Fatigue, Participation and Quality of Life in Adolescents and Young Adults with Acquired Brain Injury in an Outpatient Rehabilitation Cohort

References

• Greenwald BD, Burnett DM, Miller MA. Congenital and acquired brain injury. 1. Brain injury: epidemiology and pathophysiology. Arch Phys Med Rehabil. 2003;84:S3–S7. doi:10.1053/ampr.2003.50052.
   PubMed Web of Science ®Google Scholar
• Catroppa A, Anderson VA, Morse SA, Haritou D, Rosenfeld JV. Outcome and predictors of functional recovery 5 years following pediatric traumatic brain injury. J Pediatr Psychol. 2008;33:707–18. doi:10.1093/jpepsy/jsn006.
   PubMed Web of Science ®Google Scholar
• Di Battista A, Soo C, Catroppa C, Anderson V. Quality of life in children and adolescents post-TBI: a systematic review and meta-analysis. J Neurotrauma. 2012;29:1717–27. doi:10.1089/neu.2011.2157.
   PubMed Web of Science ®Google Scholar
• Green L, Godfrey C, Soo S, Anderson V, Catroppa C. A preliminary investigation into psychosocial outcome and quality-of-life in adolescents following childhood traumatic brain injury. Brain Inj. 2013;7–8:872–77. doi:10.3109/02699052.2013.775506.
   Web of Science ®Google Scholar
• Anderson V, Brown S, Newitt H, Hoile H. Educational, vocational, psychosocial, and quality-of-life outcomes for adult survivors of childhood traumatic brain injury. J Head Trauma Rehabil. 2009 Sep–Oct;24(5):303–12. doi:10.1097/HTR.0b013e3181ada830.
   PubMed Web of Science ®Google Scholar
• Neuner B, von Mackensen S, Krümpel A, Manner D, Friefeld S, Nixdorf S, Frühwald M, deVeber G, Nowak-Göttl U. Health-related quality of life in children and adolescents with stroke, self-reports, and parent/proxies reports: cross-sectional investigation. Ann Neurol. 2011;70:70–78. doi:10.1002/ana.22381.
   PubMed Web of Science ®Google Scholar
• Kristiansen I, Strinnholm M, Strömberg B, Frisk P. Clinical characteristics, long-term complications and health-related quality of life (HRQoL) in children and young adults treated for low-grade astrocytoma in the posterior fossa in childhood. J Neuro-Oncol. 2019 Mar;142(1):203–10. doi:10.1007/s11060-018-03085-9.
   PubMed Web of Science ®Google Scholar
• Gagner C, Landry-Roy C, Lainé F, Beauchamp MH. Sleep-wake disturbances and fatigue after pediatric traumatic brain injury: a systematic review of the literature. J Neurotrauma. 2015 Oct 15;32(20):1539–52. doi:10.1089/neu.2014.3753.
   PubMed Web of Science ®Google Scholar
• Crichton A, Anderson V, Oakley E, Greenham M, Hearps S, Delzoppo C, Beauchamp MH, Hutchison JS, Guerguerian AM, Boutis K, et al.; Group Biomarker & QoL in Children with TBI. Fatigue following traumatic brain injury in children and adolescents: a longitudinal follow-up 6 to 12 months after injury. J Head Trauma Rehabil. 2018 May/Jun;33(3):200–09. doi:10.1097/HTR.0000000000000330.
   PubMed Web of Science ®Google Scholar
• Meeske K, Katz ER, Palmer SN, Burwinkle T, Varni JVV. Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer. 2004 Nov 1;101(9):2116–25. doi:10.1002/cncr.20609.
   PubMed Web of Science ®Google Scholar
• Goeggel Simonetti B, Ritter B, Gautschi M, Wehrli E, Boltshauser E, Schmitt-Mechelke T, Weber P, Weissert M, El-Koussy M, Steinlin M. Basilar artery stroke in childhood. Dev Med Child Neurol. 2013 Jan;55(1):65–70. doi:10.1111/dmcn.2012.55.issue-1.
