Specialized Early Treatment for Persons With Disorders of Consciousness: Program Components and Outcomes Shepherd Center From the SelectedWorks of Kathryn Farris October 1, 2013 Specialized Early Treatment for Persons With Disorders of Consciousness: Program Components and Outcomes Ronald T. Seel, Shepherd Center Jennifer Douglas, Shepherd Center Andrew C. Dennison, Shepherd Center Sarah Heaner, Shepherd Center Kathryn Farris, Shepherd Center, et al. Available at: https://works.bepress.com/kathryn-farris/1/ https://www.shepherd.org/ https://works.bepress.com/kathryn-farris/ https://works.bepress.com/kathryn-farris/1/ ORIGINAL ARTICLE Specialized Early Treatment for Persons With Disorders of Consciousness: Program Components and Outcomes Ronald T. Seel, PhD, Jennifer Douglas, MS, CCC-SLP, Andrew C. Dennison, MD, Sarah Heaner, MPH, Kathryn Farris, OTR/L, Catherine Rogers, PhD From the Crawford Research Institute or Brain Injury Program, Shepherd Center, Atlanta, GA. Abstract Objectives: To describe a specialized early treatment program for persons with disorders of consciousness (DOC) that includes family education; to identify rates of secondary conditions, imaging used, and selected interventions; and to evaluate outcomes. Design: A single-center, retrospective, pre-post design using electronic medical record data. Setting: A Commission on Accreditation of Rehabilitation Facilitieseaccredited, long-term acute care hospital that provides acute medical and inpatient rehabilitation levels of care for people with catastrophic injuries. Participants: Persons (NZ210) aged 14 to 69 years with DOC of primarily traumatic etiology admitted at a mean � SD of 41.0�27.2 days postinjury; 2% were in coma, 41% were in the vegetative state, and 57% were in the minimally conscious state. Interventions: An acute medical level of care with �90 minutes of daily interdisciplinary rehabilitation and didactic and hands-on caretaking education for families. Main Outcome Measures: Coma Recovery ScaleeRevised, Modified Ashworth Scale, and discharge disposition. Results: Program admission medical acuity included dysautonomia (15%), airway modifications (79%), infections (eg, pneumonia, 16%; urinary tract infection, 14%; blood, 11%), deep vein thrombosis (17%), pressure ulcers (14%), and marked hypertonia (30% in each limb). There were 168 program interruptions (ie, 139 surgeries, 29 nonsurgical intensive care unit transfers). Mean length of stay � SD was 39.1�29.4 days (range, 6e 204d). Patients showed improved consciousness and respiratory function and reduced presence or severity of pressure ulcers and upper extremity hypertonia. At discharge, 54% showed sufficient emergence from a minimally conscious state to transition to mainstream inpatient rehabilitation, and 29% did not emerge but were discharged home to family with ongoing programmatic support; only 13% did not emerge and were institutionalized. Conclusions: Persons with DOC resulting primarily from a traumatic etiology who receive specialized early treatment that includes acute medical care and �90 minutes of daily rehabilitation are likely to show improved consciousness and body function; more than half may transition to mainstream inpatient rehabilitation. Families who receive comprehensive education and hands-on training with ongoing follow-up support may be twice as likely to provide care for medically stable persons with DOC in their homes versus nursing facility placement. Archives of Physical Medicine and Rehabilitation 2013;94:1908-23 ª 2013 by the American Congress of Rehabilitation Medicine Disorders of consciousness (DOC) are medical conditions that arise from various etiologies in which the duration of impairment may be a brief period (ie, seconds, minutes, or hours), they may be a tran- sient stage of recovery (eg, days or weeks after severe brain injury), or they may be a chronic, stable condition.1 Consensus-based guidelines from the Multi-Society Task Force on Persistent Vege- tative State and the Aspen Workgroup define 3 ascending DOC levels: coma, the vegetative state (VS), and the minimally conscious state (MCS) (table 1).2-4 Persons in coma are unresponsive and unarousable with no spontaneous eye opening, sleep/wake cycles, or observable evidence of self-awareness or environmental aware- ness. 5 In the VS, persons display spontaneous eye opening and sleep/wake cycles, but observable signs of purposeful behavior (eg, language comprehension, behavioral response to stimuli) remain absent.6 In the MCS, persons demonstrate minimal but definitive behavioral evidence of awareness; conscious behavior is often subtle and inconsistent, and must be systematically differentiated from reflexive or random behavior.3,4 For complete DOC guideline criteria and detailed differential diagnostic considerations, sources are available.4,6 The most common causes of DOC in adolescents and adults are traumatic brain injury (TBI) and hypoxic-ischemic encephalopathy; other DOC etiologies include cerebrovascular No commercial party having a direct financial interest in the results of the research supporting this article has conferred or will confer a benefit on the authors or on any organization with which the authors are associated. 0003-9993/13/$36 - see front matter ª 2013 by the American Congress of Rehabilitation Medicine http://dx.doi.org/10.1016/j.apmr.2012.11.052 Archives of Physical Medicine and Rehabilitation journal homepage: www.archives-pmr.org Archives of Physical Medicine and Rehabilitation 2013;94:1908-23 Delta:1_given name Delta:1_surname Delta:1_given name Delta:1_surname Delta:1_given name Delta:1_surname http://crossmark.crossref.org/dialog/?doi=10.1016/j.apmr.2012.11.052&domain=pdf http://dx.doi.org/10.1016/j.apmr.2012.11.052 http://www.archives-pmr.org http://dx.doi.org/10.1016/j.apmr.2012.11.052 injury, central nervous system infections, tumors, poisoning, and neurodegenerative disorders.7 Long-term outcomes for persons with DOC range from moderate to very severe disability and vary based on etiology and early rate of recovery. 7-11 Persons with DOC caused by TBI generally have a better prognosis than persons with other etiolo- gies.7,12,13 Two recent prospective studies14,15 indicate that persons with severe TBI, including persons with DOC, who receive early and continuous rehabilitation beginning in the acute medical level of care have better outcomes than those who do not receive early rehabilitation. Further, prospective longitudinal research16 indicates that persons with DOC caused by TBI who receive early rehabilitation show improved command-following at discharge and improved functional cognition and decreased supervision needs across 1-, 2- and 5-year postinjury follow-up. Given these encouraging findings and considering the long-term health care system costs for very severe disability and nursing facility (NF) placement, it is critical to establish effective, early DOC treatment models after intensive care that can facilitate recovery of consciousness and physical function.17 An effective, early DOC treatment model would likely need to address at least 3 essential aspects of care. First, basic care and secondary medical conditions that emerge or linger after intensive care would need to be managed. 5,18 If not treated successfully, secondary conditions can progress to more serious complications with substantial associated health care costs.12,19 Neurologic complications (eg, hydrocephalus, subdural hematoma, infections) must be detected and treated appropriately to reduce the risk of further disability and NF placement.5,12,19 Dysautonomia (ie, sympathetic storming) is common, can be difficult to treat, and often requires multimodal interventions (eg, environmental modification, medications, intrathecal baclofen [ITB] trial/pump). Persons with DOC are dependent for all basic care activities, often require assistive equipment for feeding and breathing, and have limited self-initiated movement. They are highly susceptible to infections of the respiratory and genitouri- nary systems, which can become chronic, damage organs, or become life-threatening. Inactivity and physical deconditioning increase the risk for developing deep vein thrombosis (DVT) that may require inferior vena cava (IVC) filter placement, and pres- sure ulcers that may require costly muscle flap or skin graft surgeries. Hypertonia in 1 or more limbs is also common; early treatment using multimodal approaches can often manage spas- ticity and prevent contractures, particularly in the lower extremity, and reduce the need for costly tendon-lengthening surgeries. Second, providing accurate assessments of DOC level and treatments to facilitate conscious recovery is critical. Diagnostic errors can have severe adverse consequences for persons with DOC including pessimistic prognoses, reduced access to rehabil- itative treatment when it should be indicated, prolonged treatment when it should be contraindicated, and inappropriate medicolegal judgments or NF placements. 