Music therapy assessment tool for awareness in disorders of consciousness (MATADOC): standardisation of the principal subscale to assess awareness in patients with disorders of consciousness.

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Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC): Standardisation of the principal subscale to assess awareness in patients with disorders of consciousness a

b

Wendy L. Magee , Richard J. Siegert , Barbara A. c

d

Daveson , Gemma Lenton-Smith & Steve M. Taylor

e

a

Boyer College of Music and Dance, Temple University, Philadelphia, PA, USA and Royal Hospital for Neurodisability, London b

School of Rehabilitation and Occupational Studies and School of Public Health and Psychosocial Studies, AUT University, Auckland, New Zealand c

Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, King's College London, UK d

Ealing Music Therapy, London, UK

e

School of Public Health and Psychosocial Studies, AUT University, Auckland, New Zealand Published online: 18 Oct 2013.

To cite this article: Wendy L. Magee, Richard J. Siegert, Barbara A. Daveson, Gemma Lenton-Smith & Steve M. Taylor (2014) Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC): Standardisation of the principal subscale to assess awareness in patients with disorders of consciousness,

Neuropsychological Rehabilitation: An International Journal, 24:1, 101-124, DOI: 10.1080/09602011.2013.844174 To link to this article: http://dx.doi.org/10.1080/09602011.2013.844174

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Neuropsychological Rehabilitation, 2014 Vol. 24, No. 1, 101–124, http://dx.doi.org/10.1080/09602011.2013.844174


Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC): Standardisation of the principal subscale to assess awareness in patients with disorders of consciousness Wendy L. Magee1, Richard J. Siegert2, Barbara A. Daveson3, Gemma Lenton-Smith4, and Steve M. Taylor5 1

Boyer College of Music and Dance, Temple University, Philadelphia, PA, USA and Royal Hospital for Neuro-disability, London 2 School of Rehabilitation and Occupational Studies and School of Public Health and Psychosocial Studies, AUT University, Auckland, New Zealand 3 Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, King’s College London, UK 4 Ealing Music Therapy, London, UK 5 School of Public Health and Psychosocial Studies, AUT University, Auckland, New Zealand (Received June 2012; accepted September 2013)

Establishing valid and reliable measures for use with patients with disorders of consciousness (DOC) following profound brain injury is challenging due to a number of factors including the complex presentation of such patients and assessor variability. The auditory modality has been demonstrated to have greater sensitivity for detecting awareness in DOC patients. However, there are no measures developed to assess auditory responsiveness specifically. The objective of this study was to examine the psychometric properties of the principal subscale of a music therapy assessment tool (MATADOC) developed for use with adult DOC patients. The subscale assesses behavioural domains essential for diagnosis of awareness. Twenty-one adult patients were recruited from a specialist rehabilitation unit. In a prospective study with repeated measures, internal consistency, inter-rater and test – retest reliability and dimensionality were examined. The five-item scale showed Correspondence should be addressed to Dr Wendy L. Magee, Boyer College of Music and Dance, Temple University, Presser Hall, 2001 North 13th Street, Philadelphia, PA 19122, USA. E-mail: [email protected] # 2013 Taylor & Francis

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MAGEE, SIEGERT, DAVESON, LENTON-SMITH, AND TAYLOR

satisfactory internal reliability (a ¼ .76) and a strong first principal component. Corrected item-total correlations were all . .45. Inter-rater intra-class correlations (ICCs) ranged from 0.65– 1.00 and intra-rater ICCs from 0.77– 0.90. Rasch analysis confirmed these impressions of a reliable, unidimensional and homogenous scale. Diagnostic outcomes had 100% agreement with a validated external reference standard. The results indicate that the MATADOC principal subscale provides a new behavioural measure that can contribute to interdisciplinary assessment of awareness with DOC patients.


Keywords: Music therapy; Disorders of consciousness; Assessment; Diagnosis; Awareness; Brain injuries; Vegetative state; Minimally conscious state.

INTRODUCTION This paper presents the standardisation of an assessment tool developed to measure responsiveness to auditory stimuli which are finely manipulated within a music therapy treatment protocol for patients with disorders of consciousness (DOC). The term DOC is used to encompass both the vegetative state (VS) and minimally conscious state (MCS) following severe brain injury. VS is a syndrome where the individual displays spontaneous arousal and sleep–wake cycles, but in the absence of behaviours indicating awareness of oneself or the environment, no interaction with others, and no sustained, purposeful or voluntary responses to sensory stimuli (Giacino & Kalmar, 1997). Reflexive behaviours are typically observed. More recently, a new nomenclature of “unresponsive wakefulness syndrome” (UWS) has been proposed as an alternative to VS due to the pejorative image associated with the term “vegetative” and the risk of permanent association of “unaware” with the patient to whom such a diagnosis is ascribed (Gosseries et al., 2011; Laureys et al., 2010). Individuals in MCS are in a condition of severely altered consciousness although they are able to demonstrate goal-directed behaviours associated with conscious awareness, thus providing evidence of awareness of self and their environment (Giacino et al., 2002). Cognitively mediated behaviours are present and distinguishable from reflexive behaviours, although these purposeful behaviours remain typically inconsistent and only sometimes reproducible. Recently, more sensitive subcategories have been proposed for this broad grouping based on the level of complexity of observed non-heterogenous behavioural responses: high level behavioural responses can be categorised as “MCS+” and low level responses as “MCS–” (Bruno, Vanhaudenhuyse, Thibaut, Moonen, & Laureys, 2011). Emergence from MCS is indicated when the person is able to demonstrate functional interactive communication and/or functional use of two different objects (Giacino

MATADOC: PRINCIPAL SUBSCALE

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et al., 2002). Disorders of consciousness can potentially be transient in nature (Giacino et al., 2002; Laureys et al., 2010) or chronic and irreversible (Bernat, 2009). Discrimination between reflexive behaviours, which are non-contingent to stimuli, and purposeful behaviours distinguish VS from MCS.


