A delphi procedure on rehabilitation outcome for patients with moderate to severe traumatic brain injury; first phase of the Neurotraumatology Quality Registry (NET-QURE)
Keywords:Delphi procedure, outcome measures, traumatic brain injury
Objective: To select a set of rehabilitation outcome instruments for a national Neurotrauma Quality Registry (Net-QuRe) among professionals involved in the care of patients with traumatic brain injury.
Design: A 3-round online Delphi procedure.
Subjects: Eighty professionals from multiple disciplines working in 1 of the 8 participating rehabilitation centres were invited to participate. The response rate varied from 70% to 76% per round.
Methods: For the Delphi procedure, multiple outcome categories were defined based on the International Classification of Functioning, Disability and Health (ICF) with concomitant measurement instruments. For each category we strived for consensus on one instrument of at least 75%.
Results: After the first round, consensus was reached for the category subjective cognitive functioning. After the second round for quality of life, pain, general functioning, anxiety and depression, general psychological functioning, communication (impairment), and personal factors. Finally, after the third round, consensus was reached for activities of daily living, participation, self-awareness, and aphasia. No consensus was reached for the categories motor function, cognitive function, comorbidity, fatigue, and employment status.
Conclusion: Consensus was reached in 12 out of 17 outcome categories. A Delphi procedure seems to be a feasible method to collectively select measurement instruments for a multicentre study.
The aim of this study was to select a set of rehabilitation outcome instruments for a national Neurotrauma Quality Registry (Net-QuRe) among professionals involv-ed in the care of patients with traumatic brain injury. Eighty professionals from multiple disciplines working in 1 of the 8 participating rehabilitation centres were invit-ed to participate in a 3-round online Delphi procedure. Consensus was reached for the categories subjective cognitive functioning, quality of life, pain, general func-tioning, anxiety and depression, general psychological functioning, communication (impairment), personal factors, activities of daily living, participation, self-awareness, and aphasia. No consensus was reached for the categories motor function, cognitive function, comorbidity, fatigue, and employment status. A Delphi procedure seems to be a feasible method to collectively select measurement instruments for a multicentre study.
Ponsford JL, Downing MG, Olver J, Ponsford M, Acher R, Carty M, et al. Longitudinal follow-up of patients with traumatic brain injury: outcome at two, five, and ten years post-injury. J Neurotrauma 2014; 31: 64–77.
Andelic N, Howe EI, Hellstrom T, Sanchez MF, Lu J, Lovstad M, et al. Disability and quality of life 20 years after traumatic brain injury. Brain Behav 2018; 8: e01018.
Dahm J, Ponsford J. Long-term employment outcomes following traumatic brain injury and orthopaedic trauma: a ten-year prospective study. J Rehabil Med 2015; 47: 932–940.
Khan F, Amatya B, Judson R, Chung P, Truesdale M, Elmalik A, et al. Factors associated with long-term functional and psychological outcomes in persons with moderate to severe traumatic brain injury. J Rehabil Med 2016; 48: 442–448.
Van Essen TA, Volovici V, Cnossen MC, Kolias A, Ceyisakar I, Nieboer D, et al. Comparative effectiveness of surgery in traumatic acute subdural and intracerebral haematoma: study protocol for a prospective observational study within CENTER-TBI and Net-QuRe. BMJ Open 2019; 9: e033513.
Tso S, Saha A, Cusimano MD. The Traumatic Brain Injury Model Systems National Database: a review of published research. Neurotrauma Rep 2021; 2: 149–164.
Tate RL, Godbee K, Sigmundsdottir L. A systematic review of assessment tools for adults used in traumatic brain injury research and their relationship to the ICF. NeuroRehabilitation 2013; 32: 729–750.
van Heugten C, Caldenhove S, Crutsen J, Winkens I. An overview of outcome measures used in neuropsychological rehabilitation research on adults with acquired brain injury. Neuropsychol Rehabil 2019: 1–26.
Laxe S, Tschiesner U, Zasler N, Lopez-Blazquez R, Tormos JM, Bernabeu M. 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: 645–650.
World Health Organization (WHO). International Classification of Functioning, Disability and Health (ICF). Geneva: WHO; 2001.
