A qualitative study of persons with persistent postconcussion symptoms and clinicians with concussion expertise to inform the development of a concussion-specific questionnaire

References

• McCrory P, Feddermann-Demont N, Dvoøák J, et al. What is the definition of sports-related concussion: a systematic review. Br J Sports Med. 2017;51(11):877–887.
   PubMed Web of Science ®Google Scholar
• West TA, Marion DW. Current recommendations for the diagnosis and treatment of concussion in sport: a comparison of three new guidelines. J Neurotrauma. 2014;31(2):159–168.
   PubMed Web of Science ®Google Scholar
• McCarthy MT, Kosofsky BE. Clinical features and biomarkers of concussion and mild traumatic brain injury in pediatric patients. Ann NY Acad Sci. 2015;1345(1):89–98.
   PubMedGoogle Scholar
• Carroll LJ, Cassidy JD, Holm L, et al. Methodological issues and research recommendations for mild traumatic brain injury: the WHO Collaborating Centre Task Force on mild Traumatic Brain Injury. J Rehabil Med. 2004;36:113–125.
   Web of Science ®Google Scholar
• Levin HS, Diaz-Arrastia RR. Diagnosis, prognosis, and clinical management of mild traumatic brain injury. Lancet Neurol. 2015;14(5):506–517.
   PubMed Web of Science ®Google Scholar
• McCrory P, Meeuwisse W, Dvorak J, et al. Consensus statement on concussion in sport—the 5th international conference on concussion in sport held in Berlin, October 2016. Br J Sports Med. 2017;51:1–10.
   PubMed Web of Science ®Google Scholar
• Carroll LJ, Cassidy JD, Peloso PM, et al. Prognosis for mild traumatic brain injury: results of the WHO Collaborating Centre Task Force on mild traumatic brain injury. J Rehabil Med. 2004;36:84–105.
   Web of Science ®Google Scholar
• Polinder S, Cnossen MC, Real RGL, et al. A multidimensional approach to post-concussion symptoms in mild traumatic brain injury. Front Neurol. 2018;9:1113.
   PubMed Web of Science ®Google Scholar
• Hiploylee C, Dufort PA, Davis HS, et al. Longitudinal study of postconcussion syndrome: not everyone recovers. J Neurotrauma. 2017;34(8):1511–1523.
   PubMed Web of Science ®Google Scholar
• McCrea M, Iverson GL, McAllister TW, et al. An integrated review of recovery after mild traumatic brain injury (MTBI): implications for clinical management. Clin Neuropsychol. 2009;23(8):1368–1390.
   PubMed Web of Science ®Google Scholar
• Wäljas M, Iverson GL, Lange RT, et al. A prospective biopsychosocial study of the persistent post-concussion symptoms following mild traumatic brain injury. J Neurotrauma. 2015;32(8):534–547.
   PubMed Web of Science ®Google Scholar
• Prince C, Bruhns ME. Evaluation and treatment of mild traumatic brain injury: the role of neuropsychology. Brain Sci. 2017;7(8).
   PubMed Web of Science ®Google Scholar
• Zemek R, Barrowman N, Freedman SB, et al. Clinical risk score for persistent postconcussion symptoms among children with acute concussion in the ED. JAMA. 2016;315(10):1014–1025.
   PubMed Web of Science ®Google Scholar
• Ontario Neurotrauma Foundation. Guidelines for concussion/mild traumatic brain injury & persistent symptoms. 3rd ed. Toronto (ON): Ontario Neurotrauma Foundation; 2018. p. 250.
   Google Scholar
• Snell DL, Martin R, Surgenor LJ, et al. What’s wrong with me? Seeking a coherent understanding of recovery after mild traumatic brain injury. Disabil Rehabil. 2017;39(19):1968–1975.
   PubMed Web of Science ®Google Scholar
• Levack WMM, Kayes NM, Fadyl JK. Experience of recovery and outcome following traumatic brain injury: a metasynthesis of qualitative research. Disabil Rehabil. 2010;32(12):986–999.
   PubMed Web of Science ®Google Scholar
• Sveen U, Ostensjo S, Laxe S, et al. Problems in functioning after a mild traumatic brain injury within the ICF framework: the patient perspective using focus groups. Disabil Rehabil. 2013;35(9):749–757.
   PubMed Web of Science ®Google Scholar
• Hammel J, Magasi S, Heinemann A, et al. Environmental barriers and supports to everyday participation: a qualitative insider perspective from people with disabilities. Arch Phys Med Rehabil. 2015;96(4):578–588.
   PubMed Web of Science ®Google Scholar
• Laxe S, Zasler N, Robles V, et al. ICF profiling of patients with traumatic brain injury: an International Professional Survey. Disabil Rehabil. 2014;36(1):82–88.
   PubMed Web of Science ®Google Scholar
• De Guise E, Bélanger S, Tinawi S, et al. Usefulness of the rivermead postconcussion symptoms questionnaire and the trail-making test for outcome prediction in patients with mild traumatic brain injury. Appl Neuropsychol. 2016;23(3):213–222.
   PubMed Web of Science ®Google Scholar
• Sikora E, Kennedy J, Lu L, et al. Social relations and PTSD symptoms influence mTBI symptom reporting in a military sample. Arch Phys Med Rehabil. 2018;99(11):e178.
   PubMedGoogle Scholar
• Üstün TB, Chatterji S, Kostanjsek N, et al. Developing the World Health Organization Disability Assessment Schedule 2.0. Bull World Health Organ. 2010;88(11):815–823.
