Factors that Influence Follow-Up Care for Families of Children with Acquired Brain Injury: A Scoping Review

References

• Corrigan JD, Hammond FM. Traumatic brain injury as a chronic health condition. Arch Phys Med Rehabil. 2013;94(6):1199–201.doi:https://doi.org/10.1016/j.apmr.2013.01.023.
   PubMed Web of Science ®Google Scholar
• Rosema S, Crowe L, Anderson V. Social function in children and adolescents after traumatic brain injury: a systematic review 1989-2011. J Neurotrauma. 2012 May 1;29(7):1277–91. https://doi.org/10.1089/neu.2011.2144.
   PubMed Web of Science ®Google Scholar
• Ylvisaker M. Communication outcome in children and adolescents with traumatic brain injury. Neuropsychol Rehabil. 1993 Oct;3(4):367–87. doi:https://doi.org/10.1080/09602019308401447.
   Web of Science ®Google Scholar
• Ewing-Cobbs L, Fletcher JM, Levin HS, Iovino I, Miner ME. Academic achievement and academic placement following traumatic brain injury in children and adolescents: a two-year longitudinal study. J Clin Exp Neuropsychol. 1998 Dec;20(6):769–81. doi:https://doi.org/10.1076/jcen.20.6.769.1109.
   PubMed Web of Science ®Google Scholar
• Cameto R, Levine P, Wagner M. Transition planning for students with disabilities: a special topic report of findings from the National Longitudinal Transition Study-2 (NLTS2) [Internet]. National Center for Special Education Research; 2004. [accessed 14 Sep 2019]. Available from: http://files.eric.ed.gov/fulltext/ED496547.pd
   Google Scholar
• Petranovich CL, Smith-Paine J, Wade SL, Yeates KO, Taylor HG, Stancin T, et al. From early childhood to adolescence: lessons about traumatic brain injury from the Ohio Head Injury Outcomes Study. J Head Trauma Rehabil. 2020 Jan; 1;35(3):226–39. https://doi.org/10.1097/HTR.0000000000000555.
   PubMed Web of Science ®Google Scholar
• Ach E, Gerhardt CA, Barrera M, Kupst MJ, Meyer EA, Patenaude AF , et al. Family factors associated with academic achievement deficits in pediatric brain tumor survivors. Psychooncology. 2013 Aug;22(8):1731–37. doi:https://doi.org/10.1002/pon.3202.
   PubMed Web of Science ®Google Scholar
• Corrigan JD, Harrison-Felix C, Bogner J, Dijkers M, Terrill MS, Whiteneck G. Systematic bias in traumatic brain injury outcome studies because of loss to follow-up. Arch Phys Med Rehabil. 2003 Feb;84(2):153–60. doi:https://doi.org/10.1053/apmr.2003.50093.
   PubMed Web of Science ®Google Scholar
• Centers for Disease Control and Prevention. Report to congress: the management of traumatic brain injury in children [Internet]. Atlanta, GA: National Center for Injury Prevention and Control; Division of Unintentional Injury Prevention; 2018. https://www.cdc.gov/traumaticbraininjury/pdf/reportstocongress/managementoftbiinchildren/TBI-ReporttoCongress-508.pdf
   Google Scholar
• Haarbauer-Krupa J, Ciccia A, Dodd J, Ettel D, Kurowski B, Lumba-Brown A , et al. Service delivery in the healthcare and educational systems for children following traumatic brain injury: gaps in care. J Head Trauma Rehabil. 2017 Jan;32(6):367–77. doi:https://doi.org/10.1097/HTR.0000000000000287.
   PubMed Web of Science ®Google Scholar
• Fuentes MM, Wang J, Haarbauer-Krupa J, Yeates KO, Durbin D, Zonfrillo MR, Jaffe KM, Temkin N, Tulsky D, Bertisch H, et al. Unmet rehabilitation needs after hospitalization for traumatic brain injury. Pediatrics. 2018 Apr 19;141(5):e2017–2859. https://doi.org/10.1542/peds.2017-2859.
