Abstract
Background
A tertiary spinal cord injury (SCI) center was established in the northern region of Hong Kong, China and a multidisciplinary SCI rehabilitation program was developed to reintegrate patients into the community.
Objective
To investigate functional outcomes for Chinese people with SCI across a 1-year period.
Design
Longitudinal prospective design.
Methods
Thirty community-dwelling participants with traumatic SCI were recruited. Functional status was measured using functional independence measure (FIM) on admission, upon discharge, 1-month, 3-month, 6-month, and 1-year post-discharge. Information on use of assistive devices and life role were also obtained.
Results
Twenty-three (76.67%) participants were men. Seventeen participants (10 with tetraplegia and 7 with paraplegia) were classified ASIA A, B, or C; 13 (7 with tetraplegia and 6 with paraplegia) were classified as ASIA D. Significant differences in FIM motor scores were only found between the tetraplegia group and three other diagnostic groups using Bonferroni post-hoc tests of repeated measure ANOVA (analysis of variance) (P < 0.05). Longitudinally, contrast tests of repeated measure ANOVA showed significant differences during the hospitalization period for all diagnostic groups. People in the ASIA D group showed significant functional improvement even after 1-year post-discharge (P < 0.05). At 1-year post-discharge, only two participants were engaged in either remunerative employment or academic pursuit.
Conclusion
Despite functional status improvement, few people with traumatic SCI were re-engaged in productive life role 1 year after discharge. Studies with longer follow-up would be beneficial.
Keywords: Spinal cord injuries, Rehabilitation, Employment, Activities of daily living, Quality of life, Community reintegration, International Standards for Neurological Classification of Spinal Cord Injury, Treatment outcomes, Assistive technology, Tetraplegia, Paraplegia, Hong Kong
Introduction
Traumatic spinal cord injury (SCI) often leads to physical, functional, and psychosocial challenges for individuals. A high incidence of SCI among younger populations has been reported,1,2 resulting in significant physical and financial burden for individuals and their caregivers.1,3–5 People with SCI often need intensive rehabilitation in hospitals and rehabilitation centers, depending on the provisions of healthcare systems, to maximize function in daily activities. They often rely on different categories of assistive technology and personal attendance on a long-term basis. Living environments require major modifications in order to provide barrier-free environments for people with SCI.6,7 They continue to adapt to the debilitating condition after they reintegrate into the community. The adaptation process usually continues after they are discharged from a rehabilitation institute. An increasing number of studies have been conducted to determine the long-term well being of people living with chronic SCI8–14 and those who care for them.15,16
Since people with different levels and completeness of traumatic SCI experience different patterns or profiles of recovery, both neurological and functional, the American Spinal Injury Association (ASIA) established the Standard for Neurological Classification of Spinal Injured Patients to provide a more consistent standard of classification among clinicians and researchers.17 It was revised in 1996 and 2000; the most recent revisions were published in 2009 and 2011.18,19 Several studies have been conducted to investigate the validity of the classification system.20–22 Paralyzed Veterans of America compiled consensus guidelines by the Consortium for Spinal Cord Medicine6 not only to serve as guidelines for clinical intervention, but also to provide references on rehabilitation outcomes, including functional status and quality of life.
A number of studies have been conducted to investigate the neurological and functional recovery among people with different levels and completeness of injury. Waters et al.23–26 focused on the motor and sensory recovery of individuals with different injury level and completeness of SCI. The series of studies substantiated that people with either complete or incomplete tetraplegia and paraplegia manifested different potential for motor and sensory recovery. Moreover, Ditunno et al.27 studied the functional status of traumatic SCI based on the Frankel classification, the diagnostic classification system preceding the ASIA/IMSOP (International Medical Society of Paraplegia) classification system. They determined that people admitted with Frankel grades C and D (equivalent to ASIA grades C and D) showed more functional improvement upon discharge from the rehabilitation institute than those classified as Frankel grade A or B (equivalent to ASIA grades A and B). Various studies have been conducted in different countries to investigate functional outcomes during the rehabilitation stage to have consistent results.28–33 The ASIA/IMSOP classification system was also adopted in these studies to measure rehabilitation outcomes.
