Traumatic spinal cord injuries: A retrospective cohort study of children seen in Western Australia between 1996 and 2016

Abstract

PURPOSE:

To describe the medical complexity of traumatic spinal cord injury (TSCI) in paediatric patients in Western Australia (WA). Secondly, to determine if Princess Margaret Hospital (PMH) for Children (the tertiary paediatric centre in WA where all TSCI patients are managed) is meeting the requirements of the Australasian Rehabilitation Outcomes Centre (AROC) paediatric rehabilitation minimum data set gathered on each patient.

METHODS:

Retrospective cohort study of patients seen at PMH between 1996–2016. The AROC minimum dataset information data were gathered on each patient. Functional status and rehabilitation outcomes were assessed using Functional Independence Measure for Children (weeFIM), Canadian Occupational Performance Measure (COPM), and Goal Attainment Scaling (GAS). Patient complexity was captured by documenting the specialty teams involved, the number of readmissions, and the International Statistical Classification of Disease and Related Health Problems Z codes.

RESULTS:

Data from 19 patients (13 males, age range 6 months-15 years; 6 females, age range 4 years-13 years) were available. There were 10 cervical TSCIs with a median length of stay of 213 days and 9 thoracic TSCIs with a median length of stay of 49 days. Patients had between zero and six comorbidities prior to their TSCI.

CONCLUSIONS:

Children with medical complexity are responsive to rehabilitation but have a high burden of care, requiring multiple-specialty care and hospital re-admissions. AROC has set a minimum data set recommendation for the collection and examination of patient data. PMH meets the AROC guidelines for patient data collection and descriptive analyses.

Keywords

Spine traumatic paediatric rehabilitation outcomes documentation weeFIM COPM GAS data set PMH Australia

1. Introduction

Traumatic Spinal Cord Injury (TSCI) is an acute, traumatic lesion of neural elements in the spinal canal resulting in temporary or permanent sensory deficit, motor deficit, and bladder and/or bowel dysfunction [1]. Although rare in the paediatric population, the literature clearly acknowledges the complexity of TSCI in children [2, 3]. This is evident through the emergence of the term “children with medical complexity” (CMC), applied to patients with severe chronic multisystem conditions, functional limitations, and family needs [3]. TSCI typically requires substantial acute care, rehabilitation, and significant ongoing resources in order to integrate back into home, school and the overall community [4].

Table 1
Variables of Interest as framed within the ICF

Impairment/	Activity/participation	Environment	Core elements
functional status
Demographics	Goal Attainment Scaling (GAS)	ICD-10 Z codes	1. Participant and family history
WeeFIM	Canadian Occupational Performance Measure (COPM)		2. History of injury and pre-hospital care
Level & ASIA			3. Hospital management
grade of injury			4. Clinical assessment and examinations
			5. Treatments and interventions
			6. Therapies
			7. Community living

Currently there is no recognised gold standard for the rehabilitation of paediatric TSCI patients. While the International Classification of Functioning, Disability and Health (ICF) of the World Health Organisation guides rehabilitative services and provides a ‘common language’ from which to describe and guide a continuum of care across an individual’s life and health condition, currently there are no ICF categories specific for children and youth (ICF-CY) with spinal cord injury [2, 5].

In the absence of gold standards, the value of patient databases and registries in contributing to evidence-based standards of patient care is recognised [3, 6]. The Australasian Rehabilitation Outcomes Centre (AROC), in collaboration with the Australasian Faculty of Rehabilitation Medicine (AFRM), has developed a paediatric rehabilitation minimum data set. The data set comprises measures across the ICF, including demographics, burden of care measured using the Functional Independence Scale for Children (WeeFIM) and clinical outcomes, utilising the Canadian Occupational Performance Measure (COPM) and Goal Attainment Scaling (GAS) [7, 8]. The utilisation of these measures to document burden of care and clinical outcomes in neurological rehabilitation is well established [9, 10, 11, 12]. The purpose of this retrospective cohort study is to describe the medical complexity of patients with TSCI in Western Australia (WA) within the ICF framework. This was achieved by describing the demographics [13], level of impairment and functional status, rehabilitation outcomes, and rehabilitation service demands of the population. The secondary purpose was to determine if Princess Margaret Hospital for Children (PMH) is meeting the AROC paediatric rehabilitation minimum data set.