   PubMed Web of Science ®Google Scholar
• Patrick DL, Burke LB, Gwaltney CJ, et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force Report: Part 1—eliciting concepts for a New PRO Instrument. Value Heal. 2011;14(8):967–977.
   PubMed Web of Science ®Google Scholar
• US Food and Drug Administration. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes. 2006;4:79.
   PubMed Web of Science ®Google Scholar
• Laxe S, Zasler N, Tschiesner U, et al. ICF use to identify common problems on a TBI neurorehabilitation unit in Spain. NeuroRehabilitation. 2011;29(1):99–110.
   PubMed Web of Science ®Google Scholar
• Laxe S, Tschiesner U, Zasler N, et al. What domains of the International Classification of Functioning, Disability and Health are covered by the most commonly used measurement instruments in traumatic brain injury research? Clin Neurol Neurosurg. 2012;114(6):645–650.
   PubMed Web of Science ®Google Scholar
• Madden RH, Bundy A. The ICF has made a difference to functioning and disability measurement and statistics. Disabil Rehabil. 2019;41(12):1450–1462.
   PubMed Web of Science ®Google Scholar
• World Health Organization. International Classification of Functioning, Disability and Health: ICF. World Health Organization; 2001.
   Google Scholar
• Fadyl JK, Theadom A, Channon A, et al. Recovery and adaptation after traumatic brain injury in New Zealand: longitudinal qualitative findings over the first two years. Neuropsychol Rehabil. 2019;29(7):1095–1112.
   PubMed Web of Science ®Google Scholar
• Snell DL, Martin R, Surgenor LJ, et al. Wrestling with uncertainty after mild traumatic brain injury: a mixed methods study. Disabil Rehabil. 2019. DOI:https://doi.org/10.1080/09638288.2018.1542461
   Google Scholar
• Brunger H, Ogden J, Malia K, et al. Adjusting to persistent post-concussive symptoms following mild traumatic brain injury and subsequent psycho-educational intervention: a qualitative analysis in military personnel. Brain Inj. 2014;28(1):71–80.
   PubMed Web of Science ®Google Scholar
• Creswell JW, Clark VL. Designing and conducting mixed methods research. Los Angeles (CA): Sage Publications; 2017.
   Google Scholar
• Moon K, Blackman D. A guide to understanding social science research for natural scientists. Conserv Biol. 2014;28:1–11.
   PubMed Web of Science ®Google Scholar
• Kim H, Sefcik JS, Bradway C. Characteristics of qualitative descriptive studies: a systematic review. Res Nurs Health. 2017;40(1):23–42.
   PubMed Web of Science ®Google Scholar
• Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Health. 2010;33:77–84.
   PubMed Web of Science ®Google Scholar
• Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334–340.
   PubMed Web of Science ®Google Scholar
• Cieza A, Fayed N, Bickenbach J, et al. Refinements of the ICF linking rules to strengthen their potential for establishing comparability of health information. Disabil Rehabil. 2016;8288(April):1–10.
   Google Scholar
• Cieza A, Geyh S, Chatterji S, et al. ICF linking rules: an update based on lessons learned. J Rehabil Med. 2005;37(4):212–218.
   PubMed Web of Science ®Google Scholar
• Cieza A, Brockow T, Ewert T, et al. Linking health-status measurements to the International Classification of Functioning, Disability and Health. J Rehabil. 2002;34(5):205–210.
   Web of Science ®Google Scholar
• World Health Organization. The ICD-10 classification of mental and behavioural disorders: clinical descriptions and diagnostic guidelines. Geneva; 2007.
   Google Scholar
• Ontario Neurotrauma Foundation. Standards for post-concussion care [Internet]; 2017 [cited 2019 Jun 19]. Available from: http://concussionsontario.org/wp-content/uploads/2017/06/ONF-Standards-for-Post-Concussion-Care-June-8-2017.pdf?platform=hootsuite
   Google Scholar
• van Ierssel J, Sveistrup H, Marshall S. Identifying the concepts contained within health-related quality of life outcome measures in concussion research using the International Classification of Functioning, Disability, and Health as a reference: a systematic review. Qual Life Res. 2018;27(12):3071–3086.
   PubMed Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
   Google Scholar
• O’Brien KK, Bayoumi AM, Strike C, et al. Exploring disability from the perspective of adults living with HIV/AIDS: development of a conceptual framework. Health Qual Life Outcomes. 2008;6:1–10.
   PubMed Web of Science ®Google Scholar
• Mishel M, Padilla G, Grant M, et al. Uncertainty in illness theory: a replication of the mediating effects of mastery and coping. Nurs Res. 1991;40(4):236–240.
   PubMed Web of Science ®Google Scholar
• Ponsford J, Nguyen S, Downing M, et al. Factors associated with persistent post-concussion symptoms following mild traumatic brain injury in adults. J Rehabil Med. 2019;51(1):32–39.
   PubMed Web of Science ®Google Scholar
• Kayd T, Harrington D, Adams R, et al.; American Congress of Rehabilitation Medicine. Definition of mild traumatic brain injury. J Head Trauma Rehabil. 1993;8(3):86–87.
   Google Scholar
• Smith B, McGannon KR. Developing rigor in qualitative research: problems and opportunities within sport and exercise psychology. Int Rev Sport Exerc Psychol. 2018;11(1):101–121.
   Web of Science ®Google Scholar