   PubMed Web of Science ®Google Scholar
• Aaro Jonsson CC, Emanuelson IM, Smedler AC. Variability in quality of life 13 years after traumatic brain injury in childhood. Int J Rehabil Res. 2014 Dec;37(4):317–22. doi:10.1097/MRR.0000000000000073.
   PubMed Web of Science ®Google Scholar
• Wilkinson J, Marmol NL, Godfrey C, Wills H, van Eijndhoven Q, Botchway EN, Sood N, Anderson V, Catroppa C. Fatigue following paediatric acquired brain injury and its impact on functional outcomes: a systematic review. Neuropsychol Rev. 2018;28(1):73–87. doi:10.1007/s11065-018-9370-z.
   PubMed Web of Science ®Google Scholar
• Greenham M, Gordon AL, Cooper A, Ditchfield M, Coleman L, Hunt RW, Mackay MT, Monagle MP, Anderson V. Social functioning following pediatric stroke: contribution of neurobehavioral impairment. Dev Neuropsychol. 2018;43(4):312–28. doi:10.1080/87565641.2018.1440557.
   PubMed Web of Science ®Google Scholar
• MacAllister WS, Christodoulou C, Troxell R, Milazzo M, Block P, Preston TE, Bender HA, Belman A, Krupp LB. Fatigue and quality of life in pediatric multiple sclerosis. Mult Scler. 2009 Dec;15(12):1502–08. doi:10.1177/1352458509345902.
   PubMed Web of Science ®Google Scholar
• Berrin SJ, Malcarne VL, Varni JW, Burwinkle TM, Sherman SA, Artavia K, Chambers HG. Pain, fatigue, and school functioning in children with cerebral palsy: a path-analytic model. J Pediatr Psychol. 2007 Apr;32(3):330–37. doi:10.1093/jpepsy/jsl017.
   PubMed Web of Science ®Google Scholar
• Gedaly-Duff V, Lee KA, Nail L, Nicholson HS, Johnson KP. Pain, sleep disturbance, and fatigue in children with leukemia and their parents: a pilot study. Oncol Nurs Forum. 2006 May 3;33(3):641–46. doi:10.1188/06.ONF.641-646.
   PubMed Web of Science ®Google Scholar
• Gordijn MS, van Litsenburg RR, Gemke RJ, Huisman J, Bierings MB, Hoogerbrugge PM, Kaspers GJ. ep, fatigue, depression, and quality of life in survivors of childhood acute lymphoblastic leukemia. Pediatr Blood Cancer. 2013 Mar;60(3):479–85. doi:10.1002/pbc.24261.
   PubMed Web of Science ®Google Scholar
• Gold JI, Mahrer NE, Yee J, Palermo TM. Pain, fatigue, and health-related quality of life in children and adolescents with chronic pain. Clin J Pain. 2009 Jun;25(5):407–12. doi:10.1097/AJP.0b013e318192bfb1.
   PubMed Web of Science ®Google Scholar
• van de Port IG, Kwakkel G, Schepers VP, Heinemans CT, Lindeman E. Is fatigue an independent factor associated with activities of daily living, instrumental activities of daily living and health-related quality of life in chronic stroke? Cerebrovasc Dis. 2007;23(1):40–45. doi:10.1159/000095757.
   PubMed Web of Science ®Google Scholar
• Ezekiel L, Collett J, Mayo NE, Pang L, Field L, Dawes H. 2018. Factors associated with participation in life situations for adults with stroke: a systematic review. Arch Phys Med Rehabil. 2019 May;100(5):945-955.
   Google Scholar
• Cantor JB, Ashman T, Gordon W, Ginsberg A, Engmann C, Egan M, Spielman L, Dijkers M, Flanagan S. Fatigue after traumatic brain injury and its impact on participation and quality of life. J Head Trauma Rehabil. 2008;23(1):41–51. doi:10.1097/01.HTR.0000308720.70288.af.
   PubMed Web of Science ®Google Scholar
• Imms C, Adair B, Keen D, Ullenhag A, Rosenbaum P, Granlund M. ‘Participation’: a systematic review of language, definitions, and constructs used in intervention research with children with disabilities. Dev Med Child Neurol. 2016 Jan;58(1):29–38. doi:10.1111/dmcn.12932.