2. Materials and methods

A retrospective cohort study of patients with TSCI (inpatient or ambulatory patient) seen at PMH between January 1996 and September 2016 was undertaken. All paediatric TSCI patients in WA are managed at PMH. Governance, ethics, knowledge, outcome and publication approval (GEKO 12904) was obtained from PMH, WA.

2.1 Setting

PMH is the statewide paediatric tertiary hospital in WA, providing treatment to children aged up to 16 years of age at the time of injury. Prior to 2011 the spinal rehabilitation and allied health team managed the TSCI patients without the capacity to provide intensive blocks of therapy. However, in 2011, an intensive ambulatory rehabilitation outpatient service (iRehab) was established to help children with medical complexity and their rehabilitation needs. The iRehab service provides individual assessment, intensive treatment and allied health therapy, regular reviews, discharge planning, and community integration. Consistent with the ICF framework, multidisciplinary team members work in partnership with the family and the patient to maximise an individual’s wellbeing and functional outcomes, with attention given to the domains of body structure and function (impairment), activity (limitation) and participation (restriction) [14, 15], as influenced by environmental and personal factors. This retrospective cohort study does not include therapy provided by the community or allied health spinal team.

2.2 Patient identification

TSCI was defined as an acute deterioration in spinal cord function as a result of a single injury or surgical insult. Patients with pre-existing scoliosis or a congenital spinal anomaly who sustained a TSCI were included.

Variables of interest are guided by the seven core elements of the ICF (see Table 1) [16] and the AROC minimum data set [7].

2.3 Impairment

Impairment was reported using multiple demo- graphic references [13] including the WeeFIM and the American Spinal Injury Association Impairment Scale (ASIA). Currently, the WeeFIM is a commonly used

Table 2
Demographic information of traumatic spinal cord injury patients in Western Australia since 1996

	Patient	Age at	Time	Gender	LOS	Level &	Ventilator	Mechanism	Pre-existing medical conditions	# of Z	Family status
		injury	since			ASIA grade	dependent			codes
		injury	injury			of injury
0–5 yrs old	1	0.6	2 yr 1 m	M	486	C1, ASIA-A	Yes	Complication	Skeletal dysplasia, Developmental delay	2	No CPFS/CPU
								of skeletal
								dysplasia
	2	1.6	2 yr 3 m	M	111	T1, ASIA-A	No	MVA	0	0	No CPFS/CPU
	3	1.7	17 yr	M	47	C5, ASIA-D	No	MVA	Pneumothorax	0	No CPFS/CPU
	4	2.6	19 yr 3 m	M	366	C1, ASIA-A	Yes	MVA	Eczema	8	CPFS involved
	5	3.3	20 yr 9 m	M	137	C6, ASIA-A	Yes	MVA	0	4	No CPFS/CPU
	6	3.8	17 yr	M	55	C4, ASIA-D	No	MVA	0	1	No CPFS/CPU
	7	4.7	2 yr 4 m	M	213	C4, ASIA-A	No	MVA	0	2	CPU involved
	8	4.11	8 yr 2 m	F	598	C1, ASIA-A	Yes	MVA	0	7	CPFS Guardianship
6–12 yrs old	9	6.1	1 yr 8 m	M	172	T5, ASIA-D	No	MVA	Constipation	16	CPFS Guardianship
	10	7.7	5 yr	M	72	T5, ASIA-A	No	Fall	0	1	No CPFS/CPU
	11	9	13 yr 8 m	M	282	C1-ASIA-A	Yes	MVA	Type 1 diabetes	2	No CPFS/CPU
	12	10.5	8 yr 1 m	F	36	T8, ASIA-A	No	Medical/surgical	Short stature, Cloacal extrophy, Kyphoscoliosis	1	No CPFS/CPU
	13	10.6	12 yr 1 m	F	46	T12, ASIA-A	No	MVA	Dermoid cyst	0	No CPFS/CPU
	14	12	10 yr	F	–	C8, ASIA-A	No	MVA	0	0	No CPFS/CPU
	15	12.4	7 yr 9 m	M	49	T6, ASIA-A	No	MVA	0	0	No CPFS/CPU
13–15 yrs old	16	13.1	13 yr 3 m	F	18	T8, ASIA-D	No	Violence	0	7	CPU involved
	17	13.6	8 m	F	103	T8, ASIA-A	No	Fall	0	12	CPU involved
	18	14.8	3 yr 5 m	M	49	L2, ASIA-D	No	Medical/surgical	Kyphoscoliosis, Prader-Willi, $\downarrow$ Growth hormone	0	No CPFS/CPU
	19	15	3 m	M	96	T5, ASIA-D	No	MVA	0	0	No CPFS/CPU