Diagnosis in DOC and the issues of assessment measures Although processes for diagnosis, rehabilitation and disability management of persons with DOC are advancing, the diagnosis process in particular remains a complicated matter (Gill-Thwaites, 2006) albeit a primary concern and aim of clinical intervention (Hirschberg & Giacino, 2011). The rate of misdiagnosis remains high, estimated at between 30% and 40% (Hirschberg & Giacino, 2011) increasing the risk of poor decision-making for disability management, inadequate future care planning, insufficient family support and threatening the continuation of life-preserving interventions (Magee, 2007b). Several factors complicate diagnosis, including inconsistent behaviours that are typical of both subcategories of the DOC population, existing volitional behaviours which may be masked by the profound motor and sensory impairments typical of this population, fluctuating arousal levels, and language impairments that cannot be accurately identified due to the complex motor, sensory and communication impairments (GillThwaites, 2006). It has been suggested that functional MRI scanning provides a more objective measure of awareness (Coleman et al., 2009). However, at present, there is still uncertainty about the accuracy of diagnoses resulting from such tests as technical difficulties remain (Laureys & Schiff, 2011). Assessments using behavioural methods are still considered essential, as multiple perspectives from convergent, independent sources are recommended in DOC diagnosis (Seel et al., 2010). The likelihood of receptive language impairment following severe brain injury questions whether language-based assessments are appropriate tools (Laureys & Schiff, 2011). This has resulted in an array of assessment measures examining responsiveness to multi-modal stimuli rather than primarily verbal language (Seel et al., 2010). Increasing interest has been taken in the auditory modality with this population, given its sensitivity in diagnosis (Gill-Thwaites, 1997; Gill-Thwaites & Munday, 1999; Owen et al., 2005), the prevalence of visual impairment following profound brain injury (Andrews, Murphy, Munday, & Littlewood, 1996), and the combination of these factors contributing to the complexity of diagnosis. The significance of auditory stimuli (verbal and non-verbal) in the assessment of DOC patients has been highlighted: there was international interest in a case of one “unresponsive” woman in VS who demonstrated brain activity comparable to healthy individuals in response to verbal requests to “imagine playing tennis” and “imagine visiting all the rooms in your

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home” (Owen et al., 2006). This case illustrates the potential significance of the auditory modality in the diagnosis of DOC and the progress that is yet to be made regarding accurate diagnosis of those with DOC.


Saliency and the use of sensory stimuli Using stimuli that hold personal meaning to the patient is a critical feature in DOC assessment. Visual tracking has been noted more to visual stimuli with emotional meaning, such as the reflection of one’s face, than to stimuli with less familiarity, such as a person moving in the patient’s environment (Vanhaudenhuyse, Schnakers, Bre´dart, & Laureys, 2008). However, discrepancy exists between expert opinions on whether visual pursuit in VS patients is a reflexive or conscious behaviour (Chatelle, Laureys, Majerus, & Schnakers, 2010) as the research with VS patients suggests that visual fixation does not necessarily indicate conscious interaction between the patient and his or her surroundings (Bruno et al., 2010). The use of auditory stimuli in assessment of consciousness is receiving increasing attention either with the use of calling names (Boly et al., 2004, 2005; Perrin et al., 2006; Schnakers et al., 2009), particularly the patient’s own name (Laureys, Perrin, & Bre´dart, 2007), or using musical stimuli (Boyle & Greer, 1983; Formisano et al., 2001; Jones, Vaz Pato, Sprague, Stokes, & Haque, 2000; Puggina & Paes da Silva, 2009; Verville et al., 2012; Wilson, Cranny, & Andrews, 1992). This supports the use of auditory stimuli with emotional familiarity in the assessment of people with DOC. Non-language-based auditory stimuli hold particular relevance given the complex communication and cognitive impairments typical of this population.

Music as a non-language-based medium for assessment Music is well-placed to be considered as an assessment medium with this population (Magee, 2007b) given its inherent emotion-inducing properties (Sloboda, 1991), particularly those linked with pleasure and reward (Blood & Zatorre, 2001). In addition to the possibility of structuring individually tailored treatment protocols using music of personal meaning, the use of live music enables the manipulation of specific parameters of auditory stimuli (e.g., volume, pitch, timbre) thus optimising the possibility for gaining a more accurate picture of the DOC patient’s auditory responsiveness (Magee, 2005). A number of empirical studies have examined the use of music with this population (see Magee, 2005). However, measuring responsiveness to musical stimuli in people with DOC faces the difficulties already outlined in the broader assessment issues with DOC to an even greater degree: standardised music-based assessments are not sensitive enough to detect the subtle and complex changes in DOC patients; and standardised tools for use with DOC populations do not examine auditory


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responsiveness to the degree of specificity which is possible in a music therapy assessment protocol.


The Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC) In response to the lack of sensitive tools to assess responses to finely manipulated auditory stimuli, the Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC, formerly the Music Therapy Assessment Tool for Low Awareness States or MATLAS) was developed for use with patients with DOC (Magee, 2007a). The tool includes 14 items that encompass five behavioural domains commonly assessed in DOC: motor responses, communication, arousal, and auditory and visual responsiveness, that are described in more detail here (see Table 1) and also have been described in detail previously (Magee, 2007a). The MATADOC is divided into three subscales with specific purposes. The Principal Subscale: Essential Categories (items 1–5) examines essential behaviours; the musical parameters subscale (items 6–7) informs clinical intervention; and a third subscale contains clinical items to inform goal setting and clinical care (items 8–14).

