Predictors of participation and quality of life following major traumatic injuries in childhood: a systematic review

References

• Kyu HH, Stein CE, Pinto CB, et al. Causes of death among children aged 5–14 years in the WHO European Region: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Child Adolesc Health. 2018;2:321–337.
   PubMedGoogle Scholar
• Cunningham RM, Walton MA, Carter PM. The major causes of death in children and adolescents in the United States. N Engl J Med. 2018;379:2468–2475.
   PubMed Web of Science ®Google Scholar
• Kyu HH, Pinho C, Wagner JA, et al.; Global Burden of Disease Pediatrics Collaboration. Global and national burden of diseases and injuries among children and adolescents between 1990 and 2013: findings from the global burden of disease 2013 study. JAMA Pediatr. 2016;170:267–287.
   PubMed Web of Science ®Google Scholar
• Janssens L, Gorter JW, Ketelaar M, et al. Long-term health condition in major pediatric trauma: a pilot study. J Pediatr Surg. 2009;44:1591–1600.
   PubMed Web of Science ®Google Scholar
• Rivara FP, Oldham KT. Pediatric trauma care: defining a research agenda. J Trauma Acute Care Surg. 2007;63:S52–S53.
   Google Scholar
• Winthrop AL. Health-related quality of life after pediatric trauma. Curr Opin Pediatr. 2010;22:346–351.
   PubMed Web of Science ®Google Scholar
• Winthrop AL, Brasel KJ, Stahovic L, et al. Quality of life and functional outcome after pediatric trauma. J Trauma Acute Care Surg. 2005;58:468–474.
   Web of Science ®Google Scholar
• Michielsen A, Van Wijk I, Ketelaar M. Participation and quality of life in children and adolescents with congenital limb deficiencies: a narrative review. Prosthet Orthot Int. 2010;34:351–361.
   PubMed Web of Science ®Google Scholar
• Resch C, Van Kruijsbergen M, Ketelaar M, et al. Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties. Dev Med Child Neurol. 2020;62:434–444.
   PubMed Web of Science ®Google Scholar
• Organization WH. International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). Geneva: World Health Organization; 2007.
   Google Scholar
• Law M, King G, King S, et al. Patterns of participation in recreational and leisure activities among children with complex physical disabilities. Dev Med Child Neurol. 2006;48:337–342.
   PubMed Web of Science ®Google Scholar
• King G, Law M, King S, Rosenbaum P, et al. A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Phys Occup Ther Pediatr. 2003;23:63–90.
   PubMedGoogle Scholar
• de Kloet AJ, Gijzen R, Braga LW, et al. Determinants of participation of youth with acquired brain injury: a systematic review. Brain Inj. 2015;29:1135–1145.
   PubMed Web of Science ®Google Scholar
• van Tol E, Gorter JW, DeMatteo C, et al. Participation outcomes for children with acquired brain injury: a narrative review. Brain Inj. 2011;25:1279–1287.
   PubMed Web of Science ®Google Scholar
• Dahan-Oliel N, Shikako-Thomas K, Majnemer A. Quality of life and leisure participation in children with neurodevelopmental disabilities: a thematic analysis of the literature. Qual Life Res. 2012;21:427–439.
   PubMed Web of Science ®Google Scholar
• Braccialli LMP, Silva MZ, Braccialli AC, et al. Impact of school participation on quality of life of Brazilian children with cerebral palsy. Int J Disabil Hum Dev. 2016;15:23–27.
   Google Scholar
• Brown M, Gordon WA. Impact of impairment on activity patterns of children. Arch Phys Med Rehabil. 1987;68:828–832.
   PubMed Web of Science ®Google Scholar
• Law M. Participation in the occupations of everyday life. Am J Occup Ther. 2002;56:640–649.
   PubMed Web of Science ®Google Scholar
• Law M. Enhancing participation. Phys Occup Ther Pediatr. 2002;22:1–3.
   PubMedGoogle Scholar
• Carpenter C, Forwell SJ, Jongbloed LE, et al. Community participation after spinal cord injury. Arch Phys Med Rehabil. 2007;88:427–433.
   PubMed Web of Science ®Google Scholar
• Forsyth R, Jarvis S. Participation in childhood. Child Care Health Dev. 2002;28:277–279.
   PubMed Web of Science ®Google Scholar
• Di Battista A, Soo C, Catroppa C, et al. Quality of life in children and adolescents post-TBI: a systematic review and meta-analysis. J Neurotrauma. 2012;29:1717–1727.