4,6,11,16,20 The American Congress of Rehabilitation Medicine (ACRM) recommends the use of stan- dardized assessment measures with item content that covers consensus-based DOC diagnostic criteria because they provide more sensitive and reliable diagnoses than unstructured approaches.21-25 Clinicians with training and experience with persons with DOC would likely be better able to administer rec- ommended measures, differentially account for diagnostic confounds (eg, intraday fluctuations in arousal; underlying sensory, motor, and/or language deficits; effects of sedating medications), and derive accurate diagnoses. 25 Third, facilitating patients’ safe discharge to a private residence versus an NF placement is critical. When patients are medically stable but do not emerge from DOC, many families desire to care for their loved one at home. Providing comprehensive education, hands-on training, and ongoing programmatic support after discharge helps families with life care planning, identifying and responding to emerging medical conditions, and reducing NF placement. Further, ongoing supports help families manage the emotional burden of care that often includes prolonged grief, anxiety, depression, and social isolation. 26,27 This study describes our efforts to establish a specialized early DOC treatment program for patients and their families, and evaluate the model’s effectiveness. First, we present the program’s components using the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) framework.28 We include data on the types and frequencies of diagnostics, procedures, and program interruptions and their causes (ie, surgeries performed, nonsurgical complications requiring intensive care unit [ICU] transfers). Second, we report data on infections and secondary conditions on admission and acquired during their program stay. Third, we evaluate patients’ functional outcomes including mental, respiratory, hypertonia, skin, and self-care. Global outcomes including emergence into consciousness, length of stay (LOS), charges, and discharge disposition are also reported. Last, we discuss and recommend necessary components for an effective, specialized early DOC treatment model and the benefits for patients, families, and health care system cost avoidance. Methods Participants Consecutive persons with acquired brain injuryerelated DOC admitted over a 6-year period from January 1, 2005, through December 31, 2010, were eligible for inclusion (NZ220). Ten patients who emerged from an MCS and transitioned to traditional List of abbreviations: ACRM American Congress of Rehabilitation Medicine CRS-R Coma Recovery ScaleeRevised CTRS certified therapeutic recreation specialist DOC disorders of consciousness DVT deep vein thrombosis ICF International Classification of Functioning, Disability and Health ICU intensive care unit ITB intrathecal baclofen IVC inferior vena cava LE lower extremity LOS length of stay MAS Modified Ashworth Scale MCS minimally conscious state NF nursing facility OT occupational therapist PT physical therapist SLP speech-language pathologist TBI traumatic brain injury UE upper extremity US ultrasound UTI urinary tract infection VS vegetative state Specialized early treatment for disorders of consciousness 1909 www.archives-pmr.org http://www.archives-pmr.org Table 1 Summary of diagnostic criteria for coma, VS, MCS, and emerged from MCS Condition Description of Consciousness Visual Function Motor Function Auditory Function Communication Coma* Persistent unconsciousness Absence of spontaneous eye opening/ sleep-wake cycle No purposeful responses to environmental stimuli Not present, ie, eyes remain continuously closed Reflexive and postural activity No discrete or localizing responses to stimuli Not present, ie, no startle response to sound Not present, ie, no expressive behavior or language comprehension VSy Persistent unconsciousness Intermittent arousal, ie, periodic spontaneous or stimulus-induced eye opening No sustained, reproducible, purposeful responses to environmental stimuli No voluntary activity Reflexive startle response to visual stimuli Brief, nonpurposeful or reflexive visual fixation Postures or withdraws from noxious stimuli Periodic nonpurposeful or reflexive activity Reflexive startle response to auditory stimuli Brief, reflexive orienting to sound Brief, nonpurposeful or reflexive vocalizations, crying, or smiling No language comprehension MCS z Partial consciousness Inconsistent but clear and reproducible behavioral evidence of awareness of self or environment Inconsistent but clear and reproducible, purposeful responses to environmental stimuli, ie, after simple commands Visual pursuit or sustained fixation in direct response to moving or salient stimuli Reaching for objects that demonstrates a clear relationship between object location and direction of reach Localizing response to noxious stimuli Touching or holding objects in a manner that accommodates the size and shape of the object Vocalizations or gestures that occur in direct response to the linguistic content of comments or questions Intelligible verbalization Gestural or verbal yes/no responses (accuracy not required) Crying, smiling, or laughing in response to the linguistic or visual content of emotional stimuli Emerged from MCS z Full consciousness Consistent behavioral evidence of awareness of self or environment, ie, functional object use or functional interactive communication Reliable, functional object use, ie, appropriate use of at least 2 different items on at least 2 different occasions Reliable, interactive communication, ie, accurate yes- no responses to situational orientation questions * Plum and Posner diagnosis criteria of coma.4 y American Academy of Neurology Multi-Society Task Force definition of the persistent vegetative state. 5 z Aspen Workgroup definition and diagnostic criteria of the minimally conscious state. 6 1910 R.T. Seel et al www.archives-pmr.org http://www.archives-pmr.org rehabilitation within 7 days of admission were excluded. The final sample was 210. All data in this study are from patients’ specialized early DOC treatment stays; that is, data are not re- ported from patients’ ICU or traditional rehabilitation stays. Interventions: specialized early DOC treatment program Overview Our program is designed for patients in VS and MCS, and their families. The program is funded at an acute medical level of care to treat primary and secondary conditions and provide continual skilled nursing (24h/d, 7d/wk) for monitoring and all basic care activities. Acute medical care is augmented with a minimum of 90 daily minutes of interdisciplinary rehabilitation to facilitate functional communication and recovery of consciousness, and provide mobilization therapies (eg, out of bed, daily routine, physical interventions) to promote body function and reduce complications secondary to inactivity and deconditioning. Comprehensive education, hands-on training, and case manage- ment are provided to foster family preparedness for patients’ home discharge. Our DOC program is based at the Shepherd Center in Atlanta, Georgia, which is a medical rehabilitation center that primarily treats persons who have sustained severe acquired neurologic injuries. The center has 152 inpatient beds of which 54 are dedicated to persons with brain injury. The center has onsite ICU and imaging services and is physically connected to Piedmont Hospital, a level II trauma center, which provides efficient access for patients who demonstrate rapid decline and/or require intra- cranial pressure monitoring or invasive procedures. Interdisci- plinary team members include a physiatrist, a nurse, a dietitian, a respiratory therapist, a physical therapist (PT), an occupational therapist (OT), a speech-language pathologist (SLP), a neuropsy- chologist, a certified therapeutic recreation specialist (CTRS), rehabilitation technologist, a family counselor, a case manager, a disability advocacy specialist, and a chaplain. Contract staff includes physicians and medical professionals from neurosurgery, pulmonology, cardiology, internal medicine, orthopedics, and imaging who provide consultations. Admission process Regional access case managers identify potential admissions from intensive and acute care hospitals and coordinate referrals. Admission screening criteria target persons 14 years and older who in the access case manager’s judgment have a DOC based on at least 1 of the following: Rancho level of 1 to 