Disorders of Consciousness Management in Outpatient Setting

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1 Disorders of Consciousness Management in Outpatient Setting

2 Disclosure Statement Kirstine Carter, Ph.D. Alyssa Kelly, MA, CCC-SLP Kimberly Larriviere, OTR/L Margaret McKinney, PT, DPT Financial No financial disclosures. Non-Financial Employees of TIRR Memorial Hermann. Receive no compensation for speaking/presenting on the topic of DoC. Have no relevant relationship with products or services describe, reviewed, or compared in this presentation.

3 Objectives Provide an overview of Disorders of Consciousness (DoC) Understand the role of outpatient transdisciplinary team as critical part of continuum of care for patients with DoC Understand program development for outpatient setting for patients with Disorders of Consciousness

4 Arousal vs. Awareness AROUSAL AWARENESS COMA - - VEGETATIVE STATE (VS) MINIMALLY CONSCIOUS STATE (MCS) EMERGED FROM MCS +/++ - +/ Kothari, S., Gilbert-Baffoe, E., & O Brien, K.A. (2018). Disorders of Consciousness. In Eapen & Cifu (Eds.), Rehabilitation After Traumatic Brain Injury (pp. pages of chapter). Location: Publisher.

5 Arousal vs. Awareness Arousal level of consciousness Awareness content of consciousness MUST have arousal before someone can demonstrate awareness Laureys, S., Boly, M., Moonen, G., and Maquet, P. (2009). Coma. Encyclopedia of neuroscience, 2,

6 Definition of DoC DEATH LIFE UNCONSCIOUSNESS CONSCIOUSNESS COMA VEGETATIVE STATE MINIMALLY CONSCIOUS STATE CONSCIOUS Courtesy of Dr. Kothari

7 Behaviors in Vegetative State and MCS Kothari, S., Gilbert-Baffoe, E., & O Brien, K.A. (2018). Disorders of Consciousness. In Eapen & Cifu (Eds.), Rehabilitation After Traumatic Brain Injury (pp. pages of chapter). Location: Publisher.

8 Big Picture: Quick Glance Eyes closed, no sleep wake: comatose Eyes open, sleep wake: vegetative or unresponsive wakefulness (UWS) Eyes open, inconsistent awareness of environment and/or self: minimally conscious (MCS) Eyes open, aware of environment and/or self: emerged

9 Assessment of DoC 40% of pts diagnosed with Vegetative State were discovered to be conscious with standardized behavioral measures (Schnakers, et. Al, 2009) A long-term survival study of adult trauma patients found that patient s discharged to a skilled nursing facility were 34% more likely to die 3 years post-tbi than those discharged to home or to rehabilitation facilities (Davidson, et. al, 2011)

10 Assessment of DoC Behavioral measures are gold standard Coma Recovery Scale-Revised (CRS-R ) Individualized Quantitative Behavioral Assessment (IQBA) Require training and frequent repetition Can help identify how to structure your treatment Day, K.B., DiNapoli, M.V., Whyte, J. (2017). Detecting early recovery of consciousness: A comparison of methods. Neuropsychology Rehabilitation, Apr 7 (1-9). doi: /

11 Factors Masking Consciousness Hypoarousal Medical (medications, hydrocephalus, infection) Spasticity and contracture Environment Apraxia Attention span Impaired sleep-wake cycles Neuromuscular impairments including strength deficits, visual deficits, auditory deficits, etc. *These are potential factors that should be considered during evaluation and treatment* Giacino, J.T., Schnakers, C., Rodriguez-Moreno, D., Kalmar, K., Schiff, N., Hirsch, J. (2009). Behavioral assessment in patients with disorders of consciousness: Gold standard or fool s gold?. Progress in Brain Research, 177,

12 Transition to Outpatient

13 Outpatient Setting- Evaluation DoC specific medical background Date of injury, type of injury (traumatic vs nontraumatic, anoxic?), time since injury Inpatient stay? Identify if CRS-R testing was done and use results to guide evaluation Communication system? Family/caregiver report of current behaviors, videos if possible Ontario Neurotrauma Foundation. (2016, October). Clinical practice guideline for the rehabilitation of adults with moderate to severe tbi: Section I: Assessment and rehabilitation of brain injury Sequelae [Data file]. Retrieved from

14 Outpatient Setting- Evaluation DoC specific medical background Medication review - Depressants - Stimulants? Trialed stimulants? Timing of stimulants Arousal throughout the day Sleep-wake cycles C., Rosella, Placido B.,Savatore Calabro, R., (2013). Pharmacotherapy for disorders of consciousness: Are awakening drugs really a possibility?. Drugs, 73(17),