Note: LOS: Length of stay in days, Yrs: Years, m: Months, M: Male, F: Female, T1-T8: Thoracic vertebrae 1-8, C1-8: Cervical vertebrae 1-8, L2: Lumbar vertebrae 2, MVA: Motor vehicle accident, CPFS: Department of child protection and family support, CPU: Child protection unit.

tool for measuring severity of disability and rehabilitation outcomes in children [7, 17, 18, 19]. It is an 18 item instrument measuring global functions of activities of daily living including self-care, sphincter control, transfers, locomotion, communication and social cognition [20]. Neurological severity of a spinal cord injury (SCI) is commonly classified according to the level and ASIA grade of injury [21]. It can be used to detect motor and sensory status and change over time with rehabilitation (more reliable in children $>$ 7 years) [22].

2.4 Activity participation

Activity and participation were measured using the GAS [23] and the COPM [24] which both have strong reliability and validity [7, 10, 11, 20] and are established within the paediatric TSCI population [12].

2.5 Environment

While the literature acknowledges the psychological components and importance of family supports to long-term paediatric rehabilitation outcomes, there is no recognised tool for specifically measuring social complexities [25]. Therefore, the well-recognised 10 ${}^{\text{th}}$ revision of the International Statistical Classification of Disease and Related Health Problems (ICD-10) Z codes was utilised to document the patients’ psychosocial complexity [25].

3. Analysis

Given the small population size, data analysis was undertaken using descriptive methods only.

4. Results

4.1 Demographics

Demographic data, including age, gender, level and ASIA grade of injury and mechanism of injury, time since injury, length of stay, and pre-existing medical conditions are presented in Table 2. Patients ranged in age from 6 months to 15 years with a median of 7.7 years. The length of patients’ initial admission ranged from 18 to 598 days, with a median of 103 days. Length of stay (LOS) for patients with cervical spine injury (median of 213 days) was greater than those with thoracic injury (median of 49 days).

Records indicate patients had between zero and six medical conditions diagnosed prior to their TSCI (denoted ‘pre-existing medical conditions’ on Table 2). Of those with pre-existing medical conditions, two patients sustained their TSCI as a result of spinal surgery complications (documented as Medical/Surgical in Table 2) and one had a TSCI as a result of skeletal dysplasia. Time since TSCI ranged from three months to 20.9 years (median of 6.7 years).

4.2 Functional status and rehabilitation outcomes

WeeFIM admission, discharge, and follow-up scores were used to report level of impairment. Documentation of functional status (WeeFIM) commenced with the establishment of the iRehab service in 2011. Prior to this, only 12% of patients had a WeeFIM assessment. Baseline and change scores on the COPM and GAS (Table 3) were used to report rehabilitation outcomes for the eight patients that attended iRehab.

