Administration ManualDisorders of Consciousness Scale(DOCS)Theresa Louse-Bender Pape, Dr.PH., MA., CCC-SLPDepartment of Veterans AffairsEdward Hines, Jr. HospitalHines, IL 60141ManualSandra Lundgren PhD, ABPPAnn M. Guernon, MS, CCC-SLPJames P. Kelly, MDAllen W. Heinemann, PhD, ABPPOctober 2011

Table of ContentsPrologue:About the Primary Author of the DOCSAcknowledgments:Study ParticipantsAdvisors & Collaborative PartnersResearch Team MembersCurrent and/or Past Subject Recruitment SitesFundingAbbreviations used in Manual.6.888899.1010101012121212Conceptual Framework. .Figure 2: Conceptual Framework.Why is the DOCS Different.Table 1: Comparison of Psychometric Properties of DOCS.DOCS Authors’ Conclusion: Comparison of Psychometric Properties .Summary: Why the DOCS is Different.Theory of DOCS.Rating Scale Development.Test Scoring & Scoring Forms.Test Administration Procedure Development.Subscales Selection.Table 2: Test Item Selection & Corresponding Neuroanatomical Level.131315161718181919192022.Chapter 1: Introduction to the Concepts of the DOCSDescription of MeasureHistory & Development of the DOCSFigure 1: HistoryPurposeComponents of the DOCSTimeframe to Administer the DOCSWho Should Administer the DOCSAdministration & Scoring Protocol Training Requirements.Chapter 2: Theoretical Basis of the DOCSChapter 3: Measurement & Technical Properties of the DOCSStudy Methods:Samples.Table 3: Demographics of Initial Study Sample (N 95).DOCS Test Items used in Each of the Five Analyses.Data Collection Procedures.Consciousness: Definition & Measurement.Data Preparation: Transformation of Behavioral Data.Table 4: Average Item Calibration in DOCunits (DOCS Measures).Psychometric Properties of DOCS Test:DOCS Rating Scale.Table 5: Average Measures in DOCunit (DOCS Measures) Item & Rating CategoryReliability & Validity.Inter-rater Reliability: Agreement & Severity.Construct Validity.2232425252626272728303030

Predictive Validity.31Predictive Validity: Recovery of Consciousness.31Predictive Value of Baseline DOCS.31Table 6: Predictor Variables Defined for Baseline DOCS Analyses.32Initial Severity & Recovery Rates by Individuals & Groups.32Bivariate Results & Multivariate Model Development.32Table 7: Bivariate Analyses According to Entire Sample & Subsample.33Predictive Values: Positive & Negative & Multivariate Model Development.33Table 8: Predictive Values Positive & Negative.33Predictive Value of DOCS Change.33Table 9: Average DOCS Measurements & Days After Injury DOCS Completed 34Table 10: Mean Change Between DOCS1 & Subsequent DOCS34Table 11: Predictive Values Positive & Negative by 4,8,& 12 Months35Table 12: Predictive Probabilities for Recovery of Consciousness.36Predictive Validity: Activity & Participation.36Table 13: Definition of Functional Outcomes.37Table 14: Predictor Variables Examined.38Table 15: Final Multivariate Logistic Regression Models.39Predictive Validity: Autonomy with Expression of Needs & Ideas.39Figure 3: Probability of More Autonomy with Expression.41Figure 4: Probability of More Autonomy with Expression.42Predictive Validity: Autonomy with Expression CHI vs. OBI.42Table 16: Description of Total Sample by Means Standard Deviation / Etiology 42Table 17: Description of Total Sample by Proportions & Etiology.43Table 18: Potential Explanatory Variables.44Table 19: Dichotomous Outcomes using FIM 44Table 20: Final Predictor Model for Autonomy with Expression 1-Year after Injury 45Predictive Validity Satisfaction with Life at 1 Year45Table 21: Study Variables: Possibly Influencing Life Satisfaction47Concomitant Injury & Co-Existing Conditions48Cognitive Impairments: Neurobehavioral Functioning During IPR.48Table 22: Descriptive Statistics: Central Tendency49Table 23: Relationship Between Study Variables & SWLS50Chapter 4: Test Administration & ScoringOrganization of the DOCS.Testing Guidelines.Timeframe to Repeat the DOCS.Creating Optimal Testing Conditions:Environment.Patient / Positioning Guidelines.Administering Test Items / Procedures:General Administration Instruction.Baseline Observations.Testing Readiness.Scoring Items.Table 24: Rating Scale Overview.Generalized versus Localized Responses.Test Stimuli Administration:Starting the Test.Social Knowledge Subscale.Taste & Swallowing Subscale.Olfactory Subscale.3525252535354545454555556565658