15 Outpatient Setting- Examination Non-DoC specific Vitals - Tracheostomy Management, Pulmonary Care, Secretion Management Bladder and Bowel management Oral and Dental Hygiene Spasticity (Modified Ashworth Scale and Tardieu) Intrathecal Baclofen Pump (ITB) Joint Movement and Range of Motion Exercise Posture and Position Mobility Management Transfers, Bed Mobility, Head Control Prevention of Secondary Complications Skin breakdown, Nutrition, Deep Vein Thrombosis Equipment and Orthotics Adaptive Technology and Environmental Management Communication Established System, Responding to Yes/No questions Family Support Counseling and Training Klingshirn, H., Grill, E., Bender, A, Strobl, R., Mittrach, R., Braitmayer, K., Muller, M., (2015). Quality of evidence of rehabilitation interventions in longterm care for people with severe disorders of consciousness after brain injury: A systematic review. J Rehabil Med, 47,

16 Outpatient Setting- Examination According to Elliott, Coleman, and Shiel (2005, p. 299) positional changes may have a significant impact on behaviours in vegetative and minimally conscious patients. Determine the following in a variety of positions and with different stimuli: Are they aroused? Do they move? reflexive, spontaneous, repetitive, to command * (against gravity or gravity eliminated) Do they respond to auditory input? Do they respond to visual input? Do they vocalize? Remember to keep in mind what you have learned about their PMH, area of injury and how this may impact their success at demonstrating these things

17 Goal Setting Collaborative goal setting between family, therapists, physician, and neuropsychologist Determine what primary goal is for this patient and this phase of therapy Establishing consciousness, communication, or is it more of caregiver training, HEP, etc. Giancino, J.T., Douglas, I., Katz, D.I., Schiff, N.D., Whyte, J., Ashman, E.J., Ashwal, S., Barbano, R., Hammond, F.M., Laureys, S., Ling, G.S.F., Nakase-Richardson, R., Seel, R.T., Yablon, S., Getchius, T.S.D., Gronseth, G.S., Armstrong, M.J. (2018) Practice guideline update recommendations summary: Disorders of consciousness. Neurology, 91, doi: /WNL

18 Sample Goals Samples: Consistency of command following Visual tracking Head control Seated balance Standing tolerance Swallowing HEP MUST discuss goals with other disciplines to prevent goal replication *Refer to Sample OT Goals for examples

19 Assessment in Outpatient: IQBA Emphasis on behavioral assessment in treatment of DoC clients (Giacino et. al., 2018) IQBAs can be created in the OP setting with Neuropsychology IQBA may detect command following quicker than CRS-R (Day, DiNapoli & Whyte, 2017) More practical than CRS-R in this setting Reasons to use: Used when behavior is ambiguous to see if it can be use for a communication system Used during medication trials for pre- and post-data VERY objective, requires consistency with administrators and instruction language

20 Assessment in Outpatient: IQBA Development of IQBA, as a team decide: (1.) Session administration variables such as patient positioning, stimulation to maximize alertness, preliminary range of motion exercises to facilitate motor responding (2.) The commands to be given, the number to be administered, the manner of administration, and the random order within a particular session (3.) The operational definition of a response and a format for recording responses (4.) Control conditions to minimize the influence of coincidental and reflexive responding. (Whyte, DiPasquale & Vaccaro, 1999)

21 Assessment in Outpatient: IQBA Importance of multidisciplinary team Involvement of caregivers Clinical uses of IQBA in outpatient Determine if client is following commands Assist in development of communication system Can track progress of recovery and response to treatment

22 Integrating Behavioral Measures for Treatment It is ideal to use what you have observed on standardized, behavioral measures in your interventions. For example, if patient A does not respond to visual stimuli, it may be appropriate to target interventions using auditory input rather than visual input.