MATADOC rationale. Given the considerable attention to and critique of the existing assessment measures with this population (Seel et al., 2010) it must be questioned as to why a music-specific assessment is warranted. The tool under examination in this study was developed to assist with immediate local needs, i.e., structuring the behavioural observations made in music therapy sessions in order to contribute to interdisciplinary assessments. However, as time progressed it became apparent that a more refined assessment of auditory responsiveness was warranted to assist the interdisciplinary team in the assessment of complex cases; that is, cases where patients seemed to show differentiated responses to auditory stimuli but not to stimuli in other sensory modalities (see Magee, 2005, 2007a, 2007b for illustrations). It should be stressed that, in line with recommendations for best practice (Giacino et al., 2002), the MATADOC does not stand alone as a measure of awareness, but can contribute to the range of diagnostic assessments that are recommended for this complex population. Studies of DOC populations require standardised behavioural assessment and outcome tools (Laureys et al., 2010). There are a number of existing standardised tools and protocols for DOC, including the Sensory Modality Assessment and Rehabilitation Technique (SMART; Gill-Thwaites, 1997), the Wessex Head Injury Matrix (WHIM; Shiel et al., 2000) and the Coma-Recovery Scale–Revised (CRS-R;

Section of scale; Item title and number

Item purpose

Domain

Primary purpose

Visual

Assessment

Auditory

Assessment

Auditory

Assessment

Communication

Assessment

Arousal

Assessment

Auditory

Assessment

Principal Subscale: Essential Categories 1: Responses to Visual Stimuli

Documents responses to visual stimuli presented without an accompanying auditory component. Stimuli will be musically related, e.g., musical instruments; pictures of musical artists; pictures of favourite artists; assessor’s movements around the room without accompanying musical stimulus. 2: Responses to Auditory Documents responses to auditory stimuli presented without visual stimuli, e.g., isolated Stimuli musical sounds; familiar and unfamiliar songs; assessor’s spoken/singing voice; for assessing all evidence of residual hearing including startle responses. 3: Awareness of Musical Records behavioural and musical responses that provide evidence of the patient’s Stimuli awareness of the music (live or recorded); responses may vary from no awareness of musical stimuli, through to a more developed awareness of changes in the assessor’s music during musical exchanges. 4: Response to Verbal Records responses to one-step verbal commands to follow an active behaviour that has not Commands been observed to occur spontaneously in observation periods. Commands are used that the patient can potentially achieve. 5: Arousal Documents the proportion of the session that the patient is aroused as demonstrated through having eyes open and being alert. Musical parameter and behavioural response type 6: Behavioural Response to Music

Documents all observable cognitively mediated behaviours at the initial presentation of musical stimulation or throughout other periods within the assessment session. Aims to record differential responses, i.e., behaviours which occur contingent to musical stimuli. Behaviours include changes in facial gesture; change in eye direction/eye contact; change in physical movement; change in vocalisation; change in respiration; or change in arousal.



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TABLE 1 Descriptors of the titles, purpose and domains of the 14 items of the MATADOC

Records specific information about responses to musical parameters. Useful for collecting information to inform subsequent music therapy interventions specifically tailored to meet the patient’s responses. Clinical information to inform goal setting and clinical care

Auditory

Assessment

8: Vocalisation

Communication

Treatment

Communication

Treatment

Communication

Treatment

Motor Arousal/Motor/ Auditory

Treatment Treatment

Motor Communication

Treatment Treatment

9: Non-verbal Communication

10: Choice-making

11: Motor Skills 12: Attention to Task

13: Intentional Behaviour 14: Emotional Response

Documents the patient’s vocal activity (including reflexive behaviours and cognitively mediated responses). Documents observed responses pertaining to non-verbal social communication responses that might include: eye contact within social exchanges (as opposed to fixed eye gaze); interactive physical gesture; purposeful communicative facial gestures; non-verbal/ musical turn-taking; or interactive musical responses that are clearly related to the assessor’s sounds/music/or silence within a music structure. Establishes the ability to discriminate between a forced choice of two alternatives presented using the communication strategy used by the treatment team. Procedures are staged sequentially from looking towards a single object to communicating a preference between more than two objects. Concrete objects presented include musical instruments, pictures of performance artists, or single words as matched to communication strategy. Documents observed physical responses to musical objects, sounds and music presented. Monitors volitional behaviours denoting attention (focused or sustained) during tasks involving musical stimuli, be they auditory (e.g., musical sounds) or combined auditory/ visual. Behaviours include intentional active eye gaze to a stimulus, hand/eye coordination, movement related to musical activity, or engaging purposefully with an instrument. Documents observed goal-oriented behaviours. Documents emotionally expressive behaviours that are contingent to musical stimuli including facial gestures, tears, and vocalisations.



7: Musical Response

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Giacino, Kalmar, & Whyte, 2004). The protocols of these tools are inadequate for measuring sensitive manipulations of auditory stimuli, which can be achieved within a music-based assessment. Researching interventions with DOC where auditory stimuli are manipulated requires several particular features. First, measures need to be sensitive enough to discriminate between minimal responses typical of the DOC population and meet all other requirements for evidence-based assessments as outlined by Seel et al. (2010). Second, measures need to measure specifically responses to auditory stimuli. Third, the procedures involved should be both well-defined and able to manipulate auditory components in a way to provide meaningful information. Current assessment protocols (e.g., CRS-R, SMART, WHIM) do not manipulate components of auditory stimuli, but rather use loud sudden sounds (e.g., clapping hands) or generalised auditory stimuli such as calling the patient’s name. Music is a useful tool for examining non-musical functional behaviours with this population (e.g., arousal, motor responses, visual responsiveness) as well as musical behaviours which can be indicative of nonmusical functional behaviours (e.g., non-verbal communication, vocalisation, see Magee, 2005). Thus, for reasons of validity, assessments of auditory responsiveness would benefit from using music-specific parameters. Only tools that are sensitive and specific to the stimuli being used will reflect a patient’s optimal functioning. The development of a standardised tool will enable further investigations into music as a diagnostic tool and treatment modality with this population which has not previously been possible. Previous investigations have struggled with the aspect of measurement, finding existing standardised tools too insensitive to yield significant results necessitating the development of music-specific tools (Formisano et al., 2001) or relying on single case designs using individalised behavioural measures (Boyle & Greer, 1983; Formisano et al., 2001; Wilson et al., 1992). Valid tools with standardised protocols delivered by those with appropriate training and experience are important when working with populations whose incidence is small enough to necessitate multisite (and often international) studies.