   Web of Science ®Google Scholar
• Kingery KM, Narad ME, Taylor HG, Yeates KO, Stancin T, Wade SL. Do children who sustain traumatic brain injury in early childhood need and receive academic services 7 years after injury? J Dev Behav Pediatr. 2017 Sep 21;0:1–8.
   Google Scholar
• Keenan HT, Clark AE, Holubkov R, Ewing-Cobbs L. Changing healthcare and school needs in the first year after traumatic brain injury. J Head Trauma Rehabil. 2019;35(1):E67–77.doi:https://doi.org/10.1097/HTR.0000000000000499.
   Web of Science ®Google Scholar
• Conklin HM, Krull KR, Reddick WE, Pei D, Cheng C, Pui CH. Cognitive outcomes following contemporary treatment without cranial irradiation for childhood acute lymphoblastic leukemia. J Natl Cancer Inst. 2012 Sep 19;104(18):1386–95. https://doi.org/10.1093/jnci/djs344.
   PubMedGoogle Scholar
• Schreiber JE, Gurney JG, Palmer SL, Bass JK, Wang M, Chen S, Zhang H, Swain M, Chapieski ML, Bonner MJ, et al. Examination of risk factors for intellectual and academic outcomes following treatment for pediatric medulloblastoma. Neuro-Oncology. 2014 Aug;16(8):1129–36. doi:https://doi.org/10.1093/neuonc/nou006.
   PubMed Web of Science ®Google Scholar
• Glang A, Todis B, Thomas CW, Hood D, Bedell G, Cockrell J. Return to school following childhood TBI: who gets services? NeuroRehabilitation. 2008;23(6):477–86.doi:https://doi.org/10.3233/NRE-2008-23604.
   PubMed Web of Science ®Google Scholar
• Bennett TD, Niedzwecki CM, Korgenski EK, Bratton SL. Initiation of Physical, Occupational, and Speech Therapy in Children With Traumatic Brain Injury. Arch Phys Med Rehabil. 2013 Jul;94(7):1268–76. doi:https://doi.org/10.1016/j.apmr.2013.02.021.
   PubMed Web of Science ®Google Scholar
• Taylor CA, Bell JM, Breiding MJ, Xu L. Traumatic brain injury–related emergency department visits, hospitalizations, and deaths — united States, 2007 and 2013. MMWR Surveill Summ. 2017 Mar 17;66(9):1–16. https://doi.org/10.15585/mmwr.ss6609a1.
   PubMed Web of Science ®Google Scholar
• Arbogast KB, Curry AE, Pfeiffer MR, Zonfrillo MR, Haarbauer-Krupa J, Breiding MJ , et al. Point of health care entry for youth with concussion within a large pediatric care network. JAMA Pediatr. 2016 Jul 5;170(7):e160294. https://doi.org/10.1001/jamapediatrics.2016.0294.
   PubMed Web of Science ®Google Scholar
• Hux K, Schram CD, Goeken T. Misconceptions about brain injury: a survey replication study. Brain Inj. 2006 May;20(5):547–53. doi:https://doi.org/10.1080/02699050600676784.
   PubMed Web of Science ®Google Scholar
• Setnik L, Bazarian JJ. The characteristics of patients who do not seek medical treatment for traumatic brain injury. Brain Inj. 2007 Jan;21(1):1–9. doi:https://doi.org/10.1080/02699050601111419.
   PubMed Web of Science ®Google Scholar
• Slomine BS, McCarthy ML, Ding R, MacKenzie EJ, Jaffe KM, Aitken ME, Durbin DR, Christensen JR, Dorsch AM, Paidas CN, et al. Health care utilization and needs after pediatric traumatic brain injury. Pediatrics. 2006 Apr 1;117(4):e663–74. https://doi.org/10.1542/peds.2005-1892.
   PubMed Web of Science ®Google Scholar
• Keenan HT, Bratton SL, Dixon RR. Pediatricians’ knowledge, attitudes, and behaviors to screening children after complicated mild TBI: a survey. J Head Trauma Rehabil. 2016 Nov;32(6):385–92. doi:https://doi.org/10.1097/HTR.0000000000000265.