3 or MCS or VS or patient not visually tracking or not following commands. Other admission considerations include families’ interest in having the patient discharged to their home if they do not emerge from an MCS, families’ willingness to participate in education and hands- on training, and payment for services. Payers are typically managed care companies and workers’ compensation. On rare occasions, Medicaid will approve the service. Patients who require intracranial pressure monitoring do not meet our admis- sions criteria. Patients may be admitted to our ICU first or directly to our DOC program. In the first 72 hours after admission, the interdis- ciplinary team extensively assesses the scope and dynamics of persons with DOC care needs. The physiatrist, nurse, and dietitian are among the first to evaluate the patient. Secondary conditions are evaluated, and specialists are consulted as needed. Patients are treated with seizure prophylaxis when indicated using published guidelines.29 Sedating medications are weaned as appropriate. The team establishes daily routines including a nutrition and weight maintenance plan (eg, tube feeding, intravenous nutri- tion, dietary modification), bowel and bladder management, weight shifts and turning schedules, skin care and/or moni- toring, oral hygiene, and improving sleep cycles.30,31 Individu- alized toileting routines (eg, intermittent or continuous catheterization; suppositories) are started early during the stay to promote routine void and movements that can reduce therapy session interruptions. SLPs typically administer the Coma Recovery ScaleeRevised (CRS-R) 24 to 48 hours after admis- sion to allow for sedating medications used on transfer to clear. An OT and a PT evaluate physical function and hypertonia. Pain/ nociception is challenging to assess in the DOC population. When indicative signs are observed, the team uses conservative interventions, which may include positioning, modalities, and nonsedating medications. 32,33 Acute medical management The interdisciplinary team focuses on the treatment and preven- tion of secondary conditions of primarily nervous system, cardiovascular, respiratory, digestive, musculoskeletal, and skin origin. All team members are responsible for monitoring patients for signs of diminished functioning, physiological changes, infections, new or worsening symptoms, or behaviors that could indicate the presence of pain. Imaging tests are used on a case-by- case basis to identify or rule out secondary conditions and inform the treatment plan. Initial treatment approaches are typically conservative. Invasive procedures, ICU transfers, and surgeries are performed when patients’ conditions are deteriorating and have not responded to conservative treatments. With regard to respiratory care, chest x-rays are standard early after DOC program admission. Ventilator weaning is conducted after therapy hours in our ICU, supervised by the attending pul- monologist and implemented by the nursing staff. Telemetry monitoring for vital signs is used for patients with a tracheostomy as well as others at risk should an airway become compromised. Overnight pulse oximetry is used to monitor persons with obstructive sleep apnea and other respiratory conditions to help guide decisions on decannulation. When persons meet criteria, tracheostomy collar weaning involves downsizing the tracheos- tomy and transitioning from heat and moisture exchanger to plugging and then to button if needed before full decannulation. Doppler ultrasound (US) of patients’ lower extremities is standard; upper extremities are tested when indicated. Hemato- logic abnormalities, notably diabetes and sepsis, are screened and treated. With regard to digestive conditions, imaging (eg, kidneys- ureters-bladder radiography, modified barium swallow study, abdominal US/computed tomography) is frequently used, and invasive procedures are performed for feeding tube placements, replacements, or revisions. Neuromusculoskeletal and movement-related imaging tests are common given the traumatic nature of most injuries, the need for fracture management, the discovery of previously undiagnosed fractures, and hypertonia. An interdisciplinary approach is used for the treatment of hypertonia. The Modified Ashworth Scale (MAS) and goniometer for passive range of motion are used to assess symptomatic limbs and serially evaluate intervention effects.34 Serial casting, splinting, and stretching/passive range of motion are routinely used as a first-line treatment for both upper and lower extremities, with casts reapplied every 3 to 5 days.35-39 Specialized early treatment for disorders of consciousness 1911 www.archives-pmr.org http://www.archives-pmr.org Oral medications (eg, dantrolene sodium, baclofen oral suspen- sion) may be used when hypertonia is systemic. Botulinum toxins are used to treat severe or worsening cases; nerve blocks are used primarily as a treatment/diagnostic for contracture severity.39-43 When conservative treatments are ineffective and the risk of contractures becomes high, ITB trials are tested and if the results are encouraging, ITB pumps are placed. Lastly, skin care and pressure ulcer prevention are closely monitored and treated aggressively. 44 Rehabilitative treatments: functional communication and recovery of consciousness The interdisciplinary treatment team uses an integrated approach to deliver rehabilitative treatments with an emphasis on facili- tating recovery of consciousness and improving patient posi- tioning and mobility (table 2). Repetition is frequently used to develop habitual responses. Promoting arousal and interactive communication is interspersed across all therapies and interactions with patients. Stimulant medications, when not contraindicated, are prescribed early in the treatment course. Amantadine hydrochloride is routinely used as a first-line treatment to promote faster recovery of consciousness. 11,45 Amantadine is used alone or in combination with other medications; administration is titrated slowly. The team formally assesses patients with the CRS-R.46,47 SLPs document patient scores weekly. The CRS-R rate of improvement during the first 2 weeks in our DOC program is used as a general benchmark to estimate when the person might emerge from consciousness and to inform discharge planning. The CRS-R is also used to guide treatment interventions. For example, the team identifies the modalities and levels in which the patient is most responsive and then targets therapeutic treatment on behaviors at the next ascending level of difficulty. During therapies, the staff presents repetitive stimulus opportu- nities on intact sensory modalities to increase response consis- tency. Visual sensory stimulation may include use of computer programs, bright objects, pictures of familiar people, and mirrors to reflect their whole body and face. Auditory sensory stimula- tion may include using an iPod a to present familiar sounds, voices, and music. Functional interaction may include command- following, self-care, and functional object use. Tactile stimula- tion may include moving patients to be prone, side lying, or seated on mats. The CTRS introduces music and pet therapies in an attempt to engage recognition and responses from the patient. Multisystem stimulation, when not contraindicated, is routinely used for persons in VS and MCS throughout the DOC program. For example, a person in MCS with some head control might be placed on a tilt table or standing frame while selecting named Table 2 Rehabilitative treatments reported by ICF activities and participation ICF Activities/Participation Assessments Primary Interventions D1. Learning and applying knowledge Basic watching and listening ability; visual and auditory tracking Establishing appropriate environment and reducing distractions Repetition to encourage habitual or conditioned responses D3. Communication CRS-R, level of consciousness Sensory screen Identify intact/effective modes (gestures, vocalizations, verbalizations, eye gaze) Assistive technology consult Medication Multisystem stimulation; sensorimotor stimulation; visual and auditory input; occlusion techniques; amplifiers Augmentative assistive communication devices Cause/effect switch use D4. Mobility Optimal positioning including head, back, arm, and leg supports Seating clinic; specialty cushion, padding Positioning and facilitation (bed and wheelchair); sitting balance Weight-bearing activities; neuromuscular developmental activities/ proprioceptive input Strengthening neck, trunk, extremities; modalities Assistive mobility equipment orientation D5. Self-care Grooming (eg, face washing, hair/teeth brushing); bathing; dressing; eating; toileting; transfers Orientation