23 Decision Tree

24 Treatment Interventions Sessions to target: Impaired arousal and/or consciousness - Neurostimulating positions and interventions ROM restrictions and or spasticity/hypertonicity impairing wheelchair or bed positioning - Serial casting, splinting - Wheelchair set up or positioning; positioning programs Command following Home exercise program and family training Wilson, B.A., Dhamapurkar, S., & Rose, A. (2016). Assessment and treatment of people with a disorder of consciousness: An account of some recent studies. Psychology & Neuroscience, 9(2),

25 Neurostimulating Interventions Using consistent commands across disciplines and tracking responses and arousal in sessions Get creative! Commands should be mixed with countercommands, silence and enough time for the pt to respond

26 Home Exercise Program (HEP) Arousal Standing programs Range of motion exercises Orthotics wear schedule IQBA Family could implement IQBA if applicable Seel, R.T., Douglas, J., Dennison, A.C., Heaner, S., Farris, K., Rogers, C. (2013). Specialized early treatment for persons with disorders of consciousness: Program components and outcomes. Arch Phys Med Rehabil, 94(10),

27 Things to Consider Use of equipment and technology: Switches, e-stim, FES bike, litegait, semg Communication with MD: Medication trials, lumbar puncture, sleep study, ITB pump Barriers and/or facilitators: Time of day, caregiver support, resources, endurance for activity, order of therapy, expectations for therapy Ontario Neurotrauma Foundation. (2016, October). Clinical practice guideline for the rehabilitation of adults with moderate to severe tbi: Section II : Assessment and rehabilitation of brain injury Sequelae [Data file]. Retrieved from

28 Discharge Giving clear HEP tailored to level of consciousness Expectations of when to return to therapy or return to MD Consciousness change Traditional therapy needed (bracing, equipment, HEP update, etc.) Change in status that opens up new goals for rehabilitation American Speech-Language Hearing Association (n.d.). Documentation in healthcare. Retrieved from

29 Outpatient Program Creation Summer Present Fall 2017: Creation of primary inter-disciplinary team Meeting with inpatient, outpatient medical and outpatient staff Winter/Spring 2018: Training modules for all staff and BI-specific (4 modules) Journal Clubs with inpatient team

30 Outpatient Program Creation Spring/Summer 2018: Lunch meetings with primary OP team and monthly meetings with IP team First referral Spring 2018 Summer/Fall 2018: Additional patients admitted to program Competency for OP BI Team for DoC Monthly/bi-monthly rounding

31 Potential barriers in OP Insurance limitations Staff education (specialized group) Communication between staff Scheduling Family and caregiver support and abilities Design of HEP and Plan of Care (POC) Measuring of Progress, Outcome measures Transportation Fatigue

32 Case Study- LE OP Community referral for OPMC, PT/OT/SLP evaluations on 2/9/18 Patient background information: GSW in 11/4/15 followed by anoxic injury 11/8/15 from cardiopulmonary arrest Inpatient rehabilitation 4/25/16 for 1 month and had short followup of home health Pt with very supportive family and living with mother and father, 2 children who his mother observed interacting with grunting/clicking noises, not performing movements spontaneously or to command. HEP including standing in stander, B UE and B LE stretches Family goals- communication system, walk and talk Medicaid required authorization

33 Case Study- LE Initial Evaluation: PT total A for all mobility, 10 sec head control when placed in position, moro reflex Initial PT goals: HEP, maintain head control for 30 seconds, caregiver safety of transfer OT total A for all Activities of Daily Living, flexor synergy positioning of Bilateral Upper Extremities Initial OT goals: HEP, donning positioning devices SLP NPO, groaned in response to non-preferred action, localization of sound reported but not observed at evaluation Initial SLP goals: HEP, demonstrate localized response to auditory stimulation, vocalize in response to pain/discomfort, follow stimuli through left and right visual fields, elicit a swallow with thermal tactile stimulation Initial Authorization Visit Count: PT (8), OT (4), SLP (8)

34 Case Study LE Action Steps Contacted physician to schedule sleep study Discussed medication trials Discussed sitting schedule to be up more during the day Coordinated scheduling of Lumbar Puncture for possible hydrocephalus

35 Case Study- LE Treatment: started 4/3/18 Coordination with PT, OT, SLP of observations of arousal, reflexive and spontaneous movement Trialed variety of stimulation Auditory- music, family voices Visual- pictures of children, familiar objects, mirror Tactile- e-stim, different surfaces, oral stimulation Vestibular- rocking in tilting in space wheelchair, standing, prone, seated positions Creation of IQBA for pt for tracking in session and as HEP Tracking behavior in and out of session Pre- and post-medical intervention Family training for IQBA and HEP Pt discharged due to transportation and to return to OP services when mother retires and following possible shunt surgery.

