The value of the whole picture: rehabilitation outcome measurement using patient self-report and clinician-based assessments after spinal cord injury

To explore the relative impact and contribution of using both the Spinal Cord Independence Measure III (SCIM) and Stoke Mandeville Spinal Needs Assessment Checklist (SMS-NAC) to assess

rehabilitation outcome following an acute spinal cord injury (SCI).

The study was performed at National Spinal Injuries Centre (NSIC), Stoke Mandeville Hospital, Buckinghamshire Healthcare NHS Trust, Aylesbury, UK.

A patient self-report SMS-NAC and clinician-rated SCIM were administered on admission and discharge from the NSIC as part of standardised care. This paper presents a retrospective analysis

of the rehabilitation outcomes of 195 people with spinal cord injury (PwSCI) following their first admission.

In both measures, PwSCI improved from admission to discharge. Individuals with higher SCI obtained lower scores in both measures, at both admission and discharge. The SMS-NAC demonstrated

the greatest increase in knowledge and skill for PwSCI who had higher and more complete injuries. On the SCIM, PwSCI who had lower and less complete injuries demonstrated the greatest

increase in outcome.

Overall, both measures demonstrated responsiveness to change during SCI rehabilitation and enable clinicians to systematically determine areas to focus rehabilitation effort. The relative

strengths and contribution to delivering person-centred care for each are identified. The SMS-NAC enables clinicians to record, for people with higher injuries, their subjective self-report

of skill and knowledge gains from rehabilitation that may be missed with other measures. Consequently, using both is encouraged in appreciation of the value of recording verbal

(instructional) independence as well as functional (physical) independence.

Formal measures that assess and monitor individuals’ progress through rehabilitation are increasingly utilised by clinicians as good clinical practice to demonstrate outcomes [1], and are a

means of informing service-users, clinicians and policy makers about effectiveness and influencing service development [2]. Furthermore, rehabilitation measures that offer valid meaningful

change can be a clinical intervention in and of itself, rather than solely an outcome tool, and aids services’ engagement of users to understand their changed health condition, set goals,

support the development of self-management and facilitate adjustment [1]. Within spinal cord injury (SCI) rehabilitation, a range of measures exist that evaluate an individual’s progress

with significant variation between them in the domains assessed and practical aspects of administration, training and cost [3]. Understanding the effectiveness of SCI-specific measures is

vital for informing selection and application; this needs to go beyond a measure’s psychometric properties and should also consider clinical efficacy, particularly specificity to reflect the

complex nature of rehabilitation progress across level and completeness of SCI.

Due to the complex nature of SCI, and diverse demands of living in the community, a biopsychosocial rehabilitation model is most commonly adopted by specialist spinal cord injury centres

(SCICs). This incorporates physical, social and psychological domains to encourage individuals to gain as much independence as possible [4], and skills and knowledge from a range of clinical

specialties and disciplines [5]. Outcome measures therefore need to have breadth, as well as specificity, and include physical health, functional tests, as well as tools to monitor

psychological adjustment, mood and participation [6]. Through SCI rehabilitation, individuals learn to comprehend their changed health needs and in turn develop a vast array of new skills to

live life well. Measures therefore need to also include ways to capture self-management skills and the knowledge progress that occurs during rehabilitation, which interacts with the

significant psychological and social adjustment necessitated by injury.

Increasingly, SCI settings have adopted an inclusive person-centred approach to rehabilitation, which includes the individual in setting their goals in partnership with the clinical team [6,

8,9,10]. Equipping individuals with a role in managing their condition, facilitating a sense of control, self-efficacy and empowerment in enacting long-term change, has been found to

improve adherence, satisfaction with care and greater physical gains and psycho-social adjustment during and after rehabilitation [7, 8, 10,11,12]. Consequently, outcome measures should also

be able to reflect the individual’s values and priorities, and serve to involve and inform people with spinal cord injury (PwSCI), in order to develop self-management skills as part of a

holistic, biopsychosocial and interdisciplinary rehabilitation [13, 14].

Rehabilitation outcome at the National Spinal Injuries Centre (NSIC) at Stoke Mandeville Hospital involves a clinician-administered Spinal Cord Independence Measure (SCIM) [15] and patient

self-report assessment, the Stoke Mandeville Spinal Needs Assessment Checklist (SMS-NAC) [16,17,18,19], to measure progress and develop a process map for rehabilitation [16, 18, 19]. The

former is a scale developed to assess functional independence following SCI, whilst the latter is a self-report measure that engages the patient in understanding their range of changed

functional health needs, with the individual rating their knowledge and skill in a variety of SCI self-management domains. The current research aims to explore both measures and outcome

across levels and completeness of SCI, to gain understanding of their clinical utility and establish a more comprehensive picture of rehabilitation progress. Moreover, given the two measures

are administered concurrently, understanding the relative benefits for each assessment may lead to greater tracking of inpatient progress, enabling rehabilitation amendments to account for

individual and demographic variation in outcome [20, 21].

The NSIC at Stoke Mandeville Hospital administers two distinct SCI-specific rehabilitation outcome measures in routine clinical practice to inform inpatient service-users of their starting

point, needs, progress and outcomes through rehabilitation.

