G, Petrenchik T, Law M, Hurley P. The enjoyment of formal and informal recreation and leisure activities: a comparison of school-aged children with and without physical disabilities. Int J Disabil Dev Educ. 2009; 56:109–130.
,
The enjoyment of formal and informal recreation and leisure activities: a comparison of school-aged children with and without physical disabilities
,
Int J Disabil Dev Educ.
, vol.
56
(pg.
109
-
130
)
Oladeji O, Johnston TE, Smith BT, Mulcahey MJ, Betz RR, Lauer RT. Quality of life in children with spinal cord injury. Pediatr Phys Ther. 2007;19(4):296–300.
,
Quality of life in children with spinal cord injury
,
Pediatr Phys Ther.
, vol.
19
(pg.
296
-
300
)
Varni JW, Limbers CA, Burwinkle TM. Parent proxy-report of their children’s health-related quality of life: an analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;5:2.
,
Parent proxy-report of their children’s health-related quality of life: an analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales
,
Health Qual Life Outcomes.
, vol.
5
(pg.
2
-
2
)
This content is only available as a PDF.