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Exploration of Function and Identity after SCI

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1 Exploration of Function and Identity after SCI
Raheleh Tschoepe MS, OT/L UNC Health Care Inpatient Rehabilitation Unit SCI Team November 3, 2012 Raheleh Handout: slides Levels Padding/positioning SCI Educational Resources

2 Objectives By the end of this session, you will have basic understanding of: Incidence and etiology of SCI in the U.S. SCI injury levels, syndromes and the ASIA Classification System – what do they tell us? How an interdisciplinary therapy team can maximize functional independence How to recognize, prevent and address potential barriers to progress across the continuum of care OT evaluation and treatment procedures, discharge planning and integration into interdisciplinary treatment Function and identity as guides to treatment planning Raheleh

3 Statistics Incidence: 12,000 new cases each year
Prevalence: ~265,000 persons in the U.S. living with SCI Age : years old Since 2005: 40.7 years old Gender: 80.7 % reported have been male

4 Etiology MVC: 40.4% Falls: 27.9% Violence: 15.0% (gunshot wounds)
Sports: 8.0% Non-traumatic: 8.0% (disease, infection, congenital disability) Sports Falls

5 Neurological Levels Incomplete tetraplegia (39.5%)
Complete paraplegia (22.1%) Incomplete paraplegia (21.7%) Complete tetraplegia (16.3%) ASIA A - No sensory or motor function is preserved in the sacral segments S4-S5 No anal sensation or contraction ASIA B - Sensory, but not motor, function is preserved below the neurological level Must include the sacral segments S4-S5. ASIA C - Sensory or motor function is preserved in the S4/S5 segments Must have either: voluntary anal sphincter contraction sacral sensation plus sparing of motor function more than 3 levels below the motor level More than half of the muscle grades below the single neurological level are < 3 ASIA D - Sensory or motor function is preserved in the S4-S5 segments. sparing or motor function more than 3 levels below the motor level At least half of muscle grades below the single neurological level are > or = 3 ASIA E -Sensory and motor function are normal Persistent hyperreflexia does not negate this classification

6 Length of stay and discharge
Acute care days Inpatient Rehab – 37 days (greater for people with complete injuries) 89.9% discharge to a private residence 6.2% discharge to nursing homes Is it enough to discharge at a “supervision” level?

7 More than a number… "I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles. “ -Christopher Reeve

8 Exploring Function

9 Occupational Therapy Practice Framework
Occupational therapy is: “..the application of an intervention process that facilitates engagement in occupation to support participation in life…” Occupational therapists and occupational therapy assistants: “focus on assisting people to engage in daily life activities that they find meaningful and purposeful.”

10 Exploring Independence

11 OT’s Role Carolyn Baum defines independence as the ability to take responsibility for one's own role performance, needs and desires. In order to acknowledge the variety of ways individuals accomplish the necessary and desirable tasks in their lives, it is essential to embrace a broad view. The profession recognizes independence as a state of self-determination. Baum, C. M. (2011). The John Stanley Coulter Memorial Lecture. Fulfilling the promise: Supporting participation in daily life. Archives of Physical Medicine and Rehabilitation, 92(2), Former 2-time AOTA president, president of the now National Board for Certificaiton in OT; Chair of Research Commission for AOTF

12 OT’s Role applied to SCI
Spinal cord injury or disease can lead to changes that are unanticipated, immediate and often permanent. Impairment or loss in motor, sensory function Result is a wide range of limitations in activities and participation. Herrmann et al. (2011). The comprehensive ICF core sets for spinal cord injury from the perspective of occupational therapists: a worldwide validation study using the Delphi technique. Spinal Cord, 49, The ICF Maximizing abilities with CLOF – research articles

13 International Classification of Functioning, Disability, and Health
OT’s Role in SCI Problems are direct result of interaction between disease or injury sequelae and environmental and personal factors (contextual factors). Biopsychoscial model of the International Classification of Functioning, Disability, and Health ICF provides common understanding and descriptive language and provides a universally accepted framework for describing functioning, disability and health in persons with all kinds of health conditions, including SCI.

14 OT’s Role in SCI ICF component body functions
* Temperament and personality functions * Energy and drive functions * Sleep functions * Vestibular functions * Sensory functions related to pain, temperature, other stimuli * Voice functions * Increased/decreased blood pressure * Mobility of joint functions * Control and coordination of voluntary movement In 2011, there was a study performed to determine the validity of the ICF core sets for individuals with SCI in the early post-acute and long term context from perspective of OT’s.