to activities Appropriate hand and body positioning Functional object recognition and use; hand-over-hand repetitive training D7. Interpersonal interactions & relationships Observation of social interactions Encourage family and friend interaction with patient using optimal communication strategies D9. Community, social, & civic life Observation of patient interactions and the community environment Orientation to community outings; managing (over)stimulation Managing care in community activities (eg, restaurant) NOTE. The ICF activities D2 (general tasks & demands), D6 (domestic life), and D8 (major life areas) do not apply to the DOC population at this level of care. 1912 R.T. Seel et al www.archives-pmr.org http://www.archives-pmr.org Table 3 Family interventions reported by ICF learning activities and environmental factors ICF Activities/Environment Assessments Primary Interventions D1. Learning and applying knowledge Family understanding of DOC and medical conditions Ability and willingness to provide hands-on patient care and management Family preparation for home placement CRS-R assessments, level of consciousness, managing expectations, prognosis Interacting with patient (eg, optimal modes, appropriate content, allowing time to respond), sensory stimulation Bowel and bladder (eg, verbalize program, catheter use, cleaning techniques, suppository use, indicators for medical consult) Skin care (eg, checks, prevention techniques, turn schedule, positioning, wound management) Nutrition/tube feeding (eg, regimen, caloric intake measurement, medications, tube cleaning and maintenance, nutrition adjustments, indicators for medical consult) Respiratory care (eg, CPR, tracheostomy site care, deep suctioning techniques, use of Yankauer tube, clean replace equipment) General medical monitoring (eg, vital signs; seizures, pain management; signs, symptoms of storming) Transfers (eg, lifting body mechanics, positioning, Hoyer equipment, manual use) Hypertonia (eg, PROM exercises, identify spasticity/tone, splint schedule/ application/removal, indicators for medical consult) Other ADLs (eg, bathe, groom, dress, oral care) E1. Products & technology Nutrition and medication needs Assistive technology consult, seating clinic; vehicle evaluation Evaluation of home modifications needed for patient access and basic care Medical care plans (eg, prescription list, nutrition plan, home care instructions from all disciplines) Obtain and maintain appropriate wheelchair, AAC devices, tub/toilet equipment, Hoyer lift, bed Modifications (eg, vehicle, community access, home equipment, structural modifications) E2. Natural environment & human-made changes to environment Evaluation of environmental modifications needed for patient stimulation and rest Managing environment/stimulation/rest to optimize patient behavior and safety E3. Support & relationships Family and personal support system; self-advocacy and patient advocacy Social media (eg, Shepherd Cares page; Facebook), community outreach Personal care and respite arrangements Professional and peer counseling, support groups E4. Attitudes Family and support system attitudes and understanding of DOC Training on communicating needs and expectations to the wider family and community (continued on next page) Specialized early treatment for disorders of consciousness 1913 www.archives-pmr.org http://www.archives-pmr.org objects/people or demonstrating object function during an auto- matic motor activity (eg, brushing teeth, feeding). Rehabilitative treatments: mobilization and activities Initiating patient mobilization and activities helps restore bodily integrity and reduces the risk of complications (eg, infection, DVTs, skin breakdown). 30,48 For patients who reach MCS, increased time is spent on delivering therapies targeted at increased mobility and self-care activities (see table 2). Families identify activities and interests that are familiar to the patient to include in the treatment plan. The interdisciplinary team attempts to engage patients in repetition tasks related to self-care, sitting balance, transfers, and community mobility. Planned rest (ie, back to bed) is scheduled between therapies to lessen fatigue and overstimulation. When patients are medically stable and can tolerate extensive stimulation, the team engages the patient and family in community outings. The combination of hypertonia management, physical therapies, and repetitive self-care activities delivered at the acute medical level of care also facilitates patients’ functional readiness to participate in traditional rehabil- itation, which can lead to more efficient and effective utilization of therapies, shorter rehabilitation stays, and cost savings for the payer. 14,15 Family education Comprehensive education and training is provided to all families, individualized based on each patient’s level of consciousness, secondary conditions, and estimated disposition (table 3). Temporary housing in the center’s 84-unit family living center is provided to facilitate family members’ engagement and partici- pation in education and training. Methods used include didactic classroom training, medical conferences, hands-on training, staff modeling of techniques, train the trainer, and supervised family- led overnight stays in the transitional living apartment and community outings. For medical care topics that may be covered, see table 3. Case management is critical to successful home placement, reduced caregiver burden, and reduced risks of rehospitalization and NF placement.30 Case management helps families to proac- tively anticipate the patient’s needs on return home; identify and coordinate durable medical equipment, assistive technology, and home modification needs; establish instrumental and emotional community supports; and, identify and link families to local medical services. A disability advocacy specialist works with the family to compile, complete, and submit Supplemental Security Income and Social Security Disability Insurance applications as necessary. Discharge planning The case manager coordinates discharge decisions with the treatment team, family, and payer. Criteria for transition to traditional TBI rehabilitation include recovery of consciousness and the ability to participate in 3 hours of rehabilitation. Recovery of consciousness and rehabilitation readiness criteria generally consider functional object use and consistent, accurate functional communication per Aspen Workgroup guidelines.4 For persons who do not emerge from an MCS, staff and family collaboratively decide whether to discharge to the home setting based on the patient’s medical acuity, the family’s ability to provide care, and access to NF placement. LOS is determined on a case-by-case basis in coordination with the family and the payer. The patient’s medical stability and anticipated or actual recovery of consciousness are the primary drivers of LOS. Persons who have not emerged from an MCS and are discharged home typically have a stay of at least 4 to 6 weeks in order to ensure medical stabilization, deliver family education and training, and implement recommendations for assistive technology, durable medical equipment (eg, appropriate wheelchair type, hospital bed, respiratory needs), and home modifications. Postdischarge programmatic support Families who take their loved one with DOC home receive tele- health support biweekly for 3 to 4 months (ie, 6e8 telehealth visits total). Telehealth helps the family to monitor recovery of consciousness including supervising and providing feedback on family administration of the CRS-R. Medical conditions commonly addressed include hypertonia management (eg, the splints no longer fit because of weight gain; improvement or worsening of tone; skin problems) and feeding tube issues (eg, tube is blocked, skin irritation at insertion point, cannot deliver certain medications down the tube, tube is becoming loose). Tel- ehealth also assists with practical issues such as making recom- mendations for easing the burden of patient care or equipment and supply issues (eg, wrong equipment delivered; supplies have not arrived). Telehealth is essential to meet caregivers’ information and communication needs, prevent serious complications, avoid unnecessary emergency department visits, and reduce health care system costs associated with rehospitalizations or NF placement.26,27 Table 3 (continued) ICF Activities/Environment Assessments Primary Interventions E5. Services, systems, & policies Rehabilitation, home or NF discharge plan Support services needs assessment Medical supports (eg, home health care, single service outpatient, follow-up physician appointments) Disability planning (eg, onsite advocacy specialists, life care planning, case management, telehealth) Community resources, services (eg, vendors, transport, counseling) Abbreviations: AAC, augmentative and alternative communication; ADLs, activities of daily living; CPR, cardiopulmonary resuscitation; PROM, passive range of motion. 