Table 3
Goal Attainment Scale (GAS) and Canadian Occupational Performance Measure (COPM) scores for iRehab patients

Patient	Admissions	GAS T score	COPM
			Performance			Satisfaction
			Pre	Post	Change	Pre	Post	Change
13	1	72.8	ND	ND	ND	ND	ND	ND
	2	ND	ND	ND	ND	ND	ND	ND
8	1	53.8	1	5.5	4.5	0.5	3.5	3
12	1	45.4	1.5	4.5	3	3.5	7.5	4
	2	50.0	4.5	5.5	1	3	7	4
10	1	53.6	4.5	ND	ND	4.25	ND	ND
	2	62.1	5.8	7	1.2	6.2	7.8	0.67
	3	36.3	6.66	7.66	1	7.33	8	0.67
9	1	68.3	4.67	6	1.33	1	7	6
	2	45.4	ND	ND	ND	ND	ND	ND
	3	54.6	ND	ND	ND	ND	ND	ND
	4	50.0	ND	ND	ND	ND	ND	ND
2	1	58.5	ND	ND	ND	ND	ND	ND
7	1	50.0	ND	ND	ND	ND	ND	ND
19	1	50.0	3	5	2	2	5	3

Note: ND $=$ No data.

Table 4

Paediatric rehabilitation and medical burden of care

Patient	Years		Level &	Outpatient	Readmissions	Planned	Unplanned	iRehab
	followed		ASIA grade	teams		procedures	procedures	admissions
	up		of injury	involved
1	1	.5	C1, ASIA-A	4	6	2	4	0
2	1	.2	T1, ASIA-A	8	9	3	6	2
3	16	.7	C5, ASIA-D	3	8	8	0	0
4	15	.8	C1, ASIA-A	11	6	3	3	0
5	15	.3	C6, ASIA-A	9	24	23	1	0
6	16	.7	C4, ASIA-D	3	16	15	1	0
7	1	.8	C4, ASIA-A	7	8	5	3	1
8	8	.2	C1, ASIA-A	12	34	12	22	1
9	1	.3	T5, ASIA-D	5	9	4	5	4
10	4	.8	T5, ASIA-A	3	6	5	1	3
11	9		C1-ASIA-A	13	10	2	8	0
12	7	.9	T8, ASIA-A	6	10	9	1	2
13	8	.5	T12, ASIA-A	6	35	12	2	21
14	11		C8, ASIA-A	0	15	12	3	1
15	5	.2	T6, ASIA-A	4	0	0	0	0
16	4	.1	T8, ASIA-D	1	1	0	1	0
17	0	.5	T8, ASIA-A	4	3	1	2	0
18	3	.3	L2, ASIA-D	2	0	0	0	0
19	0	.04	T5, ASIA-D	1	0	0	0	1

Eight TSCI patients who were medically stable have attended the iRehab program. Of those that did not attend, four had transitioned to adult services prior to 2011. The iRehab LOS ranged from 3 days to 45 weeks and was dependent on the severity of injury. A longer LOS did not always result in a greater improvement of rehabilitation outcomes.

4.2.1 WeeFIM

Complete data sets are available for five patients. Two (patient 1, 6 months old and patient 2, 18 months old) presented with complete C1/C2 spinal injury and did not record changes to their burden of care measures. Four patients (7, 9, 17, 19) recorded WeeFIM motor improvements between 6 and 21 points. These patients were aged between 4.7 years and 15 years at the time of injury. Two sustained incomplete lesions ASIA-D and two ASIA-A complete lesions with three of these children having thoracic spine injuries.

4.2.2 Activity and participation

COPM and GAS data for the eight patients who attended iRehab are presented in Table 3. Those that did not attend iRehab received therapy and medical care from the multidisciplinary spinal team. Three patients had incomplete data sets: patient 13 was the first to attend the iRehab service and preceded the implementation of the COPM and GAS; patient 2 was deemed inappropriate for COPM and GAS due to cultural and psychosocial issues; and patient 8 was under the guardianship of Child Protection and Family Services (CPFS) in a care facility, precluding administration of these assessments.