15 OT’s Role in SCI ICF component body structures
* Cervical, thoracic and lumbosacral spinal cord * Cauda equina * Spinal nerves * Structure of eyes * Urinary system structure * Structure of UE, LE, trunk * Bones, joints, muscles, skin of entire body * Structure of head and neck * Structure of respiratory and intestinal systems

16 OT’s Role in SCI ICF component activities and participation examples:
* Religion and spirituality; socializing; political life * Using telecommunication devices * Changing basic body position * Transferring oneself * Pricking up, grasping, releasing manipulation * Driving * Washing body parts, drying oneself * Sexual relationships * Using household appliances In 2011, there was a study performed to determine the validity of the ICF core sets for individuals with SCI in the early post-acute and long term context from perspective of OT’s.

17 OT’s Role in SCI ICF component environmental factor examples:
* Food; drugs * General assistive products and technology for personal use in daily living, education, employment * Design, construction, and building products and technology for entering, exiting and gaining access to facilities * Financial assets * Immediate, extended family and friends * Acquaintances, peers, colleagues, community members

18 Functional Recovery by Level
Tetra vs. Para (C1-T1 vs. T2 and below) DEFINE QUADriplegia vs. PARAplegia Vent dependence at C1-C3 complete Incomplete vs. Complete; ASIA scale ASIA A-ASIA E: More detail next slide C7** Standard for where individuals can function independently (depending on obesity, age, cognition, proprioception, fear, culture, previous strength, athletic ability, motivation, adjustment to disability, pain, spasticity, fractures, medical complications).

19 Barriers to Progress Spinal Shock Pressure Ulcers DVT & PE
Spasticity – benefit or hindrance? Limited ROM Contractures Neurological Shoulder: common in tetraplegia Heterotopic Ossification (HO) Osteoporosis Orthostatic Hypotension Spinal shock – temporary loss of SC-mediated reflexes below the LOI: gradually resolves over days and months Maximize functional recovery and reduce LOS – each year, 1/3 to ½ of all ppl with SCI are readmitted Pressure Ulcers Significant detterent to independent, productive and satisfying lives 80% of SCI survivors have a PU during their lifetime; 30% have more than one; 95% are preventable Eiotlogy: unrelieved pressure, sheer, friction, moisture, poor nutrition, immobility, psychological, social and economic factors Most common areas of breakdown: Ischii, sacrum, coccyx, trochanters, heels AVOID pressure and sheering and moisture build-up Bladder Programs Most common infection in patients with spinal cord injury Avoid indwelling foley catheters – puts people at risk long-term for bladder cancer Statistics on LOS and COST LOS acute care 15 days LOS AIR 44 days Initial hosp costs after injury $140,000 Avg. first year expenses for SCI $198,000 Percent covered by private health insurance: 52% Average lifetime costs for paras - age 25; quads - $1.35 age 25 Doctors can be distracted by medical issues and it’s important for ancillary staff to bring to light some of these issues PRESSURE ULCERS: Blood pressure Medication to regulate and interaction between Encourage use of external modalities (TED hose, ace wrapping, Abdominal binder) Reinforcing OOB activity as EARLY as possible Fluid/food intake Bowel/Bladder d/c foley as soon as medically appropriate! Medication to regulate Encourage independence & compliance with B&B programs to minimize accidents and prevent AD Encourage commode use ASAP Spasticity Management

20 Barriers to Progress Orthostatic Hypotension Autonomic Dysreflexia
*Bladder Management *Bowel Program * Skin Issues Respiratory illness Most common cause of death is resp. failure. Head Injury Psychosocial Adjustment Resp Care – primary cause of death with PE, septicimia

21 OT Evaluation: ICF * Same as above
Prior Level of Function * Body functions/Structures<>Activities<>Participation * Environmental factors, Personal Factors Current level of function * Same as above * Musculoskeletal and neuromuscular assessment * Sensation (light touch, pin prick, proprioception) * Mobility (balance, synergy, coordination, substitution) * Skin integrity, blood pressure, endurance * Psychosocial factors Biopsychosocial Model of ICF Prior Level of Function assess baseline understand pt/family goals learn about pts environment & resources & support Current level of function (esp in acute will establish if neurologicaly they are recovering or getting much worse, this should be re-eval’d every week) Per ASIA examine – done in supine. Prevents interuptions due to orthostasis and provides a constant from Acute to inpat, sitting may cause them to focus more on balance than what you’re asking MMT, ROM, Tone, Neurological shoulder-which will be discussed in detail later-for now its important to: MMT Never assume that all musculature above the diagnosed level is functioning normally – you’ll miss any preexisting weakness and substitution patterns When performing a muscle test, watch for substitution – pts quickly learn to use functioning musculature to perform the actions of those that are weakened or absent, this is an important skill for improving functional status but it can wreak havoc on the eval results. Make sure to eliminate motions at all other joints - ex: ant deltoid can be used to extend the elbow in the absence of triceps functions - radial wrist extensors can be used to flex the fingers in the absence of any functioning finger flexors (tenodesis grasp) Sensation: ASIA testing – compare cheek with area testing – same or diminished, proprioception, pin prick (great predictor for motor recovery based on the location of the 2 tracts in the spinal cord, kinesthetics) Mobility (balance, muscular coordination, spasms) Orthostatics Endurance

