Beyond Standard Care and Treatment in Brain Injury rehabilitation D R S UE C OPSTICK C ATH M URRAY -H OWARD The Disabilities Trust European Neuroconvention, ExCel, London, 6-7 June 2018
How to rehab ABI? The effects of ABI are complex and multi modal. Capturing complexity of clinical presentation an ongoing challenge. Establishing meaningful and effective outcome measures ongoing challenge. Various bodies have produced guidelines re how to rehabilitate ABI to ensure the right people get the right services.
Clinical standards • NICE, SIGN, BSRM, RCP – All stress MDT medic-led services for post-acute care (less so community rehabilitation) – medical leadership for delivery of restorative therapy and psycho social adjustment – emphasise what services are rather than clinical outcomes per se (although outcome measures such as Fim Fam and MPAI are requested by e,g, UKRoC).
Clinical audit and governance • Necessary to ensure standards of care, for service users, family and our commissioners. • Clinical standards should ensure good outcomes. • But what outcomes were we looking for; • This depended on who was in our services, and this seemed to be changing.
Changes in people served at The Disabilities Trust (I) • Older
Changes in people served at The Disabilities Trust (II) • Older • Admitted directly from hospital…
Changes in people served at The Disabilities Trust (III) • Older • Admitted directly from hospital… • … and sooner since injury
Changes in people served at The Disabilities Trust (IV) • Older • Admitted directly from hospital • … and sooner since injury • Shorter stays
Analysing our clinical data in terms of impairment rather than dx • We found there were three clusters of impairment of those commissioned (putting dx to the side for a moment) • One cluster had global impairment • Another had severe cognitive and behavioural impairment but more physically able. • Another had very specific impairment of mobility or language with good cognition.
“Complex” consequences of ABI Individual differences on the Mayo-Portland Adaptability Inventory (MPAI) - Larger splats mean greater impairment - 4 3 2 1 0
Moreover, the clusters differed in clinical outcomes; care needs • The globally impaired group tended to require long term specialist care and enablement. • The socially impaired or dysexecutive group were discharged home or to supported living • The group with specific deficits were discharged home or to supported living. • Assessed by Accommodation scale and SRS
Our challenge • Making sense of this complexity – Understanding individual rehabilitation needs – Matching care and treatment to those needs… – … In a cost -effective way. – Using outcomes that would reflect our BIRT service and what they targeted. Producing clinical outcome measures which were appropriate and effective, taken we had to show cost effectiveness/reducing the care costs.
BIRT; expertise in anterior BF. • All three clusters had problems with at least 3 of the six NB domains of anterior brain function. • Self awareness or insight, with learning and memory deficits were the most common problems reducing social participation in all groups. • Our treatments targeted these issues, along with improving or restoring function, and use of compensatory strategies. • How important is such cognition in predicting outcome of rehab following stroke, taken that use of restorative strategies depended on people recognised (had insight into) the effects of their ABI?
Holistic neurobehavioral rehab • Psychotherapeutic approaches incorporating neuropsychological formulation based on expert understanding of the ABI on functioning. • constant, sensitive social support and effective 24 hr staff communication. • Family involvement key and predictive. • Constant positive support for rehearsal of restorative methods, with positive feedback and errorless learning techniques.
Holistic neurobehavioral rehab following severe stroke • 20% increase in such referrals. • Lack of self awareness common in this population, neglect and inattention well documented. • What is it about our HNB approach that might enhance clinical outcomes? • What is it about our HNB physical environments that might enhance outcomes?
Pilot study; how important is self awareness in predicting social participation? • N = 96 service users • Aged 18 to 82 • Up to one year post-stroke • All first stroke occurrence • Exclusions : premature discharge, active psychosis, cognitive impairment due co- morbid condition.
What determined social participation and reduced supervision needs on discharge ? • Multi-variate correlational analyses • Independent variables : gender; age; type of stroke; side of stroke; lowest Glasgow Coma Scale score (GCS); time since injury on admission (TSI); length of stay in rehabilitation (LOS). • Outcome measures pre-, during and post- rehabilitation : MPAI Participation sub-scale and self- awareness score, Hospital Anxiety and Depression Scale (HADS), Supervision Rating Scale (SRS), BIRT Independent Living Scales (BILS).