Clinically meaningful change was recorded for all eight patients who attended i-Rehab. Of the 14 documented GAS scores, all but one achieved a T score greater than 45, suggesting they met or exceeded the expected level of goal attainment [16]. Further, the iRehab service met the benchmark requirements for the achievement of the goals set using GAS (https:// issuu.com/hollandbloorview/docs/holland_bloorview_ annual_report_fin).

4.2.3 Environment

Table 2 also shows the involvement of CPFS and the number of ICD-10 Z codes identified for each patient, as collected on hospital admission. Six of nineteen patients had CPFS or Child Protection Unit (CPU) involvement during their initial admission. Twelve of the 19 patients recorded Z codes. Of the six patients requiring CPFS or CPU involvement, two were known to CPFS before their injury, three received hospital based CPU team involvement, and two were placed under CPFS guardianship. The number of Z codes recorded for these patients ranged between 2 and 16, with a median of 7.5.

4.3 Rehabilitation service demands

Table 4 illustrates the complexity of care required by each patient, as measured by the number of outpatient team units that provided specialised rehabilitative care, number of (re)admissions, and planned or unplanned procedures. The data show that the number of teams providing care ranged between 0 and 13, and total number of readmissions ranged from 0–35. Sixty nine percent of these admissions were planned, including limb or bladder botulinum toxin injections (41%) and urological procedures (18%). Thirty one percent were admissions through the Emergency Department including 51% for respiratory concerns (infection, tracheostomy or ventilator related), urinary tract infections (16%), and pressure sores (7%).

5. Discussion

5.1 Demographics

The data described in this report indicate that patients seen in WA reflect those described in the literature. Specifically, the demographics show a predominance of males to females [4, 26, 27, 28]; younger age of injury ( $<$ 5 years), predominance of cervical spine injury [29, 30, 31], multiple acute complications [32], a predominance of motor vehicle accidents (MVA), and lengthier LOS for cervical spine injuries [32] in the younger population [29].

According to reports in the USA, Italy, and Australia, LOS is longer for patients with tetraplegia than those with paraplegia [29, 31], and longer for those with a complete injury [29, 30, 31]. The data from our patients show that the younger patients with severe functional impairments at the time of admission had a longer LOS [31]. Furthermore, patients with cervical spine injuries frequently had more acute complications (respiratory, urinary, pressure sores), higher care needs, and a slower hospital discharge due to significant home modification requirements and nursing care [32].

Interestingly, 7 of the 8 patients $<$ 5 years old sustained their TSCI from a motor vehicle accident (MVA). Of these, all but one suffered a cervical spine injury. This aligns with the literature and has been attributed to young children having disproportionately large heads, weak neck muscles, horizontal orientation of the upper cervical facet joints, and ligamentous laxity, which contribute to an increased risk of cervical cord injury during an MVA [29, 30, 31]. Three of the 19 patients were at higher risk of SCI due to skeletal dysplasia or spinal surgery required for severe kyphoscoliosis [33].

5.2 Functional status

The overarching aim of clinical care is to improve functional outcomes for children with SCI. While the WeeFIM is widely used and reported in paediatric rehabilitation [12, 34, 35], there is limited reporting of the WeeFIM to measure functional change in paediatric TSCI. The WeeFIM scores from this cohort demonstrate increased impairment for those paediatric patients $<$ 7 years old and those with a more severe level and ASIA scale. In their audit of paediatric physical disability after injury-related rehabilitation, Zonfrillo et al. [34] report that their cohort of children with SCI made minimal to no recovery of physical functionality and had more pre-existing medical conditions and longer LOS than those without SCI. Garcia et al. [12] reported patients with SCI level from C6 to T1 have slightly greater functional gain on the WeeFIM than those patients with other levels of injury. They further report paediatric patients with TSCI secondary to motor vehicle crashes need relatively longer LOS for the same amount of functional gain, due to extraspinal injuries and complications. Our data is consistent with these findings. Of the six patients with admission and discharge records, 2 patients recorded a motor WeeFIM change greater than 13, while the 2 patients with complete SCI recorded minimal to no change. This retrospective cohort study suggests patients with TSCI will continue to require a high level of care as shown by the multiple medical and iRehab re-admissions. This highlights the importance of longitudinal data to track the course of post injury recovery.