22 Treatment along the continuum of care Working Together for a Successful Outcome: Interdisciplinary Concepts

23 Interdisciplinary Concepts
I/ADL Progression is inextricably linked to PT, RT, SLP, psychology, medicine and nursing concepts: - ADLs at a wheelchair level DME/AE selection Mobility preparation and strategies Transfers to BSC, TTB, shower chair, standard bed, couch, dining room chair Bowel/bladder management (education & technique) Sexuality education Instrumental Activities of Daily Living Client’s ability to direct his/her care SCI Education Raheleh ADL PROGRESSION Sitting balance on DME Rolling for dressing DME/AE selection Transfers to BSC, TTB, shower chair, standard bed 5) ADLs at a wheelchair level (grooming, dressing, cathing) 6) Bowel/bladder management (education & technique) 7) Sexuality education

24 Progressing ADL’s ADL Hallmark level/expected outcomes Intervention
Tips/Tricks Eating/ Groomig C5: set up with AE C6: set up with or without AE (Tenodesis) C7/C8: indep with time or AE T1 and lower – indep -dorsal wrist support with u-cuff -univ cuff -non-skid material -long straw, cup with univ handle -built up handles and tenodesis -mobile arm support -wash mitt -electric toothbrush/razor - Automatic dispensers -upright positions with elbows supported -Progress based on food consistency/type & preferred foods -C or D handles to maximize handling -lever handles Tenodesis

25 ADL’s - Progression ADL Hallmark level/expected outcomes Intervention
Tips/Tricks Bathing C5: max A to dependent C6: min to max A (Tenodesis) C7/C8: mod A to indep T1 and lower – indep long handle sponge Soap on a rope Hand held shower heads Grab bars - wash mitt - electric toothbrush/razor - Automatic dispensers - Lever handles Combine bathing/toileting tasks Monitor water temperature and blood pressure You can see where principles of body mechanics, balance, coordination, proprioception, sensation are important in ADL’s

26 ADL’s - Progression ADL Hallmark level/expected outcomes Intervention
Tips/Tricks Dressing C5: mod A to dependent C6: mod I to max A (Tenodesis) C7/C8: mod I T1 and lower – indep Button/Zipper hook Dressing sticks, sock aides, reacher Leg straps Bed ladder Supine in bed; Long sit; ring sit; rolling; in wheelchair (wc) Progress surface types (firm to soft) Progress body mechanics Backwards/forwards chaining Over-practice to assure functional carry-over Encourage progression to wc level

27 Bowel and Bladder Equipment Selection Do your homework and advocate
Bowel and Bladder Equipment Selection Do your homework and advocate! Important considerations: Basic Complex Tub Transfer Bench vs. Shower Chair Tile in Space vs. Recline Standard vs. Bariatric Cut out location/need Drop Arm vs. Fixed Wheeled Padding vs. Hard Surface

28 Bladder Management Program type - UMN vs. LMN Adaptive Equipment
Intermittent: bag kits, straight catheters, antibacterial, pre-lubricated Indwelling: leg bag, Foley bag (aesthetics, modesty) Catheterization schedule: habits, roles, routines Keys to success: consistency, hydration, activity, support system Adaptive Equipment mirrors, inserters, spreaders, holders, clothing/environmental modification Positioning Education

29 Bowel Management Program type - UMN vs. LMN Schedule
- habits, roles, routines - consistency, diet, activity, support system DME/Adaptive Equipment - mirrors, inserters, stimulators, environmental modification Positioning - bed vs. bedside commode vs. shower vs. standard toilet Education

30 Sexuality P-LI-SS-IT model
Permission Limited Information Specific Suggestions (OT’s STOP here) Intensive Therapy Educate on the facts & provide information on: adaptation positioning for security comfort and trunk control Refer to physician for potential medical interventions Taylor, B. & Davis, S. (2006). Using the extended PLISSIT model to address sexual healthcare needs. Nov ; 21(11) Women – lubrication, orgasm, pregnancy Men – erection, ejaculation, fertility UMN – lose psychogenic but retain reflexive erection ability LMN – lose reflexive but may retain psychogenic Predictors of sexual satisf: perception of partner’s satisf with sexual relationship, intimacy of the relationship, willingness of sexual experimentation Psychological aspect – how the person perceives themselves as a sexual being – ROLES!!