1914 R.T. Seel et al www.archives-pmr.org http://www.archives-pmr.org Measures The CRS-R46 is a bedside assessment tool for differentiating levels of consciousness. It is composed of 6 subscalesdauditory, visual, motor, oromotor/verbal, communication, and arousald with 23 dichotomously scored items.47 The item content of the CRS-R allows for tabulating a total score of 0 to 23, identifying ascending levels of conscious behavior/ability, and using a combination of items to differentiate VS from MCS from emerged from an MCS based on The Multi-Society Task Force on Persistent Vegetative State and Aspen Workgroup criteria.46 An ACRM practice parameter recommends use of the CRS-R based on its standardized administration and scoring procedures, item content, and interrater and test-retest reliability.25,46,49 The MAS is a 6-point rating scale that is used to assess muscle spasticity, with ratings from 0 (“no increase in muscle tone”) to 4 (“affected part rigid in flexion or extension”).50 The MAS measures muscle resistance in velocity-dependent movements, passive joint range of motion, and muscle strength. The MAS has acceptable interrater reliability and has been used as a primary outcome measure in hypertonia clinical trials.36,51 Skin breakdown (ie, pressure ulcers) was recorded based on wound consult reports and coded in the medical record as stage 2, 3, or 4 based on standard protocol.44 Self-care activities assessed throughout the stay are face washing, hair brushing, dressing upper extremity, eating, teeth brushing, bathing, dressing lower extremity, and toileting. Ther- apists use 4 rating categories to denote patients’ level of depen- dence (ie, dependent, maximum assist, moderate assist, minimum assist). Charge data were electronically pulled from hospital admin- istrative data for the dates in which patients were treated in our DOC program and include all billable charges (eg, daily rates, procedures, medications). Data represent actual charges without time value of money or inflation adjustments. Data collection The study design is a single-center, retrospective, pre-post analysis of patients’ DOC program stays using standardized variables in the electronic medical record data supplemented with abstraction of select data variables from text located in either electronic or paper clinical reports. Families provided consent at admission for deidentified medical record data to be used for research and program evaluation purposes. The host institution’s research review committee approved the study. All data were collected from the electronic and paper medical records by 4 trained abstractors. Data prospectively recorded in the electronic medical record include weekly CRS-R scores, respiratory function, MAS, and self-care activities. Demographics, injury type, days from injury to program admission, LOS, payer, discharge disposition, diagnostic imaging, surgeries, procedures, nonsurgical interrup- tions, pressure ulcers, and infections data were abstracted from the electronic or paper medical record. Ninety-six percent of admission CRS-R scores were rated within 4 days of DOC program admission. If the CRS-R discharge evaluation was not completed (nZ60) and the last available score was rated more than 4 days before discharge, then an SLP (J.D.) reviewed the discharge clinical notes to determine whether there was definitive behavioral evidence of improvement or decline between the last CRS-R rating and discharge. CRS-R discharge scores for 18% of the sample (nZ38) reflect behavioral evidence from the discharge clinical notes. Statistical analyses All data entry and analyses were conducted using the SPSS version 15.0.b Descriptive statistics were calculated for patient and injury characteristics, imaging, on-floor procedures, ICU transfers, surgeries, infections, CRS-R subscale and total scores, respiratory functioning, MAS scores, skin breakdown, and self-care activities. Wilcoxon signed-rank tests were calculated to compare DOC program admission and discharge scores on ordinal-based measures including CRS-R subscales, MAS, and self-care activity scores. Findings were considered statistically significant using an alpha level of P<.05. Table 4 Patient characteristics (NZ210) Characteristics Values Age (y) 28.1�13.0 Sex (men) 70 Race White 80 Black/African American 14 Unknown/other 6 Hispanic ethnicity 5 Health insurance payer Managed care 71 Workers’ compensation 21 Military/Tricare 5 Self-pay 1 Medicaid 1 Primary brain injury type Traumatic 86 Vehicular (76) Falls/flying objects (11) Violence (6) Pedestrian (4) Sports (3) Other (1) Anoxic 12 Cerebrovascular accident/other acquired 2 Transferring facility level of care Acute care 88 Long-term acute care hospital 10 Other (eg, NF, VAMC, home) 2 Initial admission level of care ICU 34 Specialized DOC program 66 Days postinjury at DOC program admission 41.0�27.2 8e21 19 22e28 22 29e91 52 92e171 7 Level of consciousness Coma 2 VS 41 MCS 57 NOTE. Values are mean � SD or percentages. Abbreviation: VAMC, Veterans Affairs Medical Center. Specialized early treatment for disorders of consciousness 1915 www.archives-pmr.org http://www.archives-pmr.org Results Patient and injury characteristics Patient and injury characteristics are described in table 4. The sample was predominately young (mean age � SD, 28.1�13.0y), men (70%), and white (80%) who almost exclusively had commercial payers (98%). Most (76%) sus- tained a traumatic etiology secondary to motor vehicle colli- sions, and 81% were admitted >21 days postinjury. Based on the CRS-R, 2% were in a coma, 41% were in VS, and 57% were in MCS. Imaging, primary acute medical treatments, and program interruptions In our sample of 210, secondary conditions led to 139 inter- ruptions for surgeries and an additional 29 interruptions for nonsurgical transfers to intensive care settings. Overall, 40% of patients (nZ84) had at least 1 DOC program interruption attributable to surgery (37%), a nonsurgical ICU transfer (9%), or both (6%). Twenty-three percent had program interruptions (ie, 5% nonsurgical ICU transfer, 18% surgery) because of neurologic complications. Additionally, 8% were transferred to Table 5 Number of imaging studies and treatments reported by ICF functions and structures ICF Functions and Structures Total No. % Patients Mental/nervous system imaging/diagnostics Brain/head: CT (94), MRI (46), EEG (45) 185 57 ICU transfer, N-S Fever/storming 6 3 Seizure 3 1 Hydrocephalus 2 1 Surgeries Cerebral shunts: VP (10), VP revision (4), LP (1) 15 7 Puncture: lumbar (11), dural (1) 12 5 Subdural hygroma drainage 3 1 Cranioplasty 3 1 Abscess drainage/debridement 2 1 Nerve decompression 2 1 Cervical arachnoid cyst 1 <1 Sensory Systems Surgery Eye surgery 1 <1 Cardiovascular, hematologic, immunologic, & respiratory systems Imaging Chest: x-ray (520), CT (1) 521 73 DVT lower extremity, Doppler US 182 71 DVT upper extremity, Doppler US 69 24 Bronchoscopy/laryngoscopy* 28 10 Cardiovascular: ECG (26), carotid, artery US (2) 26 10 Procedures Blood transfusion 12 4 Intubation 1 <1 ICU transfer, N-S Cardiovascular 8 4 Respiratory 8 4 Sepsis 1 <1 Surgeries Tracheal resection, excision of stenosis 6 3 IVC filter placement 3 1 Other (ie, tracheotomy, chest tube, arterial) 3 1 Digestive, metabolic, & endocrine systems Imaging KUB/abdominal: x-ray (74), US (13), CT (9) 96 27 Modified barium swallow study 17 8 Endoscopy (4), FEES (4) 8 4 Feeding tube NOS 5 2 Surgeries Feeding tube placement/revision 32 12 Abdominal (ie, GI, Ex-Lap, bone flap removal) 3 1 Genitourinary & reproductive systems Imaging Genitourinary: US (6), CT (1) 7 3 ICU transfer, N-S Renal failure 1 <1 Table 5 (continued) ICF Functions and Structures Total No. % Patients Neuromusculoskeletal & movement- related systems Imaging Extremities/hips: x-ray (269), CT (3), MRI (3) 275 56 Spine: x-ray (91), MRI (9), CT (6) 106 31 Skull/facial/jaw: x-ray (18), CT (4) 22 9 EMG 5 2 ITB pump dye study 3 1 Procedures Botox injection 78 36 Baclofen trial 52 23 Nerve block (phenol, 10; marcaine, lidocaine, 9) 19 9 Surgeries ITB pump placement 30 14 Hardware removal 9 4 Achilles’ tendon lengthening 5 2 Other: orthopedic, skull, laminectomy 3 1 Skin & related structures Surgeries Skin flap surgery 6 3 Abbreviations: CT, computed tomography; ECG, electrocardiogram; EEG, electroencephalogram; EMG, electromyogram; Ex-Lap, exploratory laparotomy; FEES, fiberoptic endoscopic evaluation of swallowing; GI, gastrointestinal; KUB, kidneys-ureters-bladder; LP, lumbar-peritoneal; MRI, magnetic resonance imaging; N-S, nonsurgical; NOS, not other- wise specified; VP, ventriculoperitoneal. * FEES swallow studies evaluate vocal cords (voice) and swallow (digestive); bronchoscopies/laryngoscopies/evaluate vocal cords (voice) and airway for obstruction (respiratory). 