   PubMed Web of Science ®Google Scholar
• Scales PC, Benson PL, Oesterle S, Hill KG, Hawkins JD, Pashak TJ. The dimensions of successful young adult development: a conceptual and measurement framework. Appl Dev Sci. 2016;20(3):150–74. doi:10.1080/10888691.2015.1082429.
   PubMed Web of Science ®Google Scholar
• Lambregts SAM, Smetsers JEM, Verhoeven IMAJ, de Kloet AJ, van de Port IGL, Ribbers GM, Catsman-Berrevoets CE. Cognitive function and participation in children and youth with mild traumatic brain injury two years after injury. Brain Inj. 2018;32(2):230–41. doi:10.1080/02699052.2017.1406990.
   PubMed Web of Science ®Google Scholar
• de Kloet AJ, Gijzen R, Braga LW, Meesters JJL, Schoones JW, Vliet Vlieland TPM. Determinants of participation of youth with acquired brain injury: a systematic review. Brain Inj. 2015 Sep;29(10):1135–45. doi:10.3109/02699052.2015.1034178.
   PubMed Web of Science ®Google Scholar
• Anaby D, Law M, Hanna S, Dematteo C. Predictors of change in participation rates following acquired brain injury: results of a longitudinal study. Dev Med Child Neurol. 2012;54(4):339–46. doi:10.1111/j.1469-8749.2011.04204.x.
   PubMed Web of Science ®Google Scholar
• Calman K. Definitions and dimensions of quality of life, in the quality of life of cancer patients. New York (NY): Raven; 1987. 81–87.
   Google Scholar
• Stancin T, Drotar D, Taylor HG, Yeates KO, Wade SL, Minich NM. Health-related quality of life of children and adolescents after traumatic brain injury. Pediatrics. 2002 Feb;109(2):E34. doi:10.1542/peds.109.2.e34.
   PubMed Web of Science ®Google Scholar
• Limond J, Dorris L, McMillan TM. Quality of life in children with acquired brain injury: parent perspectives 1-5 years after injury. Brain Inj. 2009 Jul;23(7):617–22. doi:10.1080/02699050902997870.
   PubMed Web of Science ®Google Scholar
• Polinder S, Haagsma JA, van Klaveren D, Steyerberg EW, van Beeck EF. Health-related quality of life after TBI: a systematic review of study design, instruments, measurement properties, and outcome. Popul Health Metr. 2015 Feb;17(13):4. doi:10.1186/s12963-015-0037-1.
   Google Scholar
• Gupta P, Jalali R. Long-term survivors of childhood brain tumors: impact on general health and quality of life. Curr Neurol Neurosci Rep. 2017 Nov 8;17(12):99. doi:10.1007/s11910-017-0808-0.
   PubMed Web of Science ®Google Scholar
• Teasdale G, Jennett B. Assessment of coma and impaired consciousness: a practical scale. Lancet. 1974;13:81–84. doi:10.1016/S0140-6736(74)91639-0.
   Google Scholar
• Varni JW, Limbers CA. The PedsQL multidimensional fatigue scale in young adults: feasibility, reliability and validity in a university student population. Qual Life Res. 2008 Feb;17(1):105–14. doi:10.1007/s11136-007-9282-5.
   PubMed Web of Science ®Google Scholar
• Gordijn M, Cremers EM, Kaspers GJ, Gemke RJ. Fatigue in children: reliability and validity of the Dutch PedsQL™ multidimensional fatigue scale. Qual Life Res. 2011 Sep;20(7):1103–08. doi:10.1007/s11136-010-9836-9.
   PubMed Web of Science ®Google Scholar
• Haverman L, Limperg PF, van Oers HA, van Rossum MA, Maurice-Stam H, Grootenhuis MA. Psychometric properties and Dutch norm data of the PedsQL multidimensional fatigue scale for young adults. Qual Life Res. 2014 Dec;23(10):2841–47. doi:10.1007/s11136-014-0734-4.