   Web of Science ®Google Scholar
• Huebner ARS, Cassedy A, Brown TM, Taylor HG, Stancin T, Kirkwood MW , et al. Use of mental health services by adolescents after traumatic brain injury: a secondary analysis of a randomized controlled trial. Pm&r. 2018 May;10(5):462–71. doi:https://doi.org/10.1016/j.pmrj.2017.10.004.
   Web of Science ®Google Scholar
• Klosky JL, Cash DK, Buscemi J, Lensing S, Garces-Webb DM, Zhao W , et al. Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer. J Cancer Surviv. 2008 Dec;2(4):225–32. doi:https://doi.org/10.1007/s11764-008-0063-0.
   PubMedGoogle Scholar
• Lundine JP, Peng J, Chen D, Lever K, Wheeler K, Groner JI , et al. The impact of driving time on pediatric TBI follow-up visit attendance. Brain Inj. 2020;34(2):262–68. doi:https://doi.org/10.1080/02699052.2019.1690679.
   PubMed Web of Science ®Google Scholar
• Lundine JP, Utz M, Jacob V, Ciccia AH. Putting the person in person-centered care: stakeholder experiences in pediatric traumatic brain injury. J Pediatr Rehabil Med. 2019;12(1):21–35.doi:https://doi.org/10.3233/PRM-180568.
   PubMed Web of Science ®Google Scholar
• Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol Internet]. 2018 Dec [cited 2020 Oct 11];18(1): https://doi.org/10.1186/s12874-018-0611-x.
   Web of Science ®Google Scholar
• Tricco AC, Lillie E, Zarin W, O’Brien K, Colquhoun H, Kastner M, et al. A scoping review on the conduct and reporting of scoping reviews. BMC Med Res Methodol Internet]. 2016 Dec [cited 2019 Dec 21];16(1). https://doi.org/10.1186/s12874-016-0116-4.
   Web of Science ®Google Scholar
• Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018 Oct 2;169(7):467. https://doi.org/10.7326/M18-0850.
   PubMed Web of Science ®Google Scholar
• Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005 Feb;8(1):19–32. doi:https://doi.org/10.1080/1364557032000119616.
   Google Scholar
• Colquhoun HL, Levac D, O’Brien KK, Straus S, Tricco AC, Perrier L, et al. Scoping reviews: time for clarity in definition, methods, and reporting. J Clin Epidemiol Internet]. 2014 Jul [cited 2014 Jul 22]. Available from: http://linkinghub.elsevier.com/retrieve/pii/S0895435614002108
   PubMed Web of Science ®Google Scholar
• Bramer W, Bain P. Updating search strategies for systematic reviews using EndNote. J Med Libr Assoc. 2017 Jul;105(3):285–89. doi:https://doi.org/10.5195/jmla.2017.183.
   PubMed Web of Science ®Google Scholar
• Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid AR. A web and mobile app for systematic reviews. Syst Rev Internet]. 2016 Dec [cited 2018 Aug 16];5(1). http://systematicreviewsjournal.biomedcentral.com/articles/https://doi.org/10.1186/s13643-016-0384-4
   PubMedGoogle Scholar
• Lever K, Peng J, Lundine JP, Caupp S, Wheeler K, Sribnick EA, et al. Attending follow-up appointments after pediatric traumatic brain injury: caregiver-perceived barriers and facilitators. J Head Trauma Rehabil. 2019;34(2):e21–34. doi:https://doi.org/10.1097/HTR.0000000000000433.
   PubMed Web of Science ®Google Scholar
• Hwang V, Trickey AW, Lormel C, Bradford AN, Griffen MM, Lawrence CP , et al. Are pediatric concussion patients compliant with discharge instructions? J Trauma Acute Care Surg. 2014 Jul;77(1):117–22. doi:https://doi.org/10.1097/TA.0000000000000275.
   PubMed Web of Science ®Google Scholar
• Spaw AJ, Lundine JP, Johnson SA, Peng J, Wheeler KK, Shi J, Yang G, Haley KJ, Groner JI, Xiang H, et al. Follow-up care adherence after hospital discharge in children with traumatic brain injury. J Head Trauma Rehabil. 2018;33(3):E1–10. doi:https://doi.org/10.1097/HTR.0000000000000314.