MATADOC protocol and scoring. A defined treatment protocol uses a range of musical stimuli, including single auditory stimuli, complex musical sounds, and musical activities to measure a broad range of functional non-musical behaviours (Magee, Lenton-Smith, & Daveson, 2012). Delivering the protocol requires advanced competency in the clinical application of music and clinical experience with DOC populations. All tasks use music, which is predominantly presented live, although recorded music is occasionally used. The musical stimuli employ both music that is known to be personally meaningful to the patient and unfamiliar novel music which is based on



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the patient’s physical presentation, e.g., aligning the musical tempo with the patient’s breathing rate. The protocol involves a minimum of four tasks to assess the items on the principal subscale. This subscale examines behaviours that are essential for demonstrating awareness. However, depending on patient tolerance (e.g., arousal) and responsiveness, the protocol can be extended to seven tasks. This means that during the process of MATADOC assessment all patients are presented with the initial four tasks that examine preliminary responsiveness across the auditory, visual, communication and arousal domains and can be rated on the principal subscale. For patients who demonstrate little or no responsiveness to the four tasks in the principal subscale and may not be able to tolerate a longer assessment (i.e., longer than approximately 12–15 minutes), the assessment can be brief in duration. For patients who demonstrate tolerance for longer sessions, and particularly those who show responsiveness in the first four tasks, additional tasks are presented that assess responses more clearly aligned with MCS/MCS emergent states. In this way, the MATADOC can assess the lowest level responses typical of VS patients, but can be expanded to provide assessment tasks for patients who are demonstrating responses typical of MCS and MCS emergent patients. Rating all 14 items for each patient on every clinical contact is essential however, due to the inconsistent responses that are typical of this population. Thus, it is possible for a largely unresponsive patient to demonstrate occasionally behaviours that are associated with higher levels of awareness (e.g., MCS) and these require careful documentation for interdisciplinary consideration to identify any patterns across interventions. Although the data of behavioural ratings from the MATADOC are transformed into three scores, one for each subsection of the tool, only the Principal Subscale score holds any diagnostic utility; the other subscales inform treatment planning and goal setting and thus hold primarily clinical utility. Comparison of the MATADOC with existing DOC measures. Recommendations for diagnosis encourage the use of several different assessment tools as the use of a single DOC assessment may prove less accurate than using multiple assessments (Seel et al., 2010). Best practice also recommends that assessments use a broad range of stimuli to elicit a range of different responses (Giacino et al., 2002). Within musical tasks, vocalisations can be assessed for evidence of behaviours that are volitional and related to the environment, thus bypassing the need for motor function which has been found to confound accurate scoring in other assessments. Stimuli that have personal meaning have been found to produce the greatest behavioural change in DOC populations (Boly et al., 2005; Shiel & Wilson, 2005), thus assessment using musical stimuli can optimise emotionally salient stimuli that are primarily non-verbal in nature, addressing the problems inherent in


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language-based measures for DOC populations. Although musical stimuli could be used during the existing standardised assessments (e.g., CRS-R, SMART), protocols to ensure consistent testing are lacking. Furthermore, the tools are not structured to adequately capture subtle behaviours indicating patient responsiveness to musical stimuli, e.g., vocalising at pitch to environmental sounds. In addition, the MATADOC places primary emphasis on the communication domain (five items) and auditory domain (five items) which distinguishes it from the available standardised DOC assessment tools such as the SMART (Gill-Thwaites, 1997), the WHIM (Shiel et al., 2000) and the CRS-R (Giacino et al., 2004). However, the MATADOC also includes items that assess the visual, motor and arousal domains as, in combination with auditory and communication function, these five domains are commonly included in DOC assessment (Seel et al., 2010). Furthermore, neglecting to capture data across these domains during multimodal stimulation risks missing the inconsistent behaviours that typify the population in question (Seel et al., 2010). Thus the overlap between the MATADOC and the existing DOC measures is intentional in order to provide a comprehensive assessment, in addition to a providing a more sensitive assessment of the auditory domain and behaviours indicative of non-verbal communication. The MATADOC administration is another point of difference, taking less time than the SMART for administration. On average, a MATADOC assessment takes 90 minutes per patient to complete (O’Kelly & Magee, 2013). This is completed in four contacts over one 10-day period. This is in comparison to approximately 600 minutes over 10 occasions in 21 days for the SMART (Gill-Thwaites & Munday, 1999) with the required number of administrations specified as opposed to the CRS-R and WHIM that lack clear guidance (Godbolt, Stenson, Winberg, Frykberg, & Tengvar, 2011). A pilot study comparing MATADOC outcomes with scores gained from the SMART (Gill-Thwaites, 1997) and the WHIM (Shiel et al., 2000) found strong concurrent validity with significant correlation (p , .01) ranging from .84 (WHIM) to .968 (SMART) (Daveson, Magee, Crewe, Beaumont, & Kenealy, 2007). These findings warranted a more detailed comparison specifically between items that assessed similar domains from the MATADOC and the SMART to examine sensitivities of each measure. An audit of 42 cases examining SMART and MATADOC outcomes from concurrent assessments compared the scores of related items from each of the measures to explore item sensitivity (O’Kelly & Magee, 2013). This audit drew from a large sample of retrospective records including data that were collected over a longer timeframe (i.e., MATADOC commencing days 10– 20 of the commencement of SMART) and also drew from data collected for this current study where the assessments were administered within a shorter timeframe (i.e., MATADOC commencing between days 1–10 of



