A longitudinal follow-up study of parent-reported family impact and quality of life in young patients with traumatic and non-traumatic brain injury

References

• de Kloet AJ, Hilberink SR, Roebroeck ME, et al. Youth with acquired brain injury in The Netherlands: a multi-Centre study. Brain Inj. 2013;27(7-8):843–849.
   PubMed Web of Science ®Google Scholar
• Greenwald BD, Burnett DM, Miller MA. Congenital and acquired brain injury. 1. Brain injury: epidemiology and pathophysiology. Arch Phys Med Rehabil. 2003;84(3 Suppl 1):S3–S7.
   PubMed Web of Science ®Google Scholar
• Allonsius F, De Kloet AJ, Van Markus-Doornbosch F, et al. Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting. Brain Inj. 2021;35(5):563–573.
   PubMed Web of Science ®Google Scholar
• Anaby D, Law M, Hanna S, et al. Predictors of change in participation rates following acquired brain injury: results of a longitudinal study. Dev Med Child Neurol. 2012;54(4):339–346.
   PubMed Web of Science ®Google Scholar
• Arakelyan S, Maciver D, Rush R, et al. Family factors associated with participation of children with disabilities: a systematic review. Dev Med Child Neurol. 2019;61(5):514–522.
   PubMed Web of Science ®Google Scholar
• Camara-Costa H, Francillette L, Opatowski M, et al. Participation seven years after severe childhood traumatic brain injury. Disabil Rehabil. 2019;42(17):2402–2411.
   PubMed Web of Science ®Google Scholar
• Camara-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(2):515–528.
   PubMed Web of Science ®Google Scholar
• Rashid M, Goez HR, Mabood N, et al. The impact of pediatric traumatic brain injury (TBI) on family functioning: a systematic review. J Pediatr Rehabil Med. 2014;7(3):241–254.
   PubMedGoogle Scholar
• van Markus-Doornbosch F, van der Holst M, de Kloet AJ, et al. Fatigue, participation and quality of life in adolescents and young adults with acquired brain injury in an outpatient rehabilitation cohort. Dev Neurorehabil. 2020;23(5):328–335.
   PubMed Web of Science ®Google Scholar
• Ilmer EC, Lambregts SA, Berger MA, et al. Health-related quality of life in children and youth with acquired brain injury: two years after injury. Eur J Paediatr Neurol. 2016;20(1):131–139.
   PubMed Web of Science ®Google Scholar
• Grant CJ, Doig LF, Everson J, et al. Impact of patient and family involvement in Long-Term outcomes. Crit Care Nurs Clin North Am. 2020;32(2):227–242.
   PubMed Web of Science ®Google Scholar
• Knight S, Takagi M, Fisher E, et al. A systematic critical appraisal of Evidence-Based clinical practice guidelines for the rehabilitation of children With moderate or severe acquired brain injury. Arch Phys Med Rehabil. 2019;100(4):711–723.
   PubMed Web of Science ®Google Scholar
• Anderson V, Catroppa C. Advances in postacute rehabilitation after childhood-acquired brain injury: a focus on cognitive, behavioral, and social domains. Am J Phys Med Rehabil. 2006;85(9):767–778.
   PubMed Web of Science ®Google Scholar
• Reuter-Rice K, Eads JK, Berndt S, et al. The initiation of rehabilitation therapies and observed outcomes in pediatric traumatic brain injury. Rehabil Nurs. 2018;43(6):327–334.
   PubMed Web of Science ®Google Scholar
• Forsyth R. The difference rehabilitation can make after acquired brain injury. Dev Med Child Neurol. 2022;64(1):7.
   PubMed Web of Science ®Google Scholar
• Hocking MC, Hobbie WL, Deatrick JA, et al. Neurocognitive and family functioning and quality of life among young adult survivors of childhood brain tumors. Clin Neuropsychol. 2011;25(6):942–962.
   PubMed Web of Science ®Google Scholar
• Moscato E, Patronick J, Wade SL. Family functioning and adaptation following pediatric brain tumor: a systematic review. Pediatr Blood Cancer. 2022;69(2):e29470.
   PubMed Web of Science ®Google Scholar
• Moore M, Robinson G, Mink R, et al. Developing a Family-Centered care model for critical care After pediatric traumatic brain injury. Pediatr Crit Care Med. 2015;16(8):758–765.
   PubMed Web of Science ®Google Scholar
• Hickey L, Anderson V, Jordan B. Australian parent and sibling perspectives on the impact of paediatric acquired brain injury on family relationships during the first 6 weeks at home. Health Soc Care Community. 2022;30(6):e5204–e5212.
   PubMed Web of Science ®Google Scholar
• Brown FL, Whittingham K, Sofronoff K, et al. Parenting a child with a traumatic brain injury: experiences of parents and health professionals. Brain Inj. 2013;27(13-14):1570–1582.
   PubMed Web of Science ®Google Scholar
• de Kloet AJ, Lambregts SA, Berger MA, et al. Family impact of acquired brain injury in children and youth. J Dev Behav Pediatr. 2015;36(5):342–351.