   PubMed Web of Science ®Google Scholar
• Panepinto JA, Torres S, Bendo CB, McCavit TL, Dinu B, Sherman-Bien S, Bemrich-Stolz C, Varni JW. PedsQL™ multidimensional fatigue scale in sickle cell disease: feasibility, reliability, and validity. Pediatr Blood Cancer. 2014 Jan;61(1):171–77. doi:10.1002/pbc.v61.1.
   PubMed Web of Science ®Google Scholar
• Bedell GM. Further validation of the Child and Adolescent Scale of Participation (CASP). Dev Neurorehabil. 2009;12(5):342–51. doi:10.3109/17518420903087277.
   PubMed Web of Science ®Google Scholar
• de Kloet AJ, Berger MA, Bedell GM, Catsman-Berrevoets CE, van Markus-doornbosch F, Vliet Vlieland TP. Psychometric evaluation of the Dutch language version of the child and family follow-up survey. Dev Neurorehabil. 2015;18(6):357–64. doi:10.3109/17518423.2013.850749.
   PubMed Web of Science ®Google Scholar
• McDougall J, Bedell G, Wright V. The youth report version of the Child and Adolescent Scale of Participation (CASP): assessment of psychometric properties and comparison with parent report. Child Care Health Dev. 2013 Jul;39(4):512–22. doi:10.1111/cch.12050.
   PubMed Web of Science ®Google Scholar
• Limperg PF, Haverman L, van Oers HA, van Rossum MA, Maurice-Stam H, Grootenhuis MA. Health related quality of life in Dutch young adults: psychometric properties of the PedsQL generic core scales young adult version. Health Qual Life Outcomes. 2014 Jan;18(12):9. doi:10.1186/1477-7525-12-9.
   Google Scholar
• 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 Jan 3;5:2. doi:10.1186/1477-7525-5-2.
   PubMed Web of Science ®Google Scholar
• Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003 Nov–Dec;3(6):329–41. doi:10.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2.
   PubMedGoogle Scholar
• Engelen V, Haentjens MM, Detmar SB, Koopman HM, Grootenhuis MA. Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands. BMC Pediatr. 2009 Nov;3(9):68. doi:10.1186/1471-2431-9-68.
   Google Scholar
• McCarthy ML, MacKenzie EJ, Durbin DR, Aitken M, Jaffe KM, Paidas CN, Slomine BS, Dorsch AM, Berk RA, Christensen JR, et al.; Group CHAT Study. The pediatric quality of life inventory: an evaluation of its reliability and validity for children with traumatic brain injury. Arch Phys Med Rehabil. 2005 Oct;86(10):1901–09. doi:10.1016/j.apmr.2005.03.026.
   PubMed Web of Science ®Google Scholar
• Bartko JJ. The intraclass correlation coefficients as a measure of reliability. Psychol Rep. 1966;19(1):3–11. doi:10.2466/pr0.1966.19.1.3.
   PubMed Web of Science ®Google Scholar
• SPSS. Statistics for windows, version 22.0. Armonk (NY): IBM Corp; 2016.
   Google Scholar
• de Kloet AJ, Hilberink SR, Roebroeck ME, Catsman-Berrevoets CE, Peeters EAJ, Lambregts SAM, van Markus-doornbosch F, Vliet Vlieland TPM. Youth with acquired brain injury in the Netherlands: a multicenter study. Brain Inj. 2013;27:843–49. doi:10.3109/02699052.2013.775496.
   PubMed Web of Science ®Google Scholar
• Barlow KM. Postconcussion syndrome: a review. J Child Neurol. 2014 Jan;31(1):57–67. doi:10.1177/0883073814543305.
   PubMed Web of Science ®Google Scholar
• Barlow KM, Crawford S, Stevenson A, Sandhu SS, Belanger F, Dewey D. Epidemiology of postconcussion syndrome in pediatric mild traumatic brain injury. Pediatrics. 2010;126:e374–e381. doi:10.1136/bmj.4.5994.440.
