SMART and WHIM in severe brain injury: a personal view

1. SMART and WHIM in severe brain injury: a personal view • What prompted the development of these instruments? • What about their • Development and Format • Implications for use • Use • Shortcomings ? • Recent developments in the evaluation of ‘clinical’ PVS.

2. Wessex Head Injury MatrixWhy? • Difficulty in monitoring improvement and deterioration in conscious patients emerging from coma after severe TBI. • Difficulty in managing expectations and setting a sequence of goals in rehabilitation. • Need for a way of combining information from different observers including family members. • Need for a structure to enable systematic observations to be made of real-life behaviours covering motor and cognitive ability and social interaction (cf. Portage scale in children).

3. Wessex Head Injury Matrix:How it was developed 1 • Close observation of both spontaneous and environmentally triggered behaviours in 88 people (incl.15 females) aged 14 to 67 during emergence from Coma until the recovery of day to day memory (i.e emergence from post-traumatic amnesia). • Causes: RTA 71, Fall 10, Assault 4, other 3.

4. Wessex Head Injury Matrix:How it was developed 2 • Four stages • Identification of all behaviours observed, using 3 response categories: Spontaneous, Responding to ‘natural’ stimuli or day to day environmental stimuli, and Responding to a standard set of formally presented stimuli. • Categorisation of behaviours into 6 subscales: Communication, Attention, Social behaviour, Concentration, Visual awareness, and Cognition. • Development of operational definitions, in order to give precise descriptions of triggers and responses. • Analysis of data and reordering of the scale to provide a ‘main scale’ incorporating all the subscales. This was tested prospectively prior to final revision and subsequently assessed for reliability.

5. Wessex Head Injury Matrix:How it was developed 3 • Detailed personal history from family and friends was essential in choosing stimuli and interpreting responses. • Every subject was assessed daily. • Prolonged periods of unmanned video-recordings were used to augment the face to face observation sessions. • All observations were used, irrespective of rate of recovery. • Frequent multidisciplinary team discussions included reflections upon the impact of specific sensory or motor impairments. • Ordering of items established statistically using the ‘paired preferences’ technique • Viz. ranking the flavours of ice creams: peach, strawberry, vanilla, chocolate, hazelnut, cherry, coffee, mint etc.

6. The Wessex Head Injury Matrix:Implications for use • It covers a wide range of observed behaviours (most of which are more advanced than would be anticipated in minimally conscious states). • It has not incorporated observations from young children or people with extremely slow recovery (eg in coma for more than 12 months). • It indicates what to expect next but does not necessarily specify every step in sequence. • It should be interpreted in the light of known impairments of sensory input and motor ability.

7. Wessex Head Injury Matrix:Use 1 • Designed for use by all members of a multidisciplinary rehabilitation team in patients recovering from coma • Initial practice in pairs followed by team discussion is recommended when used by a team for the first time. • Should be left at the bedside so that any observer can record observations • Each day all behaviours that have been observed should be ticked and those not observed should be crossed. • Start at box no 1 and stop recording once 10 successive boxes have been crossed (62 boxes in all).

8. Wessex Head Injury Matrix:Use 2 • You will need: • A large bright object to hold up. • Bell, whistle or buzzer. • Objects known to be personally meaningful to the patient (eg photo, CD cover) including a magazine. • List of factual questions compiled by the family. • 4 playing cards and 3 different coins (£1, 50p, 2p). • Small plastic toy or model. • Pen and paper. • Communication aid if used.

9. Wessex Head Injury Matrix:Use 3 • The no. of the highest ‘rung’ (or box) reached, and the number of behaviours actually observed during the observation period (the number of boxes ticked) comprise the best summary of that day’s performance. • The context should be noted (eg. quiet following a feed, having physiotherapy at the time of the assessment , etc). • The trajectory of recovery should be monitored so that (a) regression or deterioration in responsiveness can de detected early and (b) so that realistic time-specified goals can be formulated in team discussions.

12. The Wessex Head Injury Matrix:Shortcomings • Not primarily designed to exclude PVS or to define objectives in established minimally conscious states. • All rungs of the ladder are not equally spaced and in certain subjects, some may be missed out. • Not designed for use in children (esp. under age 8) • More work is needed e.g. to confirm the sequence of behaviours in patients with very slow but continuing recovery who are still amnesic 18 months or more after the injury.

13. Wessex Head Injury Matrix:Advantages in Use • Encourages close sharing of essential personal information and understanding with family members. • Helps to define promptly any changes in a patient’s responsiveness (both improvement and deterioration) and to inform expectations and goal-setting. • Provides a helpful record of stage that has been reached when a patient transfers to a different environment. • Encourages interdisciplinary teamworking and professional development.

14. SMART (Sensory modality Assessment and Rehabilitation Technique): Why? • Suspicion that VS and lack of any conscious awareness was being wrongly diagnosed by clinicians even when using systematic assessments. • Experience with the Sensory Stimulation Assessment Measure (Rader and Ellis, (1994), by which stimulation caused marked arousal, such that responses occurred that would not otherwise have been seen. (Cf. DBS) • Demonstration that some patients had greatly restricted motor ability but could communicate via a switch connected to a buzzer, an ability that had been missed by current standard assessment of the same patients. • Demonstration that it was essential to repeat assessments over a period of time before concluding a diagnosis.