Proprioceptive SubscaleTactile SubscaleAuditory SubscaleVisual SubscaleTesting Readiness Score.6061646568Chapter 5: How to Build the DOCS Testing KITCreating a DOCS Kit.Table 25: Items for DOCS Kit.Use of DOCS Kit.696970Chapter 6: Conversion of Raw DOCS Scores & Interpretation of DOCS MeasuresMethod to Convert DOCS Raw Score into DOCS Measures.71Scoring Tables & Conversion Charts: Total DOCS.72Scoring Tables & Conversion Charts: DOCS Modality Subscales.72Accuracy of Converted DOCS Measures: Total & Modality Measures.72Interpretation.72Table 26: Total DOCS Scoring Table.73Table 27: Traumatic Brain Injury Conversion Chart for Total DOCS Measure. 74Table 28: Non-Traumatic Brain Injury Conversion Chart for Total DOCS Measure 75Table 29: Modality Raw Score for Tactile, Auditory, & Visual76Table 30: Conversion Chart: DOCS Modality Measure77Chapter 7: Clinical & Rehabilitation Applications of the DOCSClinical Use of the DOCS & Development of Medical Rehabilitation Plans. .Magnitude of Change with DOCS.Table 31: Predicted Probabilities for Recovering Consciousness in One-Year.Clinical Applications of DOCS.Figure 5: Average DOCS Measures Every 2 Weeks.Figure 6: DOCS Results for One Subject By Modality.Figure 7: Short Term Effectiveness of Neurostimulant.Medication AnalysisTable 32: Description of Total Sample & Study Group by Means SD.7878787979798081Chapter 8: Future Directions for the DOCSInstrumental Development & Refinement.Prognostication Research.Diagnostic Research.828383Chapter 9: DOCS Research Study: Experimental ItemsObjective of Further DOCS Research.84Table 33: Experimental Items for DOCS.84Table 34: Research Test Item Selection & Corresponding Neuroanatomic Level 85Chapter 10: References .486

Appendixes:Appendix A:.Test Stimuli & Highest Level of CNS ProcessingAppendix B:.Consciousness AlgorithmProbes to ConsciousnessConsciousness Scoring FormAppendix C:.DOCS Scoring TableTraumatic Brain Injury Conversion Chart for Total DOCS MeasureNon-Traumatic Brain Injury Conversion Chart for Total DOCS MeasureModality Raw Score for Tactile, Auditory, & VisualConversion Chart: DOCS Modality MeasureAppendix D:.Funny Face PictureAppendix E:.DOCS Rating Form A (Short Form)DOCS Rating Form B: Non-Research (Long Form)DOCS Rating Form B: Research / Experimental Items (Long Form)59094100106108

PrologueABOUT THE PRIMARY AUTHOR OF THE DOCSDr. Theresa Louise-Bender Pape is a Clinical Neuroscientist with the Veterans Administration(VA) Rehabilitation Research and Development (RR&D) Service and a Research Associate Professor atNorthwestern University’s Feinberg School of Medicine in the Department of Physical Medicine andRehabilitation. Dr. Pape is also a clinical research associate with Marianjoy Rehabilitation Hospital.Dr. Pape earned her master’s of arts (MA) degree in speech-language pathology from WesternMichigan University in 1986. She provided speech-language services to persons with traumatic braininjury (TBI) for several years. Dr. Pape then completed a pre-doctoral fellowship with the VA HealthServices Research and Development Service in 1999 as well as earning her doctorate of public health(Dr. PH) from the University of Illinois at Chicago in 1999. Dr. Pape completed a post-doctoral fellowshipin 2001 at Northwestern’s Institute for Health Services Research and Policy Studies (IHSRPS), which isan Advanced Rehabilitation Research Training Program co-sponsored by the National Institute onDisability and Rehabilitation Research (NIDRR) and the National Research Service Awards (NRSA). Dr.Pape was also awarded a Merit Switzer fellowship through NIDRR. After completing this fellowship in2001 Dr. Pape went on to receive three consecutive career development awards with the VA RR&Dservice. First she received a Research Career Development Award to study rehabilitation measurementand outcomes post severe TBI. She subsequently received an Advanced Research Career DevelopmentAward to study advanced neurosciences and neural plasticity. Dr. Pape received the third award, aCareer Development Transition Award, to study neural plasticity in neurorehabilitation after TBI.Dr. Pape’s pre- and post-doctoral training cut across the traditional boundaries of medicalrehabilitation research and this training builds on her clinical experiences in traumatic brain injury (TBI).Dr. Pape applies and synthesizes her clinical experiences and advanced training in neurosciences,neural plasticity, CNS repair mechanisms, measurement/psychometrics, outcomes, statistical analysesand research design to enable the conduct of research within the theme of neural plasticity inneurorehabilitation of TBI. Within this research tract Dr. Pape’s foci are rehabilitation measurement,effectiveness and outcomes.Dr. Pape’s first research project focused on rehabilitation measurement and outcomes and theDisorders of Consciousness Scale (DOCS) is a product of this effort. While developing the DOCS Dr.Pape’s perspective has been that the DOCS measures must be useful clinically for predicting outcomesand useful for conducting clinical trials during coma recovery. The first outcome Dr. Pape chose toexamine is recovery of consciousness. Additional outcomes that will be examined relate to recovery oflong term function. While standardized tests in general are routinely used to develop prognosis,standardized test results are also used to diagnose patients. For the severe TBI population Dr. Papedecided that prognostication, rather than diagnostics, was the first priority when developing the DOCS.Dr. Pape chose to first enhance the prognostic utility of the DOCS because (a) there is very littleevidence supporting the existence of multiple sub-syndromes of altered states of consciousness, (b)existing evidence only supports clinical consensus criteria to make distinctions between altered states ofconsciousness (e.g., vegetative versus minimally conscious), and (c) families need information aboutwhat to expect in order to respond to and cope with the common logistical, financial, personal, andethical issues associated with a lifetime of severe impairments.While Dr. Pape chose to focus first on prognostication, diagnosing distinct sub-syndromes ofaltered stat