1916 R.T. Seel et al www.archives-pmr.org http://www.archives-pmr.org the ICU for cardiovascular or respiratory complications, while 6% had surgery (eg, tracheal complications, IVC filter place- ments). Thirteen percent had feeding tube placements or revisions, or other abdominal surgeries. Neuromuscular procedures and surgeries predominately focused on extracra- nial injuries sustained in motor vehicle collisions and hyper- tonia management. Six patients had skin flap surgeries. A summary of all patient imaging tests and medical treatment received for common secondary conditions (ie, procedures, ICU transfers for nonsurgical treatment, and surgeries) is presented in table 5. Infections, positive cultures The frequency of infections and positive cultures is shown in table 6 along with the proportions of infections that were caused by antibiotic-resistant bacteria. Notable infections at admission include pneumonia (16%), urinary tract infection (UTI, 14%), blood (11%), and cerebrospinal fluid and brain (3%). With the exception of UTI, the frequency of new infections or positive cultures was markedly less during their DOC program stay. Mental function outcomes CRS-R admission and discharge subscale scores are reported in table 7. At the time of admission, 2% of patients were unarous- able, 51% had no visual fixation or pursuit, and 73% had abnormal motor reactivity. Further, 78% of patients had CRS-R total scores �10. Persons with DOC showed improvement (P<.001) from admission to discharge on all 6 subscales. At discharge, 53% emerged from MCS based on the Aspen criteria for functional object use (19%), accurate functional communication (8%), or meeting both criteria (26%). Body function and structures At admission, 79% were admitted with modifications to their airway including 57% with a tracheotomy collar, 14% with a tracheotomy hygroscopic condenser, 3% with a tracheostomy plug, and 5% receiving mechanical ventilation. Improved respi- ratory status (P<.001) was observed at discharge; 67% were within normal limits without modifications, while 3% still required mechanical ventilation. Table 6 Infections, positive cultures at admission and acquired during stay (NZ210) Infection Location and Bacterial Resistance % Admit % Acquired Body System Any infection 58 41 Respiratory Upper respiratory 30 12 Pneumonia 16 1 UTI 14 33 Blood 11 4 Stool 4 5 CSF, brain 3 1 Wound, skin 2 5 Ear, eye 1 3 Antibiotic-Resistant Bacteria Any resistant bacteria 31 16 MRSA 21 5 Pseudomonas (resistant) 7 3 Acinetobacter (resistant) 6 1 VRE 5 2 Clostridium difficile 3 5 Klebsiella (ESBL) 1 1 Klebsiella (resistant/KPC) 1 0 Escherichia coli (ESBL) 0 1 E coli (resistant) 0 1 Abbreviations: CSF, cerebrospinal fluid; ESBL, extended-spectrum beta- lactamase; KPC, Klebsiella pneumoniae carbapenemase; MRSA, methicillin-resistant Staphylococcus aureus; VRE, vancomycin-resistant enterococci. Table 7 Mental function outcomes based on the CRS-R (NZ210) CRS-R Scales/Items % Admit % DC P Auditory <.001 0 None 17 2 1 Auditory startle 41 20 2 Localization to sound 27 17 m 3 Reproducible move to command 15 23 m 4 Consistent move to command 1 39 Visual <.001 0 None 25 9 1 Visual startle 26 7 m 2 Fixation 17 7 m 3 Visual pursuit 24 20 m 4 Object localization: reaching 7 16 m 5 Object recognition 0 41 Motor <.001 0 None/flaccid 16 3 1 Abnormal posturing 28 12 2 Flexion withdrawal 29 19 m 3 Localization to noxious stimulation 14 6 m 4 Object manipulation 9 7 m 5 Automatic motor response 4 9 e 6 Functional object use 0 44 Oral motor/verbal <.001 0 None 8 0 1 Oral reflexive movement 73 28 2 Vocalization/oral movement 18 43 m 3 Intelligible verbalization 1 29 Communication <.001 0 None 90 40 m 1 Nonfunctional: intentional 10 26 e 2 Functional: accurate 0 34 Arousal <.001 0 Unarousable 2 1 1 Eye opening with stimulation 54 16 2 Eye opening without stimulation 42 46 3 Attention 1 37 NOTE. All admit versus discharge comparisons based on Wilcoxon signed-rank test. Percentages may not add to 100% because of rounding. Abbreviations: DC, discharge; e, behavioral indicator of emergence from MCS based on Aspen Workgroup criteria; m, behavioral indicator of MCS based on Aspen Workgroup criteria. Specialized early treatment for disorders of consciousness 1917 www.archives-pmr.org http://www.archives-pmr.org At admission, 10% had an upper extremity (UE) DVT, and 7% had a lower extremity (LE) DVT. During their stay, 8% acquired a UE DVT, and 7% acquired an LE DVT. With regard to the skin, 14% (nZ30) were admitted with pressure ulcers: stage 2 (nZ17), stage 3 (nZ10), and stage 4 (nZ3). One patient acquired a pres- sure ulcer (stage 2) during the program. At discharge, 60% (nZ18) of admission pressure ulcers were healed. Thirteen patients were discharged with pressure ulcers at stage 2 (nZ6) and stage 3 (nZ7). Excluding persons with flaccid tone, admission and discharge MAS scores for each extremity are reported in table 8. Overall, 45% of patients (nZ208) had marked hypertonia in at least 1 extremity at admission. At discharge, patients showed improved hypertonia in their right UE (PZ.010) and left UE (PZ.002). No improvement or worsening of hypertonia was shown at discharge for the LE. Self-care activities and transfers Admission and discharge self-care activity and transfers ratings are reported in table 9. At admission, almost all patients were dependent on self-care activities and transfers. At discharge, patients made improvements in all activities except for toileting. Patients were most able to provide modest levels of assistance on face washing (35%), hair brushing (26%), UE dressing (20%), and teeth brushing (17%). Discharge level of consciousness, LOS, charges, and disposition Patients’ discharge levels of consciousness and associated stays, charges, and dispositions are reported in table 10. Overall, 26% of persons emerged from an MCS based on both Aspen criteria, and another 27% emerged based on 1 of 2 criteria. About 12% remained in VS at discharge. The mean Table 8 Hypertonia outcomes based on the MAS MAS Ratings by Extremity % Admit % DC P RUE (nZ182) .010 0 Normal tone 30 32 1 Slight increase; min resist at end range 32 38 1þ Slight increase; min resist through ROM 9 10 2 Marked increase through ROM 20 14 3 Considerable increase; movement difficult 9 5 4 Rigid in flexion or extension 1 <1 LUE (nZ184) .002 0 Normal tone 31 34 1 Slight increase; min resist at end range 31 35 1þ Slight increase; min resist through ROM 11 11 2 Marked increase through ROM 16 16 3 Considerable increase; movement difficult 10 4 4 Rigid in flexion or extension <1 0 RLE (nZ196) .291 0 Normal tone 32 27 1 Slight increase; min resist at end range 32 33 1þ Slight increase; min resist through ROM 9 12 2 Marked increase through ROM 19 19 3 Considerable increase; movement difficult 7 8 4 Rigid in flexion or extension 2 <1 LLE (nZ198) .212 0 Normal tone 27 23 1 Slight increase; min resist at end range 36 38 1þ Slight increase; min resist through ROM 10 12 2 Marked increase through ROM 18 17 3 Considerable increase; movement difficult 7 8 4 Rigid in flexion or extension 1 1 NOTE. Admit versus discharge MAS comparisons based on Wilcoxon signed-rank test; persons with hypotonic/flaccid limbs were not included in the analysis. Abbreviations: DC, discharge; LLE, left lower extremity; LUE, left upper extremity; min, minimal; RLE, right lower extremity; ROM, range of motion; RUE, right upper extremity. Table 9 Self-care activities outcomes Activities, Ratings % Admit % DC P Face washing (nZ204) <.001 Dependent 94 65 Maximum assist 5 21 Moderate assist 1 8 Minimum assist 0 6 Hair brushing (nZ203) <.001 Dependent 95 74 Maximum assist 4 16 Moderate assist 1 6 Minimum assist 0 3 DressingeUE (nZ203) <.001 Dependent 98 80 Maximum assist 1 14 Moderate assist 1 5 Minimum assist 0 1 Eating (nZ88) .014 Dependent 100 91 Maximum assist 0 7 Moderate assist 0 1 Minimum assist 0 1 Teeth brushing (nZ87) .001 Dependent 100 83 Maximum assist 0 11 Moderate assist 0 5 Minimum assist 0 1 Bathing (nZ87) .002 Dependent 100 87 Maximum assist 0 13 DressingeLE (nZ88) .014 Dependent 100 93 Maximum assist 0 7 Toileting (nZ88) .157 Dependent 99 97 Maximum assist 1 3 Transfers (nZ208) <.000 DependenteHoyer 97 77 Dependentemanual 2 10 Maximum assist 1 8 Moderate assist 0 4 NOTE. Admit versus discharge self-care comparisons based on Wilcoxon signed-rank test. Abbreviation: DC, discharge. 