Acute Rehabilitation after Brain Injury A driver for change?

1. Rehabilitation after Acquired Brain Injury (ABI) A medical view Acute Rehabilitation after Brain Injury A driver for change? Dr. Richard Greenwood National Hospital for Neurology and Neurosurgery & Homerton Hospital NHS Trust Oct 2008

2. Acute inpatient rehabilitation after ABI • Epidemiology • Improvements in plant and process 1985-2008 • Failure to provide acute rehabilitation • Reversal of complications • Gaps in service provision

3. Epidemiology & economic consequences of TBI in England TBI Stroke Incidence of admissions /105 229 (London 176)1 174-2163 Prevalence of disability (all x 105: /1000) England & Gr London 7.6 & 1.2/151* 3.0 & 0.5:6.52* Direct & Indirect economic consequences UK ? £7bill2 US $60 bill4 $65.5bill5 1* ”…living with the consequences of a head injury” 2* ”…living with moderate to severe disabilities as a result of stroke” 1. Tennant A. DH 2005 (2001-2 data) 2. NAO/DH 2005 3. UK Nat Clin Guidelines for Stroke, 2008 4. Finkelstein et al, 2006 (2000 data) 5. Am Heart Assoc, (2008 data)

4. D & I costs of injury by body region US 2000 data Total = $406 bill TBI = $60 bill UL/LL each $68 bill Finkelstein et al, 2006

5. Changes in cultural, social and political aspirations This National Service Framework (NSF) for Longterm Conditions marks a real change in the way health and social care bodies and their local partners will work with people with longterm conditions to plan and deliver the services which they need to make their lives better. • Supporting people to live independently and play their full part in society. 1985 “Congratulations, you’ve won our best value contract for rehabilitation” John Reid Secretary of State for Health March 2005

6. 1978 ERN Changes in rehabilitation plant after brain injury 1978-2008 2008

7. Slow stream Behavioural Kemsley Physical Putney Rehabilitationservice mapping pathway after TBI 1985 xxxxx = shortfalls =delays £££ Community and Outpatient servicesHospital and Inpatient services ACUTE TBI Home with support for Patient and Carer Code 110 A&E department Home with minimal support for patient & carers A&E department Minor TBI Education plus emotional and social support Code 05 Observation ward Code 05 ACUTE ACUTE ITU & NSU Supportive Codes 10&20 DGH acute surgical ward Community Unit &/or Team Code 70 Rapid Access Code 30 Outpatient PT & OT Active participation (0ver < 6/12) Code 40 Active participation regional unit (during < 6/12) physical RNRU & Wolfson EARLY EARLY Behavioural Passive - Code 50a Active - Slow stream Code 50b Intensive cognitive Code 80 Specialist vocational Code 90 LATE LATE Slow Stream Transitional (over > 6/12) Physical - Code 60a Cognitive - Code 60b Young disabled unit Maintenance Code 100 After Pickard JD et al. J Roy Soc Med 2004; 97: 384 – 9

8. Slow stream complex specialist (during > 6/12) Behavioural Code 50 Transitional Code 60b Physical Code 60a Rehabilitationservice mapping pathway after TBI 2008 £££ Community and Outpatient servicesHospital and Inpatient services ACUTE TBI Home with support for Patient and Carer Code 110 A&E department Home with lifelong maintenance via medical, environmental, care, therapy and leisure support for patient & carers as needed Codes 100/110 A&E department Minor TBI Education plus emotional and social support Code 05 Minor TBI clinic Code 05b Acute admission ward Code 05a Observation ward Code 05 ACUTE ACUTE Outpatient cognitive & emotional support forwork/education return Code 70b Supportive (ITU & NSU) Codes 10 & 20 Supportive Codes 10&20 Acute rehabilitation 4-6/52 post ITU/NSU Code 30 Community Unit &/or Team Code 70 Rapid Access Code 30 CRTs multidisciplinary specialist complex specialist Code 70a Active participation (0ver < 6/12) Code 40 Active participation complex specialist (during < 6/12) Phys/Cog - Code 40a Cognitive – Code 40b EARLY EARLY Social services care packages providing assistance or supervision home modifications Behavioural Passive - Code 50a Active - Slow stream Code 50b Intensive cognitive Code 80 Specialist vocational Code 90 LATE Intensive cognitive Code 80 Specialist work Code 90 LATE Slow Stream Transitional (over > 6/12) Physical - Code 60a Cognitive - Code 60b Specialist residential/nursing home Maintenance Code 100 After Pickard JD et al. J Roy Soc Med 2004; 97: 384 – 9 Clinical case manager(ment)