N=97, 62 males, 35 females M SD Mdn 55.05 Whole sample (n = 97) Age on Admission 11.36 54 18 Length of Rehabilitation Stay 8.09 15 Time Since Injury 3.82 2.83 3.0 Lowest GCS (n = 16) 7.56 3.79 7.5
Note: BSC = Brainstem/Cerebellum. PACS = Partial Anterior Circulation Syndrome. POCS = Posterior Circulation Syndrome. TACS = Total Anterior Circulation Syndrome. BGT = Basal Ganglia/Thalamus. PIHCA = Anterior primary intracerebral haemorrhage. PIHCMP = Middle or posterior cortical primary intracerebral haemorrhage. SAHMP = Middle or posterior subarachnoid circulation haemorrhage. SAHA = Anterior subarachnoid circulation haemorrhage. Frequency Percent of sample Full sample (n = Stroke type (n = BSC 1 1 97) 35) PACS 2 2.1 POCS 2 2.1 TACS 3 3.1 BGT 4 4.1 PIHCMP 4 4.1 PIHA 5 5.2 SAHA 7 7.2 SAHMP 7 7.2 Side of stroke (n = Left 18 23.7 41) Right 23 18.6 Gender Female 35 36.1 Male 62 63.9
Results: what correlated with social participation following rehab? Correlations with Social Participation (MPAI-C) on Discharge 1 0.9 0.8 0.7 ** 0.6 0.5 0.4 * 0.3 ( * ) 0.2 0.1 0 Age on Length of stay Time since Anxiety Depression Self-awareness Self-awareness admission injury on admission on discharge
Results: distribution of self-awareness scores from admission to discharge Self-awareness Admission Discharge None or very Mild problems Moderate to TOTAL mild problems (interferes with severe problems activities 24% of the time) % improved 8 38 67 51 % unchanged 59 37 25 25 % deteriorated 33 25 8 14
Conclusions • Self-awareness in stroke patients improves using our HNB approach to rehabilitation. • Those with less insight into difficulties on admission are more likely to benefit from rehabilitation. • The more insight, and less anxiety a person on discharge, the more likely they are to participate in life.
So what?... • Regardless of type of severe stroke a person’s your awareness of what has happened ‘predicts’ their ability to participate in life. • Holistic neurobehavioural rehabilitation improves insight. Should this be a key outcome in future? • Our enriched social and physical environments, with errorless learning and ongoing daily rehearsal of strategies, helps the person increase his acceptance and self awareness of how s/he has to cope. • Service – outcome relationship. More research is underway.
To learn more about the evidence base for this approach Clinical effectiveness Cost effectiveness • Cattelani et al. (2010). Rehabilitation • Andelic, N., Ye, J., Tornas, S., Roe, C., Lu, J., treatments for adults with behavioral and Bautz-Holter, E., ... & Aas, E. (2014). Cost- psychosocial disorders following acquired effectiveness analysis of an early-initiated, brain injury: A systematic review. continuous chain of rehabilitation after severe Neuropsychology Review , 20 (1), 52 – 85. traumatic brain injury. Journal of neurotrauma , 31 (14), 1313-1320. • Cicerone et al. (2011). Evidence-Based • Oddy, M., & Ramos, S. (2013). The clinical Cognitive Rehabilitation: Updated Review of the Literature From 2003 Through 2008. and cost-benefits of investing in Archives of Physical Medicine and neurobehavioural rehabilitation: A multi-centre Rehabilitation , 92 (4), 519 – 530. study. Brain Injury , 9052 , 1 – 8. *Open Access* • Geurtsen et al. (2010). Comprehensive • VanHeugten CM, Geurtsen GJ, Derksen RE, rehabilitation programmes in the chronic Martina JD, Geurts ACH, Evers SMAA. Interve phase after severe brain injury: A ntion and societal costs of residential systematic review. Journal of community integration for patients with Rehabilitation Medicine , 42 (2), 97 – 110 acquired brain injury: A cost-analysis of the brain integration programme. Journal of Rehabilitation Medicine 2011;43:647 – 652
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