   PubMed Web of Science ®Google Scholar
• Ingerski LM, Modi AC, Hood KK, et al. Health-related quality of life across pediatric chronic conditions. J Pediatr. 2010;156:639–644.
   PubMed Web of Science ®Google Scholar
• O'Keeffe F, Ganesan V, King J, et al. Quality-of-life and psychosocial outcome following childhood arterial ischaemic stroke. Brain Inj. 2012;26:1072–1083.
   PubMed Web of Science ®Google Scholar
• Speechley KN, Barrera M, Shaw AK, et al. Health-related quality of life among child and adolescent survivors of childhood cancer. J Clin Oncol. 2006;24:2536–2543.
   PubMed Web of Science ®Google Scholar
• Vargus-Adams J. Health-related quality of life in childhood cerebral palsy. Arch Phys Med Rehabil. 2005;86:940–945.
   PubMed Web of Science ®Google Scholar
• Chevignard MP, Brooks N, Truelle J. Community integration following severe childhood traumatic brain injury. Curr Opin Neurol. 2010;23:695–700.
   PubMed Web of Science ®Google Scholar
• Martin-Herz SP, Zatzick DF, McMahon RJ. Health-related quality of life in children and adolescents following traumatic injury: a review. Clin Child Fam Psychol Rev. 2012;15:192–214.
   PubMed Web of Science ®Google Scholar
• Ryder C, Mackean T, Hunter K, et al. Equity in functional and health related quality of life outcomes following injury in children – a systematic review. Critical Public Health. 2020;30:352–366.
   Web of Science ®Google Scholar
• Moher D, Liberati A, Tetzlaff J, et al.; PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6:e1000097.
   PubMed Web of Science ®Google Scholar
• Hayden JA, van der Windt DA, Cartwright JL, et al. Assessing bias in studies of prognostic factors. Ann Intern Med. 2013;158:280–286.
   PubMed Web of Science ®Google Scholar
• Grooten WJA, Tseli E, Äng BO, et al. Elaborating on the assessment of the risk of bias in prognostic studies in pain rehabilitation using QUIPS-aspects of interrater agreement. Diagn Progn Res. 2019;3:5.
   PubMedGoogle Scholar
• Lumba-Brown A, Yeates KO, Sarmiento K, et al. Diagnosis and Management of Mild Traumatic Brain Injury in Children: A Systematic Review. JAMA Pediatr. 2018;172:e182847.
   PubMed Web of Science ®Google Scholar
• Anderson V, Brown S, Newitt H. What contributes to quality of life in adult survivors of childhood traumatic brain injury? J Neurotrauma. 2010;27:863–870.
   PubMed Web of Science ®Google Scholar
• Anderson V, Brown S, Newitt H, et al. Educational, vocational, psychosocial, and quality-of-life outcomes for adult survivors of childhood traumatic brain injury. J Head Trauma Rehabil. 2009;24:303–312.
   PubMed Web of Science ®Google Scholar
• Anderson V, Brown S, Newitt H, et al. Long-term outcome from childhood traumatic brain injury: intellectual ability, personality, and quality of life. Neuropsychology. 2011;25:176–184.
   PubMed Web of Science ®Google Scholar
• Câmara-Costa H, Francillette L, Opatowski M, et al. Participation seven years after severe childhood traumatic brain injury. Disabil Rehabil. 2020;42:2402–2411.
   PubMed Web of Science ®Google Scholar
• Câmara-Costa H, Opatowski M, Francillette L, et al. Self- and parent-reported quality of life 7 years after severe childhood traumatic brain injury in the Traumatisme Grave de l'Enfant cohort: associations with objective and subjective factors and outcomes. Qual Life Res. 2020;29:515–528.
   PubMed Web of Science ®Google Scholar
• Daskas N, Sharples P, Likeman M, et al. Growth hormone secretion, fatigue and quality of life after childhood traumatic brain injury. Eur J Endocrinol. 2019;181:331–338.
   PubMed Web of Science ®Google Scholar
• De Netto RK, McKinlay A. Impact of childhood traumatic brain injury on educational outcomes and adult standard of living. Disabil Rehabil. 2020;42:2444–2450.
   PubMed Web of Science ®Google Scholar
• Di Battista A, Godfrey C, Soo C, et al. Depression and health related quality of life in adolescent survivors of a traumatic brain injury: a pilot study. PLoS One. 2014;9:e101842.
   PubMed Web of Science ®Google Scholar
• Green L, Godfrey C, Soo C, et al. A preliminary investigation into psychosocial outcome and quality-of-life in adolescents following childhood traumatic brain injury. Brain Inj. 2013;27:872–877.