9. Rehabilitation as neural protection Mechanisms of functional recovery after ABI • Prevention of neural and systemic complications & • Functional compensation via - behavioural adaptation & substitution - modification of personal, environmental and social contextual factors allow • Neural restoration & substitution via - resolution of oedema, mass effects, toxic-metabolic dysfunction, and diaschisis - neural replacement and regrowth - reorganisation of use-dependent neuronal networks

10. Rehabilitation Acute treatments Acute treatments Rehabilitation Facilitating Recovery after Brain Injury Injury A Not B 2008 Time 1985 Injury

11. REHABILITATION PLANT and PERSONNEL Multidisciplinary teams ITU & Tracheostomy outreach teams Some patients are admitted with tracheostomy Family & carers MDT family meetings for TBI education, effective communication, & involvement in discharge planning Neurosurgeons & neuroradiologists For neurosurgical opinions & intervention & urgent scanning PCT commissioners Negotiations to fund further rehab programmes General & orthopaedic surgeons Many patients have polytrauma in addition to TBI Interdisciplinary team work e.g. key worker, MDT meetings, case reviews, family meetings, integrated care plans, case notes Discharge planning on admission, with reference to need, recovery rate & availability of social & community support Goal setting & outcome measures Patient-centred goals are essential, “Gantt chart” goal management; outcome measures utilised routinely Neuro-psychiatrists Affective disorders common particularly in patients with pre-existing psychiatric diagnoses Community neuro-rehab teams Liaison to plan ongoing rehab needs at discharge CORE ARU TEAM Clinical governance Including PPI, clinical risk management, clinical audit, integrated care pathways, bench marking Education & research Continued professional development & education improve IDT working, unit ownership & staff morale Neuro-psychologists Provide assessment and management of cognitive and behaviour disorders Community mental health teams Many TBI patients have co-existing psychiatric, addiction & substance abuse problems Other specialist rehab units Referral if further inpatient rehab programmes are indicated clinically Social services Care packages for discharge planning; high incidence of premorbid social & forensic problems GPs & District Nurses To provide general medical follow-along

13. ICF 2001 An interactive classification of health Body function & structure (Impairment) Activities (Limitation) Participation (Restriction) Health Condition (disorder/disease) (ICD-10) Environmental Factors Personal Factors Subjective Quality of Life & Well-being

14. The rehabilitation process: COGS FRAMEWORK FOR TREATMENT Contractually Organised Goal System

15. The rehabilitation process: (C)OGSgenerates behavioural change Inpatient goalsGoals in the community Treatment aim (over 6 months) • Independence in personal care Independent in current living arrangements Long term (6/12) goals • To transfer independently from wheelchair to toilet To move independently from room to room • To stand from sitting independently To be left unattended for half a day • To achieve independent continence To prepare and eat a snack lunch without supervision • To walk indoors with an aid and supervision To do all own housework and domestic management Short term (1/12) goals • To groom myself and put on make-up To take myself to the toilet • To transfer with a sliding board and one person To make myself a drink • To use a bed-pan for bladder continence To operate a television • To stand from sitting with a rail To safely stay alone for 2 hours TO MAKE LIFE WORTH LIVING Long term aim

16. UK Provision of Acute Inpatient Rehabilitation after TBI “The timely transfer of patients from acute neuroscience units to an appropriate rehabilitation unit is a major and neglected problem that does not always attract the attention it deserves………the maintenance of the status quo is not a viable option………. Resources must be provided for the care of patients who no longer need acute neurosurgical care. They should not be cared for on an acute general surgical, orthopaedic or general medical ward……… It is unacceptable for patients to spend prolonged periods on acute surgical or medical wards awaiting a place at a dedicated rehabilitation unit.” Galasko report, RCS June 1999, paras 15 &16, pp 31&32

17. Mapping Rehabilitation Services for TBI Eastern Region 2002-3 PP Code 30: Rapid access rehab - Potentially medically unstable, needs continuous clinical assessment to detect deterioration, unable to actively participate due to PTA or low awareness Pickard et al. J Roy Soc Med 2004; 97: 384-9