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the commencement of SMART). Items were compared that rated behaviours in the domains of visual, auditory and motor responsiveness, arousal and communication as well as overall diagnostic outcomes. A strong correlation was found between MATADOC and SMART diagnostic outcome in the cohort (rs ¼ .80, p , .01, 2-tailed) that ranged across VS, MCS and borderline VS/MCS. As the SMART is a validated assessment tool for DOC populations, this finding suggests that MATADOC has content validity for being sensitive to behaviours representative of VS, MCS and MCS emerging behaviours as outlined in the Aspen Workgroup criteria (Giacino et al., 2002). Although the SMART was found to have heightened sensitivity for the motor domain in relation to diagnosis when compared to the MATADOC, the MATADOC showed heightened sensitivity for the auditory and visual domains. Scoring sensitivities may have contributed to these findings, as the MATADOC offers smaller variations in the ratings for some items than the SMART. Overall the assessment tools were found to have contrasting sensitivities in different domains and also to record data on domains that are mutually exclusive (O’Kelly & Magee, 2013). The current study reported here tested the reliability, internal consistency and external validity of the MATADOC principal subscale specifically. Testing the MATADOC principal subscale. In line with standardised DOC assessment scales, the Principal Subscale: Essential Categories of the MATADOC can be compared with items on other DOC scales to examine visual and auditory responsiveness, arousal, as well as responses to verbal commands. This overlap with existing assessment tools was purposeful in order to contribute to interdisciplinary assessments of awareness, following recommendations that patient responsiveness is examined in different environments with contrasting stimuli and using a number of different tools to measure responsiveness (Giacino et al., 2002). An additional item on this subscale examines specific responses to musical stimuli (see Figure 1). These comparable features of the MATADOC principal subscale to other DOC assessment tools and the promising concurrent validity found with SMART (Daveson et al., 2007) suggested that this particular section of the MATADOC was worth evaluating independently. This seemed important given the different ratings systems used between the subscales (Guttman and binary) and differences in the methods and relevance of scoring between subscales: the latter subscales have clinical rather than diagnostic utility. Addressing evidence-based requirements in the MATADOC. This study aimed to address several essential criteria that have been recommended for evidence-based behavioural assessment scales utilised in DOC populations (Seel et al., 2010). The MATADOC has a comprehensive manual and a


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Figure 1. The MATADOC Principal Subscale: Essential Categories.

clearly defined protocol enabling consistent administration and scoring of items (Magee et al., 2012), and provides interpretive guidelines that fit the Aspen Workgroup consensus-based diagnostic classifications (Seel et al., 2010). Second, the pilot study (Daveson et al., 2007) demonstrated that the behaviours outlined in the MATADOC entire scale are representative of VS, MCS and MCS emerging behaviours as outlined in the Aspen Workgroup criteria (Giacino et al., 2002). Thus, the scale addresses content validity. Third, we addressed contributory sub-factors for establishing reliability by including information about the assessors’ duration of clinical experience with DOC populations; assessors’ level of training in using assessment measures; and minimising the interval between scale administrations when examining test –retest reliability (TRR) due to the characteristic progression in state of consciousness for this population (Seel et al., 2010). This study aimed to examine inter-rater reliability (IRR) and TRR, as well as internal consistency. Factors to minimise bias in data collection are reported (see


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Methods section). Fourth, evidence-based recommendations specify that construct validity is established using Rasch analysis where appropriate to the data, which was implemented in the study reported here. Lastly, we aimed to examine criterion validity by comparing the MATADOC to an external reference standard (the SMART).


Purpose of the current study The purpose of this study was to examine the psychometric properties of the principal subscale of the MATADOC (reliability, repeatability, dimensionality and validity) in a prospective study across the domains of visual and auditory responsiveness, arousal, and responses to verbal commands and musical stimuli. The research also aimed to examine the internal structure and internal consistency of the principal subscale. In this regard we used both traditional psychometric methods and modern item-response methods (i.e., Rasch analysis; Nunnally & Bernstein, 1994). While Rasch analysis is increasingly used in rehabilitation and strongly advocated by some authors (Hobart, Cano, Zajicek, & Thompson, 2007; Pallant & Tennant, 2007), it is still unfamiliar to many clinicians and researchers compared to classical test theory methods (such as factor analysis). Moreover a robust measure should arguably stand up to scrutiny using either of these approaches (Siegert, Jackson, Tennant, & Turner-Stokes, 2010). Hence in the present study we used both. Lastly, the study aimed to conduct a validity analysis by comparing the item scores and diagnostic outcomes of the MATADOC and SMART, with specific comparison between items examining similar behavioural domains from each measure, e.g., auditory responsiveness, visual responsiveness, and arousal, but within a narrower time frame in line with recommendations for validity research with DOC populations (Seel et al., 2010).

METHOD Participants Participants were recruited using convenience sampling from admissions to a specialist unit for DOC over 36 months. Patients were admitted to this unit with diagnoses of DOC but without any confirmed level of DOC, i.e., VS, MCS or MCS emerging. Admissions were for the purposes of diagnosis, disability management and, where appropriate, rehabilitation. Patients were typically admitted from acute general medical settings where there are no specialist skills for assessing or treating people disabled to this level of profundity. Thus, patients were typically admitted without specialist seating systems and without an assessment of cognitive capacity due to the level of disability.