   PubMed Web of Science ®Google Scholar
• Nybo T, Sainio M, Muller K. Stability of vocational outcome in adulthood after moderate to severe preschool brain injury. J Int Neuropsychol Soc. 2004;10:719–723.
   PubMed Web of Science ®Google Scholar
• Nybo T, Sainio M, Muller K. Middle age cognition and vocational outcome of childhood brain injury. Acta Neurol Scand. 2005;112:338–342.
   PubMed Web of Science ®Google Scholar
• Ryan NP, Noone K, Godfrey C, et al. Young adults' perspectives on health-related quality of life after paediatric traumatic brain injury: a prospective cohort study . Ann Phys Rehabil Med. 2019;62:342–350.
   PubMed Web of Science ®Google Scholar
• Souza LM, Braga LW, Filho GN, et al. Quality-of-life: child and parent perspectives following severe traumatic brain injury. Dev Neurorehabil. 2007;10:35–47.
   PubMedGoogle Scholar
• Stancin T, Drotar D, Taylor HG, et al. Health-related quality of life of children and adolescents after traumatic brain injury. Pediatrics. 2002;109:E34.
   PubMed Web of Science ®Google Scholar
• Todis B, Glang A, Bullis M, et al. Longitudinal investigation of the post-high school transition experiences of adolescents with traumatic brain injury. J Head Trauma Rehabil. 2011;26:138–149.
   PubMed Web of Science ®Google Scholar
• Treble-Barna A, Schultz H, Minich N, et al. Long-term classroom functioning and its association with neuropsychological and academic performance following traumatic brain injury during early childhood. Neuropsychology. 2017;31:486–498.
   PubMed Web of Science ®Google Scholar
• Wamstad JB, Norwood KW, Rogol AD, et al. Neuropsychological recovery and quality-of-life in children and adolescents with growth hormone deficiency following TBI: a preliminary study. Brain Injury. 2013;27:200–208.
   PubMed Web of Science ®Google Scholar
• Wehman P, Chen CC, West M, et al. Transition planning for youth with traumatic brain injury: findings from the National Longitudinal Transition Survey-2. Neurorehabilitation. 2014;34:365–372.
   PubMed Web of Science ®Google Scholar
• Wells R, Minnes P, Phillips M. Predicting social and functional outcomes for individuals sustaining paediatric traumatic brain injury. Dev Neurorehabil. 2009;12:12–23.
   PubMed Web of Science ®Google Scholar
• Anderson CJ, Krajci KA, Vogel LC. Community integration among adults with spinal cord injuries sustained as children or adolescents. Dev Med Child Neurol. 2003;45:129–134.
   PubMed Web of Science ®Google Scholar
• Anderson CJ, Vogel LC. Employment outcomes of adults who sustained spinal cord injuries as children or adolescents. Arch Phys Med Rehabil. 2002;83:791–801.
   PubMed Web of Science ®Google Scholar
• Anderson CJ, Vogel LC. Domain-specific satisfaction in adults with pediatric-onset spinal cord injuries. Spinal Cord. 2003;41:684–691.
   PubMed Web of Science ®Google Scholar
• Anderson CJ, Vogel LC, Betz RR, et al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. J Spinal Cord Med. 2004;27:S98–S106.
   PubMed Web of Science ®Google Scholar
• Anderson CJ, Vogel LC, Chlan KM, et al. Coping with spinal cord injury: strategies used by adults who sustained their injuries as children or adolescents. J Spinal Cord Med. 2008;31:290–296.
   PubMed Web of Science ®Google Scholar
• Anderson CJ, Vogel LC, Willis KM, et al. Stability of transition to adulthood among individuals with pediatric-onset spinal cord injuries. J Spinal Cord Med. 2006;29:46–56.
   PubMed Web of Science ®Google Scholar
• Chen Y, Anderson CJ, Vogel LC, et al. Change in life satisfaction of adults with pediatric-onset spinal cord injury. Arch Phys Med Rehabil. 2008;89:2285–2292.
   PubMed Web of Science ®Google Scholar
• Hwang M, Zebracki K, Chlan KM, et al. Longitudinal employment outcomes in adults with pediatric-onset spinal cord injury. Spinal Cord. 2014;52:477–482.
   PubMed Web of Science ®Google Scholar
• Hwang M, Zebracki K, Vogel LC. Long-term outcomes and longitudinal changes of neurogenic bowel management in adults with pediatric-onset spinal cord injury. Arch Phys Med Rehabil. 2017;98:241–248.