31 Another ADL: a relearning process –
Sexuality SCI may result in heightened, decreased, or lack of sensation and perception in various dermatomes. Encourage patients to: explore themselves physically and identify these changes, discuss with therapists and physicians when there are questions communicate changes with their partner and be open to multiple forms of sexual stimulation. Consider psychosocial history and current issues – refer as appropriate to other disciplines Another ADL: a relearning process – How does the person view their roles, responsibilities and participation?

32 Management of the Neurological Shoulder
Coordination of Muscle Synergies SCI results in inability to coordinate isometric, eccentric, and concentric muscle contractions SCI results in inability to control speed and direction As a result, clinical presentation often shows “all or nothing” Upper extremity preservation/protection Betz, Kendra. Contemporary Forums Spinal Cord Injury Conference: Upper Extremity Pain and Injury: Interdisciplinary Approaches for Prevention and Treatment. San Francisco, 2008. Neuromusc reeduc

33 Aging & SCI Mental flexibility/adaptability
Considerations for acute SCI in older adults Mental flexibility/adaptability Pre-existing body structure/function issues Support systems Resources/ability to make modifications Considerations for older adults with chronic SCI Life expectancy with paraplegia – similar to that of able bodied adults; tetraplegia – reduced by 10% Exacerbated musculoskeletal, respiratory, urinary symptoms May benefit from more assistance, home modifications, AE/AD/DME Harvey, L. (2008). Management of Spinal Cord Injuries Skin, vision, mobility Use of AD, AE, DME

34 Applying what we know… “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” ~Maya Angelou

35 HOW do we define function and independence?
ROM Strength FIM scores: ADL’s, transfers, mobility International Classification of Functioning: “positive overall health condition” AOTA: Living Life to its Fullest CLIENT GOALS “…a state of self determination.”

36 WHO defines function and independence?
John: 40 year old OT with 15 years of SCI experience. Works 50 hours/week on an inpatient SCI unit. Melanie: 20 year old in roll over MVC 2 weeks ago with resulting T10 ASIA A SCI. With so many treatment options, an infinite number of attainable goals – how do we prioritize?

37 Therapy is… …an interactive, interpersonal experience.
It is the therapist’s responsibility and skill to read between the lines Have we taken into account: Purpose, goals, routines, meaning, drive, desires, fears, world view, context, etc?

38 Case Study - Jason 31 yo male, injured in bike racing accident
IBM employee Required to d/c from AIR at modified independent level He blogged his entire rehab journey and continues to blog on a regular basis The following are some quotes reflecting his rehab experience

39 Lessons from a Rehab Blog
Occupational Therapy “Occupational therapy teaches you how to do pretty much anything you need to do to live your life. Lately, whenever the therapists ask me to do something a normal person would do, like open a door or push an elevator button, I say, "It's occupational!".  “Speaking of food, my occupational therapist, is going to teach me to make brownies on Friday.  Ghirardelli brownies no less.  Earlier this week, they taught me to make a bed, vacuum a carpet, and do laundry.  All good stuff to know.  All 10 times harder than it is for walkers.”

40 Lessons from a rehab blog
OT in context: Purpose/Meaning “Work is going about as well as it could.  I'm still working 3 hours a day, and I think it's getting easier.  I'm still glad I'm doing it.  It makes me feel like I'm accomplishing something.  It's about the only time I feel useful.” “Gus continues to make himself indispensable.  Last weekend, we took my van over to his house to do a little work on it.  I really appreciate that, but it's frustrating to watch him do work that I used to be perfectly capable of doing myself.  Makes me feel useless.”

41 Lessons from a rehab blog
Independence gets a whole new meaning “……they say it means that I will eventually be able to regain almost complete independence.  It's hard to imagine right now how I'm going to get to that point since right now, I can't even sit up on my own, but for now I'm willing to trust that it's true.” “I take solace in the fact that I've met people who have lived in chairs for decades, and they have obviously figured all this stuff out, but I'm still getting a little nervous about whether, and when I'll figure it all out.”