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The inclusion criteria were medically stable patients admitted to the unit for diagnosis of awareness state, between the ages of 16 and 70 years of age. A diagnosis of awareness (i.e., VS, MCS or emergent) had not been confirmed for all patients recruited to the study. Participants excluded were those who had known pre-morbid hearing impairments, had a previous diagnosis of musicogenic epilepsy, had previously refused music therapy intervention, emerged from DOC during recruitment or assessment, or had a suspected diagnosis of locked-in syndrome. Mental capacity assessments were completed before recruitment and standard procedures regarding the recruitment of patients lacking capacity were followed. Ethical aproval was gained from the National Research Ethics Service (05/Q0406/185).

Assessors Seven MATADOC assessors were involved in data collection, their experience with DOC populations ranged from 0.25 to 19 years (mean ¼ 3.5 years). All assessors received training in both delivering the treatment protocol and completing the assessment rating prior to commencing involvement in the study. In each session, one assessor delivered the assessment protocol and completed an assessment rating, and a second assessor observed and completed an assessment rating.

Protocol Each participant received one complete MATADOC assessment, involving four individual sessions within a 10-day period. Sessions were scheduled in accordance with the participant’s rehabilitation programme and thus took place at different times across a working day between 10.30 and 15.00 hours. Three-minute observation periods were conducted at rest pre- and post-treatment. The treatment protocol followed clearly defined procedures, involving the presentation of primarily live music and occasionally the use of recorded music (Magee et al., 2012). Musical stimuli involve both familiar music known to be salient (i.e., personally meaningful to the participant) as well as unfamiliar music based on the participant’s behavioural presentation, e.g., breathing rate, vocal sounds, physical movements. Session duration was between 12 and 25 minutes dependent on the participant’s arousal and behavioural responsiveness. Every MATADOC session assesses the five essential behavioural domains in addition to a further nine items which examine higher level behaviours including musical behaviours elicited by the stimuli. Each session was rated independently by two trained assessors (one who delivered the protocol) using the MATADOC assessment schedule for inter-rater reliability analysis. In this study, the assessors were music therapists registered with the UK Health Professions Council. Assessors were blind to each other’s ratings and one or both assessors were blind to the



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participant’s clinical status and progress in interdisciplinary assessment. Additionally, sessions were video recorded enabling rating to take place by the same two assessors independently at a later date (between 4 and 24 weeks) for test –retest reliability. Thus, each single session was rated during live and video conditions by each assessor, producing four data sets for a single clinical contact. In this way, 16 data sets were achieved for one complete MATADOC assessment for each of the 21 participants. The viewing order of each participant’s video records was randomised to assist with blinding for TRR. All data were anonymised, entered into an EXCEL spreadsheet and imported into SPSS for statistical analysis (GLS). The Rasch analysis was completed using RUMM2020 software by an analyst who was blind to all aspects of data collection and data entry (RS). Apart from the IRR and TRR calculations, all the remaining psychometric analyses were completed using the responses from the 168 live ratings of patients. This provided 168 separate scores on each of the five items for analysis. We did not use the remaining 168 video ratings for these analyses since they could not be considered completely independent. Bias was minimised for IRR and TRR through addressing independence of assessors, anonymisation of data, adequate time between test and retest conditions, randomisation of the viewing order of video records and blinding for all those involved in data management and analysis.

RESULTS Sample Twenty-one research participants (11 male, 10 female) were recruited, with ages ranging from 19–67 years (mean ¼ 40.3 years, SD ¼ 15.65). Twentyseven potential participants were identified, however, six were excluded as a diagnosis of DOC could not be confirmed or was contradicted. An unconfirmed diagnosis of awareness was essential for inclusion in order to test the validity of the MATADOC. Table 2 provides descriptive data for the characteristics of the people recruited to the study. The majority of the cases had sustained traumatic brain injury (n ¼ 9; 42.9%), then hypoxicischaemic brain damage (n ¼ 7; 33.3%), followed by haemorrhagic damage (n ¼ 3; 14.3%) and viral infection (n ¼ 2; 9.5%). Individuals in the recruited sample were assessed over four contacts using the WHIM (Shiel et al., 2000) to gauge behaviours indicative of severity of disability and emergence from DOC. The range of scores was from 0 (eyes open briefly) to 14 (Mechanical vocalisation with yawn, sigh, etc.) with mode and median of 4 (n ¼ 14; Attention held momentarily by dominant

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TABLE 2 Patient cohort recruited to the study

Patient number

Gender

Age

Nature of brain damage

1 2 3 4 5 6 7 8

M M M M M F F M

21 25 60 23 19 42 19 48

9 10 11 12 13 14 15 16 17 18 19 20 21

F F F F F M M F M M M F F

27 37 35 47 59 36 65 58 44 45 23 67 46

Severe TBI Severe TBI Hypoxic ischaemic encephalopathy Severe TBI Drug overdose Hypoxic brain injury TBI Tempero-parietal occipital AVM following post-operative brain haemorrhage TB meningitis and hydrocephalus TBI Anoxic BI following CA Subarachnoid haemorrhage TBI following a fall Hypoxic brain injury TBI Pneumococcal pneumonia TBI Anoxic BI following CA Diffuse TBI following RTA Hypoxic brain injury Cerebral aneurysm haemorrhage

Time since incident (months)

English 2nd language

7 8 5 10 9 8 13 5

No No Yes No No Yes No No

15 6 6 8 5 6 16 10 7 5 6 5 5

No Yes Yes No No No No No No No No No No

TBI: traumatic brain injury, AVM: arteriovenous malformation, TB: tuberculosis, BI: brain injury, CA: cerebral aneurysm, RTA: road traffic accident.