15. SMART How it was developed 1 • Based upon standard scheme of (specialist) clinical neurological assessment derived from earlier neurophysiological observations in animals. • Hierarchical categorization of behavioural responses in patients suspected of being in VS, using 5 levels spanning the range - No response; ‘Pure reflexes’ including ‘startle’ responses; withdrawal and habituation responses; localising responses; and differentiating responses implying a conscious choice.

16. SMART How it was developed 2 • Initially reported in 1988. • In 2001-3, formal comparison between assessments every 2 months in 60 subjects over a 2 year period diagnosed clinically as being in VS using Clinicians’ assessments, the Western Neurosensory Stimulation profile and a refined updated version of SMART. • Repeated testing enabled consistency to be identified. Vision and hearing were particularly important in enabling awareness to be demonstrated. • 45% of referrals initially thought to be in VS showed evidence of conscious awareness, some being in MCS/MCA but others better than this.

17. SMARTImplications for Use 1 • A specifically trained and experienced MDT and prolonged observation (recommended minimum of 10 assessments over a 3 week period) in optimal conditions (re nutrition, medication, lack of intercurrent illness such as infection, positioning and appropriate combination of rest and stimulation) are essential. • Testimony of family and nursing staff is crucial. • Conclusion: PVS should not be diagnosed on the basis of brief or unsystematic clinical assessments.

18. SMART Implications for use 2 • If subjects are being considered for withdrawal of feeding to allow death to occur, the MDT must be trained to particularly high standards and be able to draw on a lot of shared training and experience. • Good relationships with family members is of prime importance. • Because of the serious moral and legal implications of the diagnosis of PVS, access to SMART is restricted to professionals who have been specifically trained to administer it.

19. SMART in Use 1 • SMART assessment and treatment can only be carried out by a registered accredited SMART assessor. The SMART accreditation process has been developed to ensure competency in the application of SMART. There are five steps to gaining accreditation: • Step 1 - Meet the Person Specification • Step 2 - Attend the five-day assessor training course • Step 3 - Complete a case study portfolio • Step 4 - Access to the SMART tool • Step 5 - Registration on the Accredited SMART Assessors Register

20. SMART in Use 2Equipment you will need Includes • Pencil torch, comb and pen • Photo of a baby • Toothbrush • Switch with computer connection • Blue and yellow cards • Yes/No cards and Instruction cards for all motor tasks • Wood blocks (sound) • Olfactory and gustatory stimuli incl garlic and coffee.

21. SMART in Use 3 Communication Lifestyle History Questionnaire • Name etc, languages understood/spoken, vision colourblind? Glasses? Hearing. Handedness. • Nicknames • Qualifications and where obtained • Job(s) and work colleagues • Living alone? With? • Close friends and relatives • Where lived since childhood • Amusing memories or incidents likely to be recalled

22. SMART in Use 4 Questionnaire continued • Personality, interests, likes and dislikes • Clubs and societies, Music? Social activities? • Personal achievements • Religious beliefs • TV, radio, newspaper and book preferences • Holidays • Likes and dislikes re food, drink clothes, pets • Useful info. when planning therapy or leisure activity? • PLUS detailed list of responses used in the test, for family to report those they themselves have noticed.

23. SMART in Use 5 Modalities (All responses assigned to one of 5 levels: None, Reflex, Withdrawal, Localising and differentiating or Obeying command from menu) • Visual • Auditory • Tactile • Olfactory • Gustatory

24. SMART in Use 6 Modalities (All responses assigned to one of 5 levels: 6 Motor Function (None, Reflex, non-purposeful spont. or withdrawal, Inconsistent spont. or localising and Consistent purposeful) 7 Functional communication (None, Non-specific, Specific, Inconsistent <5 occasions, Consistent >5 occasions) 8 Wakefulness and Arousal (depends on no. of prompts: No response, >5 prs, 2-4prs, 1pr, 0pr)

25. SMART Constraints (Version 1) • Restricted to trained staff • Identifying the Implications for rehabilitation is not intrinsic to the assessment itself • Scoring structure adopted from a different instrument • Testing is detailed and potentially prolonged and tiring. • Parts of the stimulation regime could be experienced as meaningless and lead to voluntary withdrawal from cooperation – so testing sessions must be combined with a high quality conventional rehabilitation approach in an appropriate environment throughout the assessment period

26. SMARTAdvantages in Use. • It is currently the best validated method for ensuring that people are not diagnosed as being in VS when they are conscious – provided it is combined with a high quality MDT approach in the right environment. • Encourages close sharing of essential personal information and understanding with family members. • Provides a helpful record of stage that has been reached when a patient transfers to a different environment. • Encourages interdisciplinary teamworking and professional development.

27. BUT

29. Recent advances in assessment of conscious awareness: Apparent PVS

30. References • WHIM Charts and instruction manual with references available from the Thames valley Test Company • SMART • Gill-Thwaites, H. 1997. “The Sensory Modality Assessment Rehabilitation Technique – a tool for Assessment and treatment of patients with severe brain injury in a vegetative state”, Brain Injury, 11 (10), pp.723-734.  • Gill-Thwaites, H. and Munday, R. 2004. “The Sensory Modality Assessment and Rehabilitation Technique (SMART). A valid and reliable assessment for the Vegetative and Minimally Conscious State Patient”, Brain Injury, 18 (12), pp.1255-1269.  • Gill-Thwaites, H. 2006. “Lotteries, loopholes and luck: Misdiagnosis in the vegetative state patient”, Brain Injury, 20 (13-14), pp. 1321-1328.