36 Case Study- LE Results Family subjective perceived improvement: improvement in arousal, increased in vocalizations with family Unable to establish a communication system Inadequate OT goal writing led to decreased authorized visits as compared to SLP and PT Importance of family training

37 Areas for Program Growth & Improvement Involve Neuropsychology from the beginning Improved rounding and handoffs Improved goal writing and documentation Referrals from other sources Continuum of care, transitioning between settings

38 References 1. American Speech-Language Hearing Association (n.d.). Documentation in healthcare. Retrieved from 2. Betts, K. & Cheng, V. (2018). Disorders of consciousness: A comprehensive treatment approach. [PowerPoint slides]. TIRR Memorial Hermann: Rehabilitation & Research, Houston, Texas. 3. Davidson, G.H., Hamlat, C.A., Rivara, F.P., Koepsell, T.D., Jurkovich, G.J., Arbabi, S. (2011). Long-term survival of adult trauma patients. JAMA, 305, Day, K.B., DiNapoli, M.V., Whyte, J. (2017). Detecting early recovery of consciousness: A comparison of methods. Neuropsychology Rehabilitation, Apr 7 (1-9). doi: / Elliott, L., Colemen, M., Shiel, A (2005). Effect of posture on levels of arousal and awareness in vegetative and minimally conscious state patients: a preliminary investigation. J Neurol Neurosurg Psychiatry, 76, Giancino, J.T., Douglas, I., Katz, D.I., Schiff, N.D., Whyte, J., Ashman, E.J., Ashwal, S., Barbano, R., Hammond, F.M., Laureys, S., Ling, G.S.F., Nakase- Richardson, R., Seel, R.T., Yablon, S., Getchius, T.S.D., Gronseth, G.S., Armstrong, M.J. (2018) Practice guideline update recommendations summary: Disorders of consciousness. Neurology, 91, doi: /WNL Giacino, J.T., Schnakers, C., Rodriguez-Moreno, D., Kalmar, K., Schiff, N., Hirsch, J. (2009). Behavioral assessment in patients with disorders of consciousness: Gold standard or fool s gold?. Progress in Brain Research, 177, Klingshirn, H., Grill, E., Bender, A, Strobl, R., Mittrach, R., Braitmayer, K., Muller, M., (2015). Quality of evidence of rehabilitation interventions in longterm care for people with severe disorders of consciousness after brain injury: A systematic review. J Rehabil Med, 47, Kothari, S., Gilbert-Baffoe, E., & O Brien, K.A. (2018). Disorders of Consciousness. In Eapen & Cifu (Eds.), Rehabilitation After Traumatic Brain Injury (pp ). 10. Laureys, S., Boly, M., Moonen, G., and Maquet, P. (2009). Coma. Encyclopedia of neuroscience, 2,

39 References cont. 11. Ontario Neurotrauma Foundation. (2016, October). Clinical practice guideline for the rehabilitation of adults with moderate to severe tbi: Section I: Assessment and rehabilitation of brain injury Sequelae [Data file]. Retrieved from Ontario Neurotrauma Foundation. (2016, October). Clinical practice guideline for the rehabilitation of adults with moderate to severe tbi: Section II : Assessment and rehabilitation of brain injury Sequelae [Data file]. Retrieved from Riganello, F., Arcuri, F., Pugliese, M.E., Lucca, L.F., Dolce, G., & Sannita, W.G., (2015). Coma recovery scale-r: Variability in the disorder of consciousness. BMC Neurology, 15:186, 1-7. doi Rosella, C., Placido, B.,Savatore Calabro, R., (2013). Pharmacotherapy for disorders of consciousness: Are awakening drugs really a possibility?. Drugs, 73(17), Schnakers, C., Vanhaudenhuyse, A., Giancino, J., Ventura, M., Boly, M., Majerus, S., Moonen, G., Laureys, S. (2009). Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment. BMC Neurology, 9(35), Seel, R.T., Douglas, J., Dennison, A.C., Heaner, S., Farris, K., Rogers, C. (2013). Specialized early treatment for persons with disorders of consciousness: Program components and outcomes. Arch Phys Med Rehabil, 94(10,) Whyte, J., & Dipasquale, M. C. (1995). Assessment of vision and visual attention in minimally responsive brain injured patients. Archives of physical medicine and rehabilitation, 76(9), Whyte, J., DiPasquale, M. C., & Vaccaro, M. (1999). Assessment of command-following in minimally conscious brain injured patients. Archives of Physical Medicine and Rehabilitation, 80(6), Wilson, B.A., Dhamapurkar, S., & Rose, A. (2016). Assessment and treatment of people with a disorder of consciousness: An account of some recent studies. Psychology & Neuroscience, 9(2),

40 TIRR Memorial Hermann and the Memorial Hermann Rehabilitation Network TIRR Memorial Hermann Entities Memorial Hermann Rehabilitation Network Entities 40

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