   PubMed Web of Science ®Google Scholar
• Crichton AJ, Babl F, Oakley E, Greenham M, Hearps S, Delzoppo C, Hutchison J, Beauchamp M, Anderson V. Prediction of multidimensional fatigue after childhood brain injury. J Head Trauma Rehabil. 2017 Mar/Apr;32(2):107–16. doi:10.1097/HTR.0000000000000248.
   PubMed Web of Science ®Google Scholar
• Yeh CH, Chiang YC, Lin L, Yang CP, Chien LC, Weaver MA, Chuang HL. Clinical factors associated with fatigue over time in paediatric oncology patients receiving chemotherapy. Br J Cancer. 2008 Jul 8;99(1):23–29. doi:10.1038/sj.bjc.6604434.
   PubMed Web of Science ®Google Scholar
• van Tol E, Gorter JW, DeMatteo C, Meester-Delver A. Participation outcomes for children with acquired brain injury: a narrative review. Brain Inj. 2011;25(13–14):1279–87. doi:10.3109/02699052.2011.613089.
   PubMed Web of Science ®Google Scholar
• Theadom A, Starkey N, Barker-Collo S, Jones K, Ameratunga S, Feigin V; Group BIONIC4you Research. Population-based cohort study of the impacts of mild traumatic brain injury in adults four years post-injury. PLoS One. 2018;13(1):e0191655. doi:10.1371/journal.pone.0191655.
   PubMed Web of Science ®Google Scholar
• Engel-Yeger B, Tse T, Josman BC, Carey LM. Scoping review: the trajectory of recovery of participation outcomes following stroke. Behav Neurol. 2018 Sep 9;2018:5472018.
   PubMed Web of Science ®Google Scholar
• Rivara FP, Vavilala MS, Durbin D, Temkin N, Wang J, O’Connor SS, Koepsell TD, Dorsch A, Jaffe KM. Persistence of disability 24 to 36 months after pediatric traumatic brain injury: a cohort study. J Neurotrauma. 2012;29(15):2499–504. doi:10.1089/neu.2012.2434.
   PubMed Web of Science ®Google Scholar
• Upton P, Lawford J, Eiser C. Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res. 2008 Aug;17(6):895–913. doi:10.1007/s11136-008-9350-5.
   PubMed Web of Science ®Google Scholar
• Eiser C, Varni JW. Health-related quality of life and symptom reporting: similarities and differences between children and their parents. Eur J Pediatr. 2013 Oct;172(10):1299–304. doi:10.1007/s00431-013-2049-9.
   PubMed Web of Science ®Google Scholar
• Knight SJ, Politis J, Garnham C, Scheinberg A, Tollit MA. School functioning in adolescents with chronic fatigue syndrome. Front Pediatr. 2018 Oct;16(6):302. doi:10.3389/fped.2018.00302.
   Google Scholar
• Cavallo S, April KT, Grandpierre V, Majnemer A, Feldman DE. Leisure in children and adolescents with juvenile idiopathic arthritis: a systematic review. PLoS One. 2014 Oct 20;9(10):e104642. doi:10.1371/journal.pone.0104642.
   PubMed Web of Science ®Google Scholar
• Lequerica AH, Botticello AL, Lengenfelder J, Chiaravalloti N, Bushnik T, Dijkers MP, Hammond FM, Kolakowsky-Hayner SA, Rosenthal J. Factors associated with remission of post-traumatic brain injury fatigue in the years following traumatic brain injury (TBI): a TBI model systems module study. Neuropsychol Rehabil. 2017;27(7):1019–30. doi:10.1080/09602011.2016.1231120.
   PubMed Web of Science ®Google Scholar
• Eddy L, Cruz M. The relationship between fatigue and quality of life in children with chronic health problems: a systematic review. J Spec Pediatr Nurs. 2007 Apr;12(2):105–14. doi:10.1111/jspn.2007.12.issue-2.
   PubMed Web of Science ®Google Scholar
• Botchway EN, Godfrey C, Anderson V, Catroppa C. A systematic review of sleep-wake disturbances in childhood traumatic brain injury: relationship with fatigue, depression and quality of life. J Head Trauma Rehabil. 2019 Jul/Aug;34(4):241-256.
   Google Scholar