The SCIM is an internationally recognised measure for SCI functional assessment, used within research and rehabilitation provision [1, 23]. The SCIM includes 19 items over four domains: (a)

self-care (6 items, scored 0–20); (b) respiration and sphincter management (4 items, scored 0–40); (c) mobility, room and toilet (3 items, scored 0–10); and (d) mobility, indoors and

outdoors (6 items, scored 0–30). A total SCIM score is also calculated, summing the subscale scores. The higher the score on an item, the less assistance, aids or medical compromise for the

task assessed to be accomplished with, meaning the higher the score, the greater the observed independence. All questions must be answered, with no N/A answers possible. Newly injured SCI

inpatients were scored on the observational SCIM on admission and discharge by a multidisciplinary (MDT) meeting involving medical and nursing staff, physiotherapist, occupational

therapists, clinical psychologists and case managers.

As part of the MDT goal planning framework, the evidence-based SMS-NAC was developed by Kennedy and Hamilton following user consultation and has been regularly updated according to clinical

practice [17]; the current paper reports on the 2015 version, using data from 2015 to 2020. It structures a person’s skill acquisition, knowledge and rehabilitation progress across ten

biopsychosocial domains: physical health (54 items), daily living activities (33 items), skin and posture management (21 items), bladder management (29 items), bowel management (16 items),

mobility (28 items), wheelchair and equipment (32 items), community preparation (36 items), psychological health (40 items, including the Hospital Anxiety and Depression Scale [24], the

short form of the Appraisals of DisAbility: Primary and Secondary Scale [25], the PMSnac [26]) and discharge coordination (39 items). Subtopics and items within each domain are organised

hierarchically, so that items come in the order that they would be addressed during rehabilitation. In mobility, for example, ‘transfers’ is followed by ‘wheelchair skills’, which is

followed by ‘ambulation’; within transfers, transfers to/from a bed comes before transfers to/from a car.

All items are scored from 0 to 3, with higher scores indicating full independence in or knowledge of that task. Independence on the SMS-NAC refers to both physical independence, in which the

individual requires no other assistance from another person to physically complete a task, or verbal independence, whereby the PwSCI requires the physical assistance of at least one other

person to complete a task, but has full knowledge and ability to instruct another person in that task. This means people with all levels and completeness of SCI are able to reach optimal

rehabilitation outcome, achieving 100% on this scale, and enables them to visually understand their improvements across time and rehabilitation [4]. The SMS-NAC assesses both physical and

verbal knowledge and skills concurrently, with each interchangeable in their contribution toward the final score, enabling the PwSCI to specify their skill level and knowledge item by item.

For example, someone with a C5/6 SCI may be physically independent in upper body dressing and instruct others to dress their lower body (demonstrating verbal independence). Not all questions

are appropriate to be answered by all patients. Some questions can therefore be answered with ‘N/A’, which is scored as fully independent. A percentage score is calculated for each domain,

taking the sum total scored by an individual as a percentage of the maximum possible score for that domain.

The measure’s reliability and validity has been examined and approved for use in this population, and on the basis of psychometric properties and clinical utility the SMS-NAC has

historically been recognised as one of the best international outcome measures [7, 27]. It is administered on admission to provide a framework for rehabilitation goal and target setting, and

repeated prior to discharge to demonstrate learning and progress for users and clinicians, and identify remaining goals. The ten domains map directly onto the Goal Planning Programme,

providing a measure that directly relates to person-centred goal setting [16, 18].

Participants included in the current study were 195 newly injured SCI inpatients participating in rehabilitation at a specialist SCIC between February 2015 and January 2020. Both the SCIM

and SMS-NAC are completed twice as part of standard clinical care, at admission (within 2 weeks of admission or mobilisation, whichever was soon) and at discharge (6–4 weeks prior to

discharge). They are administered routinely for all adult inpatients, except for adults with significant cognitive impairments. Only inpatients who completed both measures were included in

the current review. There were no other inclusion or exclusion criteria. A total of 721 patients were admitted for rehabilitation in this period, with 526 excluded in turn for having no NAC

data (n = 71), having only one NAC (n = 408), then finally for having only one SCIM (n = 44) or incomplete NAC data (n = 3).

After summary descriptives were produced for participant demographics (Table 1), a series of Mixed ANOVAs with Bonferroni post-hoc tests were used to answer the primary research question.

Mixed 2 × 3 ANOVAs (2 timepoints of admission and discharge × 3 injury groupings as described in Table 1) were performed to examine whether participants’ scores in the SCIM and SMS-NAC

changed significantly over time, and whether scores in either measure were affected by injury characteristics. The change in scores over time was important to consider as one mark of

responsiveness for rehabilitation outcome measures is their ability to detect change over time. Any differences in scores by injury characteristics would also elucidate the clinical utility

of the measures over the full population of PwSCI. One-way ANOVAs were also run for each SMS-NAC and SCIM domain (including SCIM Total) at admission and discharge separately, split by level

of injury, to clarify the main effect of group in the mixed ANOVA (which was based on the average group scores, taking the average of admission and discharge scores). This examined whether

group differences existed consistently at both admission and discharge, or whether there was a significant difference between groups at only a single point in time, distorting the average.

All ANOVAs were performed separately for all ten domains of the SMS-NAC, all four domains of the SCIM and total SCIM score. This enabled more detailed examination of both the ability of the

measures to assess individuals’ improvement across the full range of rehabilitation, and also how the two measures might complement each other in rehabilitation outcome measurement by

developing a more detailed picture of both measures. Significance was set at p