stimulus). Thus, the sample was profoundly disabled and demonstrated behaviours that can be classified within the VS to MCS range. Time between the onset of brain injury and the first MATADOC assessment spanned 5–16 months (mean ¼ 7.9 months; SD ¼ 3.3). All patients presented with absent or no consistent means of communication; being unable to follow commands; and complete dependence for all activities of daily living including mobility. All participants were receiving standard rehabilitation in addition to MATADOC that commenced at the same time as or prior to the MATADOC. Patients were assigned a diagnosis of awareness with the MATADOC ranging across VS (n ¼ 13) and MCS (n ¼ 8) with no patients diagnosed as emergent. These diagnoses were in 100% agreement with SMART assessments completed with the same cohort at the same time by an independent SMART assessor in line with standard rehabilitation at the


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unit. The SMART and MATADOC assessors were blinded to the outcomes of the other’s assessment.


Reliability IRR was based on 336 separate observations: two conditions (live and video) by two independent assessors at four time points/sessions for 21 participants. The following rating schemes are drawn from those used by the DOC task force (Seel et al., 2010). Intra-class coefficients (ICC) ranged from 0.65– 1.00 (mean ¼ 0.83, SD ¼ 0.11) for IRR, with all ICC falling between 0.77–1.0 excluding one single ICC of 0.65 (see Table 3). These results indicate good IRR. TRR results indicated 0.77–0.91 (mean ¼ 0.82, SD ¼ 0.05) which is rated as good (Seel et al., 2010). Based on 168 live observations Cronbach’s alpha for the 5 item scale was .76, which is rated as good for a 4–6 item scale (Seel et al., 2010).

Dimensionality Corrected item-total correlations were all significant and positive ranging from .46 (Arousal) to .64 (Responses to Auditory Stimuli). A strong principal component was evident with all five items loading above .64 on the first component extracted (see Table 4). TABLE 3 Intra-class correlations for inter-rater and test-retest reliability ICC INTER-RATER MATADOC 1 x MATADOC Obs 1 MATADOC 2 x MATADOC Obs 2 MATADOC 3 x MATADOC Obs 3 MATADOC 4 x MATADOC Obs 4 MATADOC Vid 1 x MATADOC Vid Obs 1 MATADOC Vid 2 x MATADOC Vid Obs 2 MATADOC Vid 3 x MATADOC Vid Obs 3 MATADOC Vid 4 x MATADOC Vid Obs 4

0.78 0.77 1.00 0.87 0.84 0.92 0.80 0.65

TEST– RETEST MATADOC 1 x MATADOC Vid 1 MATADOC 2 x MATADOC Vid 2 MATADOC 3 x MATADOC Vid 3 MATADOC 4 x MATADOC Vid 4 MATADOC Obs1 x MATADOC Vid Obs MATADOC Obs 2 x MATADOC Vid Obs 2 MATADOC Obs 3 x MATADOC Vid Obs 3 MATADOC Obs 4 x MATADOC Vid Obs 4

0.90 0.83 0.80 0.78 0.83 0.91 0.77 0.77

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TABLE 4 Inter-item correlations, item-total correlations, item loadings on first principal component and item locations from Rasch analysis

Visual Auditory Awareness of Musical Stimuli Verbal Commands Arousal

Awareness of musical stimuli

Visual

Auditory

1.00 0.47 0.40

1.00 0.48

1.00

0.45 0.37

0.50 0.42

0.43 0.39

Verbal commands

1.00 0.27

1st principal component

Item-total correlation

Rasch item location

0.74 0.80 0.74

0.56 0.64 0.56

0.28 1.75 0.67

0.73 0.65

0.52 0.46

0.39 23.09

Rasch analysis The initial Rasch analysis showed all five items demonstrated good fit to the Rasch model with all the individual item fit residuals falling within the commonly accepted fit criteria (i.e., between + 2.5). However overall model fit (i.e., item–trait interaction) was not as good (x2 ¼ 21.22, df ¼ 10.00, p , .02) (see Table 5). Moreover, inspection of the item characteristic curves showed that two items had disordered thresholds (Awareness of Musical Stimuli, Response to Verbal Commands). Consequently, these two items were rescored (Item 3 as 0, 1, 2, 3, 3, 4 and Item 4 as 0, 1, 1, 2) and the analysis repeated. After rescoring both items to obtain ordered thresholds, the overall model fit was good (x2 ¼ 14.519, df ¼ 10.00, p , .15) (see Table 5) as were all five individual item fit statistics. Inspection of the inter-item residual correlation matrix showed minimal evidence of local dependency, with only a single correlation above .3 (item 3 Awareness of Musical Stimuli and item 5 Arousal), and all correlations below .4. As a further test of unidimensionality, person estimates from the two highest positive loading items on the first residual component were compared with the estimates derived from the two highest negative loading items, with both sets calibrated on the same metric. TABLE 5 Summary test-of-fit statistics for initial MATADOC analysis and after rescoring items 3 and 4

Item residual

Person residual

Chi-square interaction

Analysis No.

Value

SD

Value

SD

Value (df)

p

Person separation

1 2

– 0.236 – 0.306

1.362 1.386

– 0.291 – 0.347

0.767 0.868

21.218 14.519

.02 .15

0.82 0.80



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Figure 2. Person-Item threshold distribution for MATADOC.

Of the 155 t-test comparisons only three (1.94%) were significant. This is well below the commonly accepted criterion for unidimensionality of 5% (Tennant & Pallant, 2006). Figure 2 presents the distribution of the person locations mapped against the distribution of the item thresholds with both distributions on the same Rasch-derived interval scale. Inspection of Figure 2 shows that the thresholds span the full spectrum of consciousness evident in this sample with most item thresholds working in the middle and upper end of the range of consciousness.