Wilde EA, Whiteneck GG, Bogner J, Bushnik T, Cifu DX, Dikmen S, et al. Recommendations for the use of common outcome measures in traumatic brain injury research. Arch Phys Med Rehabil 2010; 91: 1650–1660 e17.
Hicks R, Giacino J, Harrison-Felix C, Manley G, Valadka A, Wilde EA. Progress in developing common data elements for traumatic brain injury research: version two--the end of the beginning. J Neurotrauma 2013; 30: 1852–1861.
Honan CA, McDonald S, Tate R, Ownsworth T, Togher L, Fleming J, et al. Outcome instruments in moderate-to-severe adult traumatic brain injury: recommendations for use in psychosocial research. Neuropsychol Rehabil 2019; 29: 896–916.
Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs 2000; 32: 1008–1015.
Limesurvey. 2015 [accessed 2015 April]. Available from: https://www.limesurvey.org/.
Sinha IP, Smyth RL, Williamson PR. Using the Delphi technique to determine which outcomes to measure in clinical trials: recommendations for the future based on a systematic review of existing studies. PLoS Med 2011; 8: e1000393.
Powell C. The Delphi technique: myths and realities. J Adv Nurs 2003; 41: 376–382.
meetinstrumenten in de zorg. 2015 [accessed 2015 May]. Available from: https://meetinstrumentenzorg.nl.
Nasreddine ZS, Phillips NA, Bedirian V, Charbonneau S, Whitehead V, Collin I, et al. The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment. J Am Geriatr Soc 2005; 53: 695–699.
Howell D, Fitch M, Bakker D, Green E, Sussman J, Mayo S, et al. Core domains for a person-focused outcome measurement system in cancer (PROMS-Cancer Core) for routine care: a scoping review and Canadian Delphi Consensus. Value Health 2013; 16: 76–87.
Schmitt J, Langan S, Stamm T, Williams HC. Core outcome domains for controlled trials and clinical recordkeeping in eczema: international multiperspective Delphi consensus process. J Invest Dermatol 2011; 131: 623–630.
Taylor WJ. Preliminary identification of core domains for outcome studies in psoriatic arthritis using Delphi methods. Ann Rheum Dis 2005; 64 Suppl 2: ii110–2.
Zochling J, Sieper J, van der Heijde D, Braun J. Development of a core set of domains for data collection in cohorts of patients with ankylosing spondylitis receiving anti-tumor necrosis factor-alpha therapy. J Rheumatol 2008; 35: 1079–1082.
Jensen-Doss A, Hawley KM. Understanding barriers to evidence-based assessment: clinician attitudes toward standardized assessment tools. J Clin Child Adolesc Psychol 2010; 39: 885–896.
Jones J, Hunter D. Consensus methods for medical and health services research. BMJ 1995; 311: 376–380.
Distler O, Behrens F, Pittrow D, Huscher D, Denton CP, Foeldvari I, et al. Defining appropriate outcome measures in pulmonary arterial hypertension related to systemic sclerosis: a Delphi consensus study with cluster analysis. Arthritis Rheum 2008; 59: 867–875.
Dos Santos F, Drymiotou S, Antequera Martin A, Mol BW, Gale C, Devane D, et al. Development of a core outcome set for trials on induction of labour: an international multistakeholder Delphi study. BJOG 2018; 125: 1673–1680.
Gazi H, Pope JE, Clements P, Medsger TA, Martin RW, Merkel PA, et al. Outcome measurements in scleroderma: results from a delphi exercise. J Rheumatol 2007; 34: 501–509.
Hutchinson A, Fowler P. Outcome measures for primary health care: what are the research priorities? Br J Gen Pract 1992; 42: 227–231.
Kirschneck M, Sabariego C, Singer S, Tschiesner U. Assessment of functional outcomes in patients with head and neck cancer according to the International Classification of Functioning, Disability and Health Core Sets from the perspective of the multi-professional team: results of 4 Delphi surveys. Head Neck 2014; 36: 954–968.
Winser SJ, Smith C, Hale LA, Claydon LS, Whitney SL. Balance outcome measures in cerebellar ataxia: a Delphi survey. Disabil Rehabil 2015; 37: 165–170.
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Copyright (c) 2021 Lianne D. Peppel, Majanka H. Heijenbrok-Kal, Thomas A. van Essen, Godard C. W. de Ruiter, Wilco C. Peul, Gerard M. Ribbers
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