18. BODs in NSU beds (>2/52, during 5/12, aet 16-70) 42% of BODs not in acute NSU care eg. 240 elective procedures/106 pop pa Bradley et al BJN, 2006; 20: 31-4

19. Acute inpatient rehabilitation after TBI – UK “usual care” Baseline characteristics Jan 2002-Dec 2004 • Total 116 patients, 90 medical notes available • 4679 patients seen in A&E, 763 (16%) admitted, 116 (2/15%) >48hrs • Ward transfers following first 48 hours of admission:

20. Acute inpatient rehabilitation after TBI – UK “usual care” Results: on admission • Baseline assessment • Was the patient seen by a neurosurgeon/neurologist within 2 working days? Yes = 3%, No = 97% • Was the patient referred for neuropsychological assessment of cognitive function?Yes = 3%, No 97% • Treatment Plan • Were confused or agitated patients subject to an agreed behavioural plan that was instituted consistently? Yes = 0%, No = 100% • Prevention of systemic complications • Were compression stockings fitted In patients with weak or paralysed legs? Yes = 62%, No = 38% • Was nutrition provided via a nasogastric tube within 48hours of injury in patients unable to maintain adequate nutrition orally? Yes = 86%, No 14%

21. Acute inpatient rehabilitation after TBI – UK “usual care”Results: during admission and at discharge • Monitoring progress • Were confused or agitated patients monitored using a standardised measure of post traumatic amnesia? Yes = 0%, No = 100% • Was there a neurological/neuropsychological follow up assessment two to three months post injury? Yes = 10%, No = 90% • Patient and family education • Was the patient made aware of possible longer term problems and the existence of services they should contact? Yes = 23%, No = 77% • Were family and carers given information and involved in taking decisions and making plans for support? Yes = 8%, No = 92% • Discharge plannning • Were patients referred to a rehabilitation team in the community when they were being considered for discharge? Yes = 32%, No = 68% • Was the patient given a discharge advice card which included details of support services? Yes = 20%, No = 80%

22. Acute inpatient rehabilitation after TBI – UK “usual care”Compliancein 13domains Time from admission Admission 1. Multidisciplinary evaluation 2. Baseline assessment 3. Early initiation of rehabilitation 4. Management of general health functions 5. Prevention of complications 6. Screening for rehabilitation placement 7. Goal setting 8. Treatment plan 9. Monitoring of progress 10. Management of impairments 11. Family involvement 12. Patient and family education 13. Discharge planning Discharge Increasing compliance + C o m p l i a n c e _ 1. Baseline assessment 2. Prevention of complications 3. Multidisciplinary evaluation 4. Screening for rehabilitation placement 5. Patient and family education 6. Discharge planning 7. Treatment plan 8. Management of impairments 9. Monitoring of progress 10. Management of general health functions 11. Family involvement 12. Early initiation of rehabilitation 13. Goal setting

23. Complications without acute rehabilitation after BI 1987 Audrey 32 SAH & left MCA infarct 3/12 previously Complications prevent (access to) neural reorganisation and functional recovery

24. Complications without acute rehabilitation after BI • Rusk et al 1966/1969 75%>18/12 post injury; n= 127; Av loc 3/52 Pressure Sores 40 Joint Contractures 200 Frozen Shoulders 30 • Mark 25; 1988, adm GCS 3/15 - Left subdural haematoma evacuated at craniotomy - Acute surgical bed until admitted ERU 12 weeks post injury - Bilateral achilles and wrist and finger flexor lengthening procedures - Walked indoors after transfer to behavioural unit at 15 months - Home at 3 years with outpatient physio

25. Acute inpatient rehabilitation after TBI Management of Post-traumatic Confusion Video 6/52 post injury • Ruth: 19, RTA 24.05.00 • Admission GCS 5/15 • Intubated & ventilated • CT: DAI & frontal contusions • SITU: bolt, tracheostomy • ABIU: 08.06.00, peg • ERU: adm 31.07 – 13.11.00 • PTA 11-12/52 • Specialist outreach and then • vocational rehab teams. • Graded return to previous • job as care assistant; • subsequently dental nurse • training…