42 Lessons from a rehab blog
Reality of discharge, necessity of routine “That knowledge and my short countdown to release has me worried.  There's still a LOT I can't do on my own.  It's hard to imagine I'm going to master all of it in the next three weeks. I'm going to have to use some of those skills to survive in my apartment.  Transferring from my wheelchair into the shower is just one example of a daily activity that requires a tremendous amount of strength and balance, and which has a lot of opportunity for painful failure.  I've only done it once successfully, and the shower in here is much larger, and I had two spotters.”

43 What it all means… Teamwork & communication through the continuum of care and stages of recovery impacts outcomes Success is dependent on a good foundation A good foundation is based on listening. Bio-psycho-social model indicates all 3 are critical and must all be investigated and integrated Therapists must facilitate development of a reliable, comfortable and patient-driven routine. Then practice, practice, practice. We bridge the gap from injury to recovery through training, education, and support…EMPOWERMENT

44 References Harvey, L. (2008). Management of Spinal Cord Injuries
Consortium for Spinal Cord Medicine. Preserving Upper Limb Function Following Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals. Paralyzed Veterans Association Available for free at: Lindsey L, Klebine P, Wells MJ. Understanding Spinal Cord Injury and Functional Goals. Birmingham, AL: Office of Research Services, University of Alabama at Birmingham, 2000. O’Sullivan S, Schmitz T. Physical Rehabilitation: Assessment and Treatment. Philadelphia: F.A. Davis Company, 2001. Somers, M. Functional Rehabilitation of Spinal Cord Injury. Norwalk, CT: Appleton & Lange, 2002. Musick, Darrell. Contemporary Forums Spinal Cord Injury Conference: Mobility Progression for Spinal Cord Injury. Las Vegas, 2006. Betz, Kendra. Contemporary Forums Spinal Cord Injury Conference: Upper Extremity Pain and Injury: Interdisciplinary Approaches for Prevention and Treatment. San Francisco, 2008. McKinley, W.,Santoa, K., Meade, M., Brooke, K., "Incidence and Outcomes of Spinal Cord Injury Clinical Synromes", The Journal of Spinal Cord Medicine, 30(3): , January 2007. Hutchinson, S., Loy, D., Kleiber, D., Dattilo, J., “Leisure as a Coping Resource: Variations in Coping with Traumatic Injury and Illness”, Leisure Sciences, 25: , 2003. O’Brian, A., Renwick, R., Yoshida, K., “Leisure participation for individuals living with acquired spinal cord injury”, International Journal of Rehabilitation Research, 31 (3), 2008.

45 References Outcomes Following Traumatic Spinal Cord Injury: Clinical Practice Guidelines for Health-Care Professionals. Consortium for Spinal Cord Medicine: Clinical Practice Guidelines. July 1999 Herrmann et al. (2011). The comprehensive ICF core sets for spinal cord injury from the perspective of occupational therapists: a worldwide validation study using the Delphi technique. Spinal Cord, 49,

46 Spinal Cord Injury Educational Resources
National Spinal Cord Injury Association (NSCIA): association that promotes independence, health and well being of individuals with spinal cord injury and disease through a free help-line, an on-line forum, nationwide chapters and support groups. Website: Paralyzed Veterans of America (PVA): offers numerous publications, fact sheets and authoritative clinical guidelines for SCI (in English and Spanish) and supports research by way of its Spinal Cord Research Foundation. Website: Spinal Cord Injury Information Network: Rich source of information on all topics related to SCI including medicine, liffestyle, religion, advocacy & technology Website: Christopher and Dana Reeve Paralysis Resource Center (PRC): a program created to provide a comprehensive information source for people living with paralysis and their caregivers to promote health, community involvement and quality of life. Website:

47 Spinal Cord Injury Educational Resources
The University of Miami School of Medicine Offers an easy to use online manual on spinal cord injury health and wellness Website: The University of Washington School of Medicine: Maintains a useful website with information on skin care, bowel and bladder management and other topics of concern for people with spinal cord injuries Website: Craig Hospital: Located near Denver, specializes in the rehabiliation of SCI and TBI. Federally-supported educational materials are available online to help survivors maintain health and wellness. Emphasis on issues related to aging with a disability Website: (click on “spinal cord injury” then “health and wellness”

48 Spinal Cord Injury Educational Resources
North Carolina Office on Disability and Health: Promotes the health and wellness of people with disability in North Carolina through an integrated program of polocies, programs and research Website: Shepherd Center: Key to Independence Workbook Website: Take Control: A multi-media guide to SCI Website: North Carolina Spinal Cord Injury Association -

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