Validity There was 100% agreement between the diagnostic outcomes achieved using the SMART and the MATADOC concurrently, demonstrating significant association between the two (see Table 6; p , .001). Diagnoses were distributed across VS and MCS, indicating the MATADOC’s sensitivity in differentiating MCS from VS. No diagnoses of MCS emerging were detected. Although we aimed to examine item comparisons between items of the two measures TABLE 6 Comparison of diagnosis between MATADOC and external reference standard SMART diagnosis MATADOC diagnosis

VS

MSC

VS MSC

13 0

0 8

Fisher’s exact test shows significant association (p , .001). Cohen’s kappa ¼ 1. Spearman’s rho ¼ 1.

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rating related behavioural domains, missing data for the SMART and the small sample size (n ¼ 21) prevented meaningful analysis within this study.


DISCUSSION This study examined the IRR and TRR of the principle subscale of a new measure that assesses responsiveness in DOC populations with greater sensitivity to measuring auditory responsiveness to a protocol that uses primarily musical stimuli. The results suggest that the principal subscale of the MATADOC holds good IRR and good repeatability demonstrating TRR. The research involved seven assessors who each functioned as observer-rater and/ or the rater who administered the protocol. Reliability for DOC measures is dependent on protocols with adequate operational definitions as well as raters who are trained in the protocol’s use. The reliability suggests that both the protocol and the measure meet these standards. The measure can therefore be administered reliably across raters with varying years of experience with DOC populations who have been trained to a recognised level of competency in its use. The internal consistency of the five items as a principal subscale is satisfactory. Both principal component and Rasch analyses confirmed the MATADOC principal subscale as a robust unidimensional and homogenous subscale for assessing awareness in patients with DOC. Rasch analysis also clarified the hierarchy of item difficulty suggesting the most likely order in which the items will become achievable by patients emerging from disorders of consciousness. The person separation index from the Rasch analysis shows that the five items of the principal subscale discriminate well among persons at different levels of consciousness. These findings indicate the measure’s sensitivity in differentiating between patients demonstrating responses typical of VS and MCS, although sensitivity in further differentiation of responses indicative of MCS emergent have not been demonstrated. The diagnostic outcomes of the MATADOC had 100% agreement with an external reference standard that is validated for assessing awareness. However, differences in the function of comparable items across the measures could not be explored in this study due to the sample size and the prevalence of missing data for the external reference standard. Given the complexity of this population, the level of agreement between the two measures supports the use of the MATADOC in the clinical care of people with DOC, and a tool for specifically researching the role of auditory stimuli in the diagnosis of DOC. Testing the strength of the MATADOC principal subscale initially was important as these five items examine behavioural domains that are important indicators of awareness in other validated assessment measures for DOC (Daveson et al., 2007; Seel et al., 2010). Specifically, the items examine visual responsiveness, arousal, and auditory responsiveness, including



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responses to verbal and non-verbal musical stimuli. Given the strength of this subscale, the analysis of IRR and TRR for all 14 items of the MATADOC is warranted. However, psychometric testing of the remaining two subscales is not a priority given the differences in scoring and their emphasis on clinical rather than diagnostic utility. This investigation focused on the potential of the MATADOC as a diagnostic tool, which is the priority issue in the care of people with DOC. However, the MATADOC functions as a tool for measuring patient progress over time as well as an assessment for use in an interdisciplinary programme. In line with evidence-based recommendations for DOC assessment scales for having items that cover behaviours representative of VS, MCS and MCS emergent and the ability to distinguish between these categories, the other items on the MATADOC (i.e., items 6–14) assess “higher” level responses such as communication, social behaviours, cognition, and attention, which have been included in some other DOC scales (Shiel et al., 2000). Thus, although it was not demonstrated in this study, the tool may hold potential to evaluate responsiveness indicative of emergence from DOC in addition to having sensitivity to measure changes within the VS/MCS categories. The items yet to be assessed specifically contribute to goal setting (items 8–14) and responses to musical stimuli in order to formulate individually tailored treatment (items 6–7). So, the measure records which musical parameters elicit responses. In this way, treatment can be tailored within an interdisciplinary programme to the patient’s emergent strengths if they progress through the DOC categories and emerge from MCS. The MATADOC can be considered an objective tool as operational definitions have been provided for the protocol and the ratings. Furthermore, the behavioural nature of the scale enhances the information that may be gained from observing patients in musical conditions. Auditory responsiveness in DOC populations has received particular attention historically (Boyle & Greer, 1983) as well as recently (Verville et al., 2012) and it is relevant that music has remained a stimulus of interest for 30 years. Music’s value as an assessment medium with this complex population has been proposed (Magee, 2007b) and explored to some degree (Boyle & Greer, 1983; Formisano et al., 2001; Jones et al., 2000; Puggina et al., 2009; Verville et al., 2012; Wilson et al., 1992). However, without objective measurement tools that are sensitive to the population’s needs and can optimise the capacity for manipulating auditory components, this has remained as conjecture. The development of a standardised tool will address this.

Conclusion The standardisation of this new subscale is clinically relevant as MATADOC holds particular sensitivity for the auditory modality and this modality has

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been found to be more sensitive for detecting awareness in DOC populations (Gill-Thwaites, 1997). Therefore, MATADOC should be used within interdisciplinary assessment of awareness in patients with DOC and rehabilitation of this population to complement existing DOC measures that may be less sensitive to assessing the auditory modality. Furthermore, as the first standardised measure for assessing responses to musical and auditory-specific stimuli with this population, this tool will enable research on the outcomes of musicbased interventions with DOC populations.

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