1918 R.T. Seel et al www.archives-pmr.org http://www.archives-pmr.org LOS was 39.1 days (range, 6e204d), and the mean charge was $151,732. Fifty-four percent transitioned to traditional inpa- tient rehabilitation, while 29% were discharged home with family and programmatic support; 13% were discharged to an NF. Persons who emerged from MCS had a shorter LOS, less charges, and were far more likely to transition to traditional inpatient rehabilitation. Discussion There is considerable debate regarding the treatment needs of persons with DOC and the optimal clinical care and setting to improve outcomes and reduce the risk of long-term severe disability and institutionalization.52 Only 2 studies12,19 were identified that provided incidence data on DOC medical acuity after intensive care within 3 months of onset. Our study replicates and extends the evidence base that persons with DOC caused primarily by a traumatic etiology have widespread secondary conditions that occur at fairly equivalent incidence rates compared with previous study results (noted in parentheses in italics) and include the following: 1. Neurologic: 73% abnormal motor reactivity, 25% dysautono- mia/storming; 3% cerebral infections; 5% ICU nonsurgical transfers; and 15% cerebral shunts/revisions, punctures, and drains (71% abnormal motor reactivity,12 37% and 63% fever of central origin,12,19 and 16% cerebral shunts12) 2. Respiratory: 74% requiring decannulation, 5% requiring ventilator weaning, 17% pneumonia, 4% nonsurgical ICU transfers, and 4% tracheal surgeries (92% and 77% tracheos- tomies 12,19 and 30% pneumonia 19 ) 3. Cardiovascular: 17% UE DVT, 15% LE DVT, 4% nonsurgical ICU transfers, 1.5% IVC placement, and 1% arterial surgery 4. Digestive: 100% enteral feeding, 100% bowel management, 47% UTI, and 12% feeding tube revisions or replacements (100% enteral feeding,19 100% bowel management,19 and 53% UTIs19) 5. Hypertonia: 45% marked hypertonia, ie, MAS�2, in at least 1 limb; serial casting first-line treatment; 36% botulinum toxin A; 23% ITB trial; 9% nerve blocks; 14% ITB pump place- ments; and 2.5% tendon-lengthening surgeries (93% consid- erable hypertonia, ie, MAS�3, in at least 1 limb19) 6. Skin: 14% admitted with stage 2 to 4 pressure ulcers, 3% skin flap surgeries In our sample of 210 patients, 40% had at least 1 DOC program interruption because of either surgery or a nonsurgical ICU transfer. These data are consistent with DOC specialty program data from an acute setting in which 40% of patients also required transfer to an acute facility for temporary management of medical issues such as sepsis, status epilepticus, neurologic procedures, and/or deterioration.19 Despite high medical acuity coupled with low levels of conscious functioning at admission, our study provides evidence that persons treated in a specialized early DOC acute medical level of care program with �90 minutes of daily rehabilitation showed improvements in arousal; auditory, visual, and motor response; verbalization and functional communication; respiratory airway function; right and left UE hypertonia; pressure ulcers; and in their ability to assist with face washing, hair brushing, UE dressing, teeth brushing, and transfers. At discharge, 53% showed 1 or more signs of emergence into full consciousness, which replicates the 54% emergence rate reported by Groswasser and colleagues in a sample of 134 patients with disordered consciousness of 30 or more days.12 Consistent with the literature, persons who emerged from MCS at discharge were more likely to have a traumatic etiology, higher admission CRS-R total scores, and fewer days postinjury than persons discharged in VS.7-13 Our study also provides evidence that 54% of persons treated in an early specialized DOC treatment program had sufficient medical stabilization and recovery of consciousness to transition to mainstream inpatient rehabilitation care, where they likely had further short- and long-term functional recovery and reduced disability. 16 Persons who did not emerge were 2.25 times more likely to be discharged home with family members (29%) than to an NF. Importantly, only 13% of persons receiving early specialized DOC treatment were institutionalized at discharge. This discharge to home versus NF ratio translates into significant long-term cost avoidance to the health care system. Also, persons in a specialized early DOC treatment program had no deaths and very low rates of severe secondary conditions (eg, only 1 acquired pressure ulcer [stage 2], only 7 discharged who required mechanical ventilation, and only 2 with grade 4 hypertonia), which further translates into health care system cost avoidance and reduced risk of litigation. Based on our findings, previous study results, and consensus- based recommendations in the literature, 4,30,48,53-56 we summarize 6 essential standards of care for effective, early treatment of DOC (table 11). For each standard, we summarize primary patient- and Table 10 Specialized DOC Program LOS, costs, and disposition reported by discharge Aspen consciousness levels (NZ210) Discharge Aspen Level % Etiology Admit Admit DOC Program Disposition Trauma CRS-R DPI LOS (d) Charges* ($) IR Home NFy Medz All levels 100 86 7.5�3.7 41.0�27.2 39.1�29.4 151,732�154,018 54 29 13 4 Emerged, 2 criteria present 26 94 8.9�3.3 28.3�15.8 25.6�21.7 89,040�79,580 96 0 0 4 Emerged, 1 criterion present x 27 87 8.5�4.1 40.5�19.5 33.5�21.6 116,899�93,530 82 9 7 2 MCS 35 87 6.9�3.3 46.0�28.3 48.9�34.8 200,051�190,591 22 60 14 4 VS 12 62 4.4�2.3 54.0�43.4 51.7�27.6 215,693�190,029 0 46 39 15 NOTE. Values are mean � SD or percentages. Abbreviations: DPI, days postinjury; IR, traditional inpatient rehabilitation program; Med, medical. * Charges based on nZ208. y Includes skilled nursing, assisted living, and personal care residential facility. z Medical level of care and includes acute care, Veterans Administration program not specified, and long-term care hospital. x nZ39 met functional object use criteria; nZ17 met functional/accurate communication emergence criteria. Specialized early treatment for disorders of consciousness 1919 www.archives-pmr.org http://www.archives-pmr.org family-centered outcomes and potential health care system bene- fits gained from early specialized DOC treatment in comparison with suboptimal care. For example, there are wide-ranging bene- fits to early and aggressive treatment of hypertonia, in addition to avoiding contractures and the associated high costs of tendon release surgeries. If the patient emerges from an MCS and tran- sitions to traditional inpatient rehabilitation, the patient with managed tone will be able to participate in and benefit from an array of upper and lower extremity rehabilitation therapies related to self-care activities and transfers that would not be possible with marked tone.57 Improved rehabilitation readiness results in better utilization of the rehabilitation benefit (eg, not spending the first 3wk on functioning vs. tone management) and health care system cost savings. If the patient does not emerge from an MCS, well- managed hypertonia increases the likelihood that the family will be willing and able to manage the patient at home by reducing caregiver burden related to patient transfers, hygiene, and dressing, as well as distress related to the physical appearance of Table 11 Primary patient-centered outcomes and health system benefits of DOC specialty programs Recommended Standards of Care Patient-Centered Outcomes/Benefits Health Care System Outcomes/Benefits 1. Optimal medical environment including: a. Medical professionals with training and experience in DOC to establish the diagnosis and coordinate clinical treatment b. Interdisciplinary team integrated in the assessment and treatment of all functions c. Onsite access to imaging, pulmonol- ogy, cardiology, neurosurgery, ortho- pedics, wound/ostomy, and ICU services Accurate diagnosis of level of consciousness, prognosis, and improved recommendations for treatment Early detection/assessment/treatment of severe secondary brain complications and infections Ventilator and tracheostomy collar weaning and early detection/treatment and prevention of aspiration and respiratory infection Reduced diagnostic errors, inappropriate referrals, and inappropriate medical- legal decisions Reduced risk of mortality, extended hospitalization, and long-term severe disability due to late identification and response to complications Reduced operational costs of ICU transfers, hospital stays, and associated costs 2. Prevent and treat secondary conditions (eg, dysautonomia, hypertonia) Detection/prophylaxis/treatment of severe cardiovascular complications (eg, DVT) Detection/treatment/prevention of skin breakdown Improved limb functioning; prevention of tone-related complications (eg, contractures, reduced incidence and severity of skin breakdown) Reduced risk of mortality, extended hospitalization, and long-term severe disability Reduced risk of contracture and skin surgical costs Improved rehabilitation readiness and utilization 3. Maintain bodily integrity (eg, nutrition, oral and physical hygiene, skin care, infection prevention and treatment; bowel and bladder management) Improved nutrition management and prevention of malnutrition and muscle wasting Improved bowel and bladder management; prevention/early detection of infections/complications; reduced skin breakdown Reduced rehospitalization and associated costs Reduced renal insufficiency and skin-/wound-related rehospitalization and costs Improved rehabilitation readiness and utilization 4. Facilitate functional communication and environmental interaction (eg, pharma- cologic intervention, environmental stimulation) Improved arousal, consciousness, and identification of intact sensory and communication modes Reduced risk of institutionalization and long-term severe disability; improved utilization of specialized DOC program and rehabilitation services 5. Establish functional mobility (eg, postural/positioning, stretching and ROM, movement swallowing); promote self-care activities Improved mobility, positioning, and strengthening; prevention of complications (eg, skin) Improved self-care activities Improved rehabilitation readiness and service utilization Reduced risk of skin/wound surgical costs 6. Provide family education and support including: a. Medical information and hands-on personalized training b. Case management for life planning, products, DME, technology, commu- nity supports, and local medical services c. Disability advocacy for financial counseling d. Postdischarge programmatic support Improved family management of DOC secondary conditions in the home and community including application of bladder and bowel program, medication administration, transfers, respiratory and nutrition programs, and identification of recovery or emergent complications Improved community support and long-term success related to financials (SSI/SSDI; medical support) Reduced risk of mortality, institutionalization, rehospitalization, and associated costs Improved identification of rehabilitation readiness and service utilization Abbreviations: DME, durable medical equipment; ROM, range of motion; SSDI, Social Security Disability Insurance; SSI, Supplemental Security Income. 1920 R.T. Seel et al www.archives-pmr.org http://www.archives-pmr.org hypertonic limbs. Family members report treatment satisfaction and reduced burden when improvement is observed in physical function (eg, head control, reduced hypertonia, assistance with transfers) as well as communication (eg, eye contact, visual tracking, indications of approval/disapproval, communication device use) and behavior/mood (eg, smiling, decreased “agitation”).55 The importance of establishing an early standard of care for persons with DOC is critical given the federal government’s increasing emphasis on narrowing health access disparities and providing patient- and family-centered care. There remains significant disparity in access to extended acute medical and early rehabilitative treatments for persons with DOC because of inten- sive care system knowledge of prognosis and treatment options, specialized program availability, and third-party payer policies.52 After intensive care, many persons with DOC are transferred to an NF.52 This is consistent with adult trauma population data in which only persons aged 18 to 30 years were more likely to be discharged to an inpatient rehabilitation facility than an NF.58 Adult trauma patients discharged from intensive medical settings directly to an NF have substantial increased risks of mortality compared with discharge to rehabilitation and other settings across all adult age groups, even after controlling for severity indices including discharge functional status, brain injury severity, admission injury severity, mechanism of injury, Charlson Comorbidity Index score, and LOS.57 Other intensive care longitudinal studies59-61 that have also controlled for severity have reported similar high risks of mortality when patients are dis- charged directly to an NF, but it is unclear to what extent this risk is a surrogate marker of unmeasured severity, premature discharge for services, or difficulty providing the appropriate level of care. Given our research findings, it is difficult to envision a stand- alone NF providing optimal care to persons with DOC at least within the first 3 to 4 months postinjury. Adults with DOC tend to be traumatically injured, require mechanical ventilation during their intensive stay, and have very high rates of secondary conditions early after injury, the very factors that place persons at risk for mortality in a skilled NF. It is unlikely that a standalone NF would possess or have immediate access to the level of specialization required to manage medical acuity including dys- autonomia, cerebral swelling, decannulation, tracheal complica- tions, pneumonia, UTIs, sepsis, DVT monitoring, hypertonia treatment, and pressure ulcers. It would also be difficult for an NF to operationally manage frequent, unplanned offsite transfers to acute settings for diagnostic tests or invasive interventions for these conditions. Lack of training and infrequent experience with persons in DOC would provide challenges for NF clinical staff when assessing consciousness, differentially accounting for diag- nostic confounds, and observing and interpreting subtle changes that might indicate the presence of a serious condition. Future research on specialized early DOC treatment programs should examine long-term impacts, cost-effectiveness, and prediction models that match subgroups of patients with the most effective level and setting of care. Study limitations There are limitations to inferences that can be made from our pre- post study design when attributing patient improvement to treat- ment program effects. Previous research62-64 suggests that hypertonia and pressure ulcers are unlikely to improve, and often worsen, without intervention. Therefore, it is reasonable to infer from our data that treatment contributed to improved UE tone, prevention of contractures, pressure ulcer healing, and prevention of new pressure ulcers. While natural recovery likely plays a significant role in recovery of consciousness, treatment in a specialty DOC program appears to contribute at least a small to moderate effect related to using effective interventions such as neurostimulants (ie, amantadine). Given that there is significant variation in our outcomes (ie, there is a mix of good and subop- timal outcomes reported), there should be only minor concerns related to expectation bias. Further, many outcomes were assessed by trained clinicians using measures with standardized adminis- tration and scoring procedures, minimizing measurement error attributable to reliability. Lastly, using the discharge clinical note to impute 14% of CRS-R discharge scores likely reflects behav- ioral observations made over a more extended time interval than from a single CRS-R administration that uses a more restricted time interval. Conclusions Persons with DOC remain at a high level of medical acuity after intensive care, which should be considered in order to make appropriate early discharge placements. Persons with DOC caused primarily by a traumatic etiology who are treated in a specialized early treatment program that includes acute medical care and �90 minutes of rehabilitation daily show improvement in all aspects of conscious functioning, respiratory function, UE hypertonia, pres- sure ulcers, and self-care activities. More than half may be tran- sitioned to mainstream inpatient rehabilitation programs. Lastly, families who are provided comprehensive education and hands-on training with follow-up support are likely willing and able to provide care for medically stable persons with DOC in their home. Suppliers a. Apple Inc, 1 Infinite Loop, Cupertino, CA 95014. b. SPSS Inc, 233 S Wacker Dr, 11th Fl, Chicago, IL 60606. Keywords Brain injuries; Diagnosis; Prognosis; Rehabilitation; Vegetative state Corresponding author Ronald T. Seel, PhD, Shepherd Center, Crawford Research Insti- tute, 2020 Peachtree Rd, Atlanta, GA 30309. E-mail address: ron_ seel@shepherd.org. References 1. Bernat JL. Chronic consciousness disorders. Annu Rev Med 2009;60: 381-92. 2. American Congress of Rehabilitation Medicine. Recommendations for use of uniform nomenclature pertinent to persons with alterations in consciousness. Arch Phys Med Rehabil 1995;76:205-9. 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