Reporting of functional status and response to intervention is fundamental to rehabilitation programs. While the WeeFIM is the most widely used tool, the questions of sensitivity to change and possibility of ceiling effects has been raised [31]. Consequently, a new tool specific to paediatric SCI (Spinal Cord Independence Measure-III Self Report-Youth [6]) is in development. This tool has been designed to evaluate self-care, respiration, bladder and bowel management, and mobility [6], and may well become a preferred measure for TSCI patients [6].

Tables 2 and 3 outline both the demographic and functional status data for the paediatric TSCI patients. This information fulfils the AROC minimum data set recommendation for the collection and examination of patient data.

5.3 Rehabilitation outcomes

Paediatric rehabilitation requires individualised goal setting in collaboration with the patient and family [36]. The success of both the COPM and GAS as outcome measures is well documented, as they focus both the parent’s and child’s attention on self-selected activities and promote active engagement in the therapy process [37]. This cohort study shows utilisation of these tools is central to the iRehab service. Implementation of these measures has enabled the service to track patient rehabilitation progress, as well as rate the effectiveness and efficiency of their treatment programs [10, 11, 20].

The impact of SCI on family functioning is clearly acknowledged [38, 39] and as such is part of the documentation and evaluation process within iRehab. This cohort study highlights the contextual factors of psychosocial complexity in this population (ICD-10 Z Codes). Patients with multiple Z codes were ‘at risk’ of harm which exacerbated the complexity of their hospital stay(s), discharge planning, and ability to commit to iRehab [40, 41].

While the results of this cohort study show improvement in WeeFIM, COPM, GAS, and ICD-10 Z code documentation, further improvement would indirectly facilitate a better ability to monitor patient outcomes [42].

5.4 Rehabilitation service demands

Currently, the justification of a specialised multidisciplinary team is to optimise rehabilitation, injury management, and complication prevention [17, 43]. Due to the impact of both physical and cognitive growth and development, paediatric patients with TSCI require a different approach to intensive multidisciplinary therapy, education, and ongoing monitoring [44] as they have capacity for continued functional gains. The data from this study demonstrate the complex needs and extensive involvement of many different specialties to manage both acute and chronic issues resulting from TSCI [14].

The iRehab program is important in contributing to improved patient treatment outcomes, which has been demonstrated by the results of observations and descriptive analyses of this study. Utilisation of these iRehab program measures enabled the PMH service to track patient rehabilitation progress, as well as rate the effectiveness of their treatment program. In addition, treatment time and hospital operating costs can potentially be reduced. Since the commencement of this service, patients with TSCI have had access to an intensive multidisciplinary ambulatory rehabilitation service. This service is framed within evidence based rehabilitation principles and involves individual assessment, treatment, allied health therapy, discharge planning, and community integration [7]. Although this cohort study has a limited data set, the data shows a continual positive functional change with each iRehab admission.

5.5 Limitations

Limited conclusions can be drawn from this retrospective cohort study due to the small sample size. Level and ASIA grade of injury and WeeFIM reporting was inconsistent, likely due to the nature of paper medical records, multiple volumes of patient notes, and occasional difficulty accessing notes. Creating a standardised reporting protocol that contains all relevant TSCI patient records, including historical treatments, assessments, and progress reports (including level and ASIA grade of injury and WeeFIM) will allow for longitudinal observation of functional outcomes and contribute to building a body of knowledge that will facilitate future clinical care and research.

6. Conclusion

Case records of TSCI patients seen at PMH between 1996–2016 were collated and descriptively analysed. The data show that children with medical complexity while responsive to ambulatory rehabilitation have a high burden of care, require multiple specialty care, and hospital (re)admissions. AROC has set minimum data set recommendations for the collection and examination of patient data. PMH meets these AROC guidelines for patient data collection and descriptive analyses.

Footnotes

Conflict of interest

None to report.

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