   PubMed Web of Science ®Google Scholar
• Jones S, Tyson S, Yorke J, et al. The impact of injury: the experiences of children and families after a child’s traumatic injury. Clin Rehabil. 2021;35(4):614–625.
   PubMed Web of Science ®Google Scholar
• Tramonti F, Bonfiglio L, Di Bernardo C, et al. Family functioning in severe brain injuries: correlations with caregivers’ burden, perceived social support and quality of life. Psychol Health Med. 2015;20(8):933–939.
   PubMed Web of Science ®Google Scholar
• Huang IC, Anderson M, Gandhi P, et al. The relationships between fatigue, quality of life, and family impact among children with special health care needs. J Pediatr Psychol. 2013;38(7):722–731.
   PubMed Web of Science ®Google Scholar
• Wade SL, Gerry Taylor H, Yeates KO, et al. Long-term parental and family adaptation following pediatric brain injury. J Pediatr Psychol. 2006;31(10):1072–1083.
   PubMed Web of Science ®Google Scholar
• Rivara JM, Jaffe KM, Polissar NL, et al. Predictors of family functioning and change 3 years after traumatic brain injury in children. Arch Phys Med Rehabil. 1996;77(8):754–764.
   PubMed Web of Science ®Google Scholar
• Micklewright JL, King TZ, O’Toole K, et al. Parental distress, parenting practices, and child adaptive outcomes following traumatic brain injury. J Int Neuropsychol Soc. 2012;18(2):343–350.
   PubMed Web of Science ®Google Scholar
• Yeates KO, Taylor HG, Rusin J, et al. Premorbid child and family functioning as predictors of post-concussive symptoms in children with mild traumatic brain injuries. Int J Dev Neurosci. 2012;30(3):231–237.
   PubMed Web of Science ®Google Scholar
• Ponsford J, Schonberger M. Family functioning and emotional state two and five years after traumatic brain injury. J Int Neuropsychol Soc. 2010;16(2):306–317.
   PubMed Web of Science ®Google Scholar
• Sady MD, Sander AM, Clark AN, et al. Relationship of preinjury caregiver and family functioning to community integration in adults with traumatic brain injury. Arch Phys Med Rehabil. 2010;91(10):1542–1550.
   PubMed Web of Science ®Google Scholar
• Allonsius F, van Markus-Doornbosch F, de Kloet AJ, et al. Fatigue in young patients with acquired brain injury in the rehabilitation setting: categorizing and interpreting fatigue severity levels. Dev Neurorehabil. 2022;25(8):542–553.
   PubMed Web of Science ®Google Scholar
• Allonsius F, de Kloet A, Bedell G, et al. Participation restrictions among children and young adults with acquired brain injury in a pediatric outpatient rehabilitation cohort: the patients’ and parents’ perspective. Int J Environ Res Public Health. 2021;18(4):1625.
   PubMed Web of Science ®Google Scholar
• Cuschieri S. The STROBE guidelines. Saudi J Anaesth. 2019;13(Suppl 1):S31–S34.
   PubMed Web of Science ®Google Scholar
• van Pelt DE, de Kloet A, Hilberink SR, et al. The incidence of traumatic brain injury in young people in the catchment area of the university hospital rotterdam, The Netherlands. Eur J Paediatr Neurol. 2011;15(6):519–526.
   PubMed Web of Science ®Google Scholar
• Jain S, Iverson LM. Glasgow coma scale. Treasure Island (FL): StatPearls; 2020.
   Google Scholar
• Varni JW, Sherman SA, Burwinkle TM, et al. The PedsQL family impact module: preliminary reliability and validity. Health Qual Life Outcomes. 2004;2:55.
   PubMedGoogle Scholar
• Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005;3:34.
   PubMedGoogle Scholar
• Varni JW, Burwinkle TM, Seid M, et al. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003;3(6):329–341.
   PubMedGoogle 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;5:2.
   PubMed Web of Science ®Google Scholar
• Engelen V, Haentjens MM, Detmar SB, et al. Health related quality of life of dutch children: psychometric properties of the PedsQL in The Netherlands. BMC Pediatr. 2009;9:68.
   PubMed Web of Science ®Google Scholar
• Limperg PF, Haverman L, van Oers HA, et al. 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;12:9.
   PubMedGoogle Scholar
• Medrano GR, Berlin KS, Hobart Davies W. Utility of the PedsQL family impact module: assessing the psychometric properties in a community sample. Qual Life Res. 2013;22(10):2899–2907.
   PubMed Web of Science ®Google Scholar
• Roderick JAL. A test of missing completely at random for multivariate data with missing values. J Am Stat Assoc. 1988;83(404):1198–1202.
   Web of Science ®Google Scholar
• Heymans MW, Eekhout I. Applied Missing Data Analysis With SPSS and R(Studio). 2019. https://bookdown.org/mwheymans/bookmi/.
   Google Scholar
• Bakdash JZ, Marusich LR. Repeated measures correlation. Front Psychol. 2017;8:456.
   PubMed Web of Science ®Google Scholar
• Chan YH. Biostatistics 104: correlational analysis. Singapore Med J. 2003;44(12):614–619.
   PubMedGoogle Scholar