26. Cause and Effect Comorbidities Other polytrauma Other premorbid systemic disease Physiological instability (T, BP, Na+, etc) GI bleeds Drug side effects Immobility & physical dependency Pressure sores & skin breaks Contractures (Shoulder) pain Aspiration of GI secretions PEs & DVTs Falls Catastrophic illness Critical illness neuromyopathy Family breakdown PTSD Depression/Anxiety Management Specific medical/surgical management Specific medical management Maintain physiological homeostasis ? prophylactics; avoid NSAIDS Drug withdrawal Pressure care, and 24hr handling & positioning Bedhead elevation; H2 antagonists Thromboprophylaxis Risk assessment Physical rehab programme Information, information, + training CBT +/- drugs CBT +/- drugs Generic complications during acute rehabilitation after BI

27. Cause and Effect ABI Spasticity Upper airway obstruction Aspiration of food and fluid Malnutrition and dehydration Incontinence TBI Amnesia, confusion and agitation (Re)bleeds, hydrocephalus, & mass effects The vegetative and minimally aware states Post-traumatic epilepsy Autonomic storms SIADH & pituitary/hypothalamic dysfunction Cognitive impairments Maladaptive behaviours Heterotopic ossification Risk factors for TBI Alcohol withdrawal Other substance abuse & MH problems Epilepsy Management Spasticity management Tracheostomy management Ng/peg feeding and dietetics Bowel regime, toiletting programme Environmental management +/- drugs Neurosurgical input Avoid misdiagnosis ? continue AEDs if high risk Medication +/- ITB Endocrine replacement Rehab of “anterior” vs. “posterior” cognitions Behaviour modification Etidronate or NSAIDs Multivitamins & sedation Liaison/Neuro psychiatry input Continue AEDs +/- modifications Specific complications during acute rehabilitation after BI

28. Reversal of complications in early rehabilitation after BI 40 year old man 6/12 after ACOM SAH; coiled & shunted; # NOF 29.05.05 11/12 Pre Post Is neural restoration allowed or driven during functional recovery?

29. Options for acute inpatient rehabilitation after ABI 1) Peripatetic/Consultative model 2) Unit-based models (resource neutral(ish)) A. Secondary referral ABIU/DGH model All adults after stroke/TBI/SAH Single provider change required B. Supra-district tertiary model Younger adults after V & TBI, & other ABI Multiple provider/purchaser change required

30. Slow stream complex specialist (during > 6/12) Behavioural Code 50 Transitional Code 60b Physical Code 60a Rehabilitationservice mapping pathway after TBI 2008 xxxxx = shortfalls =delays £££ Community and Outpatient servicesHospital and Inpatient services ACUTE TBI Home with support for Patient and Carer Code 110 A&E department Home with lifelong maintenance via medical, environmental, care, therapy and leisure support for patient & carers as needed Codes 100/110 A&E department Minor TBI Education plus emotional and social support Code 05 Minor TBI clinic Code 05b Acute admission ward Code 05a Observation ward Code 05 ACUTE ACUTE Outpatient cognitive & emotional support forwork/education return Code 70b Supportive (ITU & NSU) Codes 10 & 20 Supportive Codes 10&20 Acute rehabilitation 4-6/52 post ITU/NSU Code 30 Community Unit &/or Team Code 70 Rapid Access Code 30 CRTs multidisciplinary specialist complex specialist Code 70a Active participation (0ver < 6/12) Code 40 Active participation complex specialist (during < 6/12) Phys/Cog - Code 40a Cognitive – Code 40b EARLY EARLY Social services care packages providing assistance or supervision home modifications Behavioural Passive - Code 50a Active - Slow stream Code 50b Intensive cognitive Code 80 Specialist vocational Code 90 LATE Intensive cognitive Code 80 Specialist work Code 90 LATE Slow Stream Transitional (over > 6/12) Physical - Code 60a Cognitive - Code 60b Specialist residential/nursing home Maintenance Code 100 After Pickard JD et al. J Roy Soc Med 2004; 97: 384 – 9 Clinical case manager(ment)

31. Rehabilitation after Acquired Brain Injury (ABI) A medical view Acute Rehabilitation after Brain Injury A driver for change? Dr. Richard Greenwood National Hospital for Neurology and Neurosurgery & Homerton Hospital NHS Trust Oct 2008