   PubMed Web of Science ®Google Scholar
• January AM, Kelly EH, Russell HF, et al. Patterns of coping among caregivers of children with spinal cord injury: associations with parent and child well-being. Fam Syst Health. 2019;37:150–161.
   PubMed Web of Science ®Google Scholar
• Vogel LC, Krajci KA, Anderson CJ. Adults with pediatric-onset spinal cord injuries: part 3: impact of medical complications. J Spinal Cord Med. 2002;25:297–305.
   PubMedGoogle Scholar
• Bedell G. Research update: The child and adolescent scale of participation. Brain Inj Prof. 2006;3:14.
   Google Scholar
• Tate R, Hodgkinson A, Veerabangsa A, et al. Measuring psychosocial recovery after traumatic brain injury: psychometric properties of a new scale. J Head Trauma Rehabil. 1999; 14:543–557.
   PubMed Web of Science ®Google Scholar
• Greenwood CR, Carta JJ, Kamps D, et al. Development and validation of standard classroom observation systems for school practitioners: ecobehavioral assessment systems software (EBASS). Except Child. 1994;61:197–210.
   Web of Science ®Google Scholar
• Whiteneck GG, Brooks Ca Charlifue S, Gerhart Ka Mellick D, et al. Craig handicap assessment and reporting technique. Englewood (CO): Craig Hospital; 1988/1992.
   Google Scholar
• Diener ED, Emmons RA, Larsen RJ, et al. The satisfaction with life scale. J Pers Assess. 1985;49:71–75.
   PubMed Web of Science ®Google Scholar
• Langdgraf JM, Abetz L, Ware JE. The CHQ User’s Manual. 1st ed. Boston (MA): The Health Institute, New England Medical Center; 1996.
   Google Scholar
• Rabin R, Charro FD. EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001;33:337–343.
   PubMed Web of Science ®Google Scholar
• McKenna SP, Doward LC, Alonso J, et al. The QoL-AGHDA: an instrument for the assessment of quality of life in adults with growth hormone deficiency. Qual Life Res. 1999;8:373–383.
   PubMed Web of Science ®Google Scholar
• Group W. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med. 1998;28:551–558.
   PubMed Web of Science ®Google Scholar
• Tate RL, Simpson GK, Soo CA, et al. Participation after acquired brain injury: clinical and psychometric considerations of the Sydney Psychosocial Reintegration Scale (SPRS). J Rehabil Med. 2011;43:609–618.
   PubMed Web of Science ®Google Scholar
• Bosacki S, Dane A, Marini Z, YLC‐CURA. Peer relationships and internalizing problems in adolescents: Mediating role of self‐esteem. Emot Behav Diffic. 2007;12:261–282.
   Google Scholar
• Steger MF, Kashdan TB. Depression and everyday social activity, belonging, and well-being. J Couns Psychol. 2009;56:289–300.
   PubMed Web of Science ®Google Scholar
• Yeates KO, Taylor HG, Walz NC, et al. The family environment as a moderator of psychosocial outcomes following traumatic brain injury in young children. Neuropsychology. 2010;24:345–356.
   PubMed Web of Science ®Google Scholar
• Ryan NP, van Bijnen L, Catroppa C, et al. Longitudinal outcome and recovery of social problems after pediatric traumatic brain injury (TBI): contribution of brain insult and family environment. Int J Dev Neurosci. 2016;49:23–30.
   PubMed Web of Science ®Google Scholar
• Shields N, Synnot AJ, Barr M. Perceived barriers and facilitators to physical activity for children with disability: a systematic review. Br J Sports Med. 2012;46:989–997.
   PubMed Web of Science ®Google Scholar
• Bult MK, Verschuren O, Jongmans MJ, et al. What influences participation in leisure activities of children and youth with physical disabilities? A systematic review. Res Dev Disabil. 2011;32:1521–1529.
   PubMed Web of Science ®Google Scholar
• Martin Ginis KA, Ma JK, Latimer-Cheung AE, et al. A systematic review of review articles addressing factors related to physical activity participation among children and adults with physical disabilities. Health Psychol Rev. 2016;10:478–494.
   PubMed Web of Science ®Google Scholar
• Shikako-Thomas K, Majnemer A, Law M, et al. Determinants of participation in leisure activities in children and youth with cerebral palsy: systematic review. Phys Occup Ther Pediatr. 2008;28:155–169.
   PubMedGoogle Scholar
• Livingston MH, Rosenbaum PL, Russell DJ, et al. Quality of life among adolescents with cerebral palsy: what does the literature tell us? Dev Med Child Neurol. 2007;49:225–231.
   PubMed Web of Science ®Google Scholar