   PubMed Web of Science ®Google Scholar
• Cheung LLT, Wakefield CE, Ellis SJ, Mandalis A, Frow E, Cohn RJ. Neuropsychology reports for childhood brain tumor survivors: implementation of recommendations at home and school. Pediatr Blood Cancer. 2014 Jun;61(6):117–22. doi:https://doi.org/10.1002/pbc.24940.
   Web of Science ®Google Scholar
• Quillen J, Crawford E, Plummer B, Bradley H, Glidden R. Parental follow-through of neuropsychological recommendations for childhood-cancer survivors. J Pediatr Oncol Nurs. 2011 Sep;28(5):306–10. doi:https://doi.org/10.1177/1043454211418668.
   PubMed Web of Science ®Google Scholar
• van Elsland SL, Springer P, Steenhuis IHM, van Toorn R, Schoeman JF, van Furth AM. Tuberculous Meningitis: barriers to Adherence in home treatment of children and caretaker perceptions. J Trop Pediatr. 2012 Aug 1;58(4):275–79. https://doi.org/10.1093/tropej/fmr095.
   PubMed Web of Science ®Google Scholar
• Ghafuri DL, Sanger M, Rodeghier M, DeBaun MR. Integrated psychology support and comprehensive cognitive evaluation improves access to special education services for children with sickle cell disease. Pediatr Blood Cancer. 2019 Aug;66(8):e27755. doi:https://doi.org/10.1002/pbc.27755.
   PubMed Web of Science ®Google Scholar
• Currie D, Snedden T, Pierpoint L, Comstock RD, Grubenhoff JA. Factors influencing primary care follow-up after pediatric mild traumatic brain injury. J Head Trauma Rehabil. 2019;34(4):E11–9.doi:https://doi.org/10.1097/HTR.0000000000000461.
   PubMed Web of Science ®Google Scholar
• Keenan RP, Lovanio K, Lapidus G, Chenard D, Smith S. Improved concussion discharge instructions in a pediatric emergency department. Adv Emerg Nurs J. 2020 Mar;42(1):63–70. doi:https://doi.org/10.1097/TME.0000000000000280.
   PubMed Web of Science ®Google Scholar
• Levesque J-F, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health. 2013;12(1):18.doi:https://doi.org/10.1186/1475-9276-12-18.
   PubMed Web of Science ®Google Scholar
• Centers for Disease Control and Prevention. The Report to Congress on Traumatic Brain Injury in the United States: epidemiology and Rehabilitation. Atlanta, GA: National Center for Injury Prevention and Control; Division of Unintentional Injury Prevention; 2014.
   Google Scholar
• Ledoux -A-A, Tang K, Yeates KO, Pusic MV, Boutis K, Craig WR, Gravel J, Freedman SB, Gagnon I, Gioia GA, et al. Natural progression of symptom change and recovery from concussion in a pediatric population. JAMA Pediatr. 2019 Jan 7;173(1):e183820. doi:https://doi.org/10.1001/jamapediatrics.2018.3820.
   PubMed Web of Science ®Google Scholar
• Rivara FP, Tennyson R, Mills B, Browd SR, Emery CA, Gioia G, Giza CC, Herring S, Janz KF, LaBella C, et al. Consensus statement on sports-related concussions in youth sports using a modified Delphi approach. JAMA Pediatr. 2020 Jan 1;174(1):79. doi:https://doi.org/10.1001/jamapediatrics.2019.4006.
   PubMed Web of Science ®Google Scholar
• Hunt AW, De Feo L, Macintyre J, Greenspoon D, Dick T, Mah K , et al. Development and feasibility of an evidence-informed self-management education program in pediatric concussion rehabilitation. BMC Health Serv Res. 2016 Dec;16(1):400. doi:https://doi.org/10.1186/s12913-016-1664-3.
   PubMed Web of Science ®Google Scholar
• Sandhu H, Wilson K, Reed N, Mihailidis A. A mobile phone app for the self-management of pediatric concussion: development and usability testing. JMIR Hum Factors. 2019 May 31;6(2):e12135. doi: https://doi.org/10.2196/12135.
   PubMedGoogle Scholar
• Salley J, Crook L, Iske T, Ciccia A, Lundine JP. Acute and long-term services for elementary and middle school children with early childhood brain injury. Am J Speech Lang Pathol. 2021;Epub before print:1–12.
   Google Scholar
• Glang A, Ylvisaker M, Stein M, Ehlhardt L, Todis B, Tyler J. Validated instructional practices: application to students with traumatic brain injury. J Head Trauma Rehabil. 2008 Jul;23(4):243–51. doi:https://doi.org/10.1097/01.HTR.0000327256.46504.9f.
   PubMed Web of Science ®Google Scholar
• Hartman LR, Tibbles A, Paniccia A, Lindsay S. A qualitative synthesis of families’ and students’ hospital-to-school transition experiences following acquired brain injury. Glob Qual Nurs Res. 2015 Nov 5;2:233339361561430. doi:https://doi.org/10.1177/2333393615614307.
   Google Scholar
• Taylor HG, Yeates KO, Wade SL, Drotar D, Stancin T, Montpetite M. Long-term educational interventions after traumatic brain injury in children. Rehabil Psychol. 2003;48(4):227–36.doi:https://doi.org/10.1037/0090-5550.48.4.227.
   Web of Science ®Google Scholar
• Glang A, Tyler J, Pearson S, Todis B, Morvant M. Improving educational services for students with TBI through statewide consulting teams. NeuroRehabilitation. 2004;19(3):219–31.doi:https://doi.org/10.3233/NRE-2004-19305.
   PubMed Web of Science ®Google Scholar
• Hartman LR, Duncanson M, Farahat SM, Lindsay S. Clinician and educator experiences of facilitating students’ transition back to school following acquired brain injury: a qualitative systematic review. Brain Inj. 2015;29(12):1387–99.doi:https://doi.org/10.3109/02699052.2015.1071431.
   PubMed Web of Science ®Google Scholar
• Jimenez N, Ebel BE, Wang J, Koepsell TD, Jaffe KM, Dorsch A, Durbin D, Vavilala MS, Temkin N, Rivara FP, et al. Disparities in disability after traumatic brain injury among hispanic children and adolescents. Pediatrics. 2013 May 6;131(6):e1850–6. doi:https://doi.org/10.1542/peds.2012-3354.
   PubMed Web of Science ®Google Scholar
• Jimenez N, Osorio M, Ramos JL, Apkon S, Ebel BE, Rivara FP. Functional Independence after inpatient rehabilitation for traumatic brain injury among minority children and adolescents. Arch Phys Med Rehabil. 2015 Jul;96(7):1255–61. doi:https://doi.org/10.1016/j.apmr.2015.02.019.
   PubMed Web of Science ®Google Scholar
• Jimenez N, Symons RG, Wang J, Ebel BH, Vavilala MS, Buchwald D , et al. Outpatient rehabilitation for medicaid-insured children hospitalized with traumatic brain injury. Pediatrics. 2016 Jun 1;137(6):e20153500–e20153500. doi:https://doi.org/10.1542/peds.2015-3500.
   PubMed Web of Science ®Google Scholar
• Moore M, Jimenez N, Rowhani-Rahbar A, Willis M, Baron K, Giordano J, Crawley D, Rivara FP, Jaffe KM, Ebel BE, et al. Availability of outpatient rehabilitation services for children after traumatic brain injury: differences by language and insurance status. Am J Phys Med Rehabil. 2016 Mar;95(3):204–13. doi:https://doi.org/10.1097/PHM.0000000000000362.
   PubMed Web of Science ®Google Scholar
• Reed N, Leeder K, Zemek R. Patient engagement in pediatric concussion research. Can Med Assoc J. 2018 Nov 7;190(Suppl):S28–30. doi: https://doi.org/10.1503/cmaj.180450.
   Web of Science ®Google Scholar