Furthermore, possibly due to the length of time required for data collection, longitudinal studies to look at the functional changes appear to be limited. Although different research teams adopted different follow-up time frames, it was generally concluded that people with different levels and completeness of SCI showed neurological and functional improvements within 6 months to a year. In a 5-year long-term study, Hall et al.34 studied the characteristics of functional measures on different levels of severity for traumatic SCI. It was revealed that the functional gain, reflected by the functional independence measure (FIM), was greatest between admission and discharge. One year after injury the functional status showed less dramatic improvement. A more recent study adopting a shorter 6-month time frame was conducted on an Asian sample showing a similar functional recovery pattern.35 The authors also reported that participants classified as ASIA grade A or B also showed substantial functional improvement. Another study with a similar follow-up period also revealed that those with complete injury (not just those with incomplete injury) could proceed to a higher ASIA status.33 Other studies with a different length of follow-up period also revealed significant functional improvement 12-month post-discharge.36,37 Furthermore, a recent Hong Kong study by Chan and Chan7 attempted to examine the functional characteristics of people with SCI in a tertiary rehabilitation center. The study explored a short-term functional profile of the people with SCI from admission phase to 3-month post-discharge. People with different levels and completeness of SCI were shown to have different profiles of functional recovery, and the discharge FIM motor scores were found to be similar to the data reported by the Consortium for Spinal Cord Medicine.6 Participants with tetraplegia and paraplegia classified as ASIA grade D showed the greatest motor gain during the study period.
Owing to the long-term debilitating effects of SCI, people with the condition often require various types of assistive equipment in order to maximize daily functions. The Consortium for Spinal Cord Medicine6 has established a guideline for assistive equipment that might be required by individuals with different levels of SCI. Literature on the use of assistive equipment among persons with SCI is limited, but studies have investigated the relationship among assistive technology, quality of life, and community integration.38–40
Apart from functional status and assistive technology, researchers have also looked at other characteristics of individuals with SCI. A number of studies investigated the complications of SCI, including pressure ulcers,41 the effects of aging on the spinal cord,8,42–45 spasticity,45 and urinary tract infection.44,46 Other groups of researchers investigated the issue of community integration and adaptation.47–50 These studies showed that people with SCI usually experienced disturbances after a period of rehabilitation. They required extra effort to adapt to their new lifestyle. Following up on the study by Chan and Chan,7 the aim of the present study is to adopt a longer follow-up period of 1 year in order to investigate further the longitudinal demographic and functional profiles of people with traumatic SCI in a Chinese community.
Subjects and methods
Thirty people with traumatic SCI were recruited for this longitudinal study. All of them newly acquired SCI and had been admitted to the tertiary SCI rehabilitation center in Hong Kong in 2002. Neurological level of injury and completeness (i.e., grades A, B, C, and D) of the SCI were determined by the case medical officer according to the ASIA/IMSOP classification.6,22,51 In order to provide more interpretable results, the individuals were grouped according to their neurological manifestation. Since it was shown that people categorized as ASIA A, B, or C had similar recovery, they were grouped together for analysis. Based on the level of injury, people with ASIA A, B, or C status were divided into high-level or low-level tetraplegia and paraplegia. Moreover, since it was also shown that people with functional recovery under ASIA D had a similar pattern regardless of the level of injury,27 participants in the ASIA D groups were further collapsed into one diagnostic group. As a result, four diagnostic groups were formed for statistical analysis: tetraplegia ASIA A/B/C, paraplegia ASIA A/B/C, tetraplegia ASIA D, and paraplegia ASIA D. The case medical officer regularly monitored neurological changes throughout the rehabilitation period in the tertiary SCI center. The ASIA classification reported was the status upon discharge.
The motor function of each participant was evaluated by an occupational therapist, a physiotherapist, and a nurse 1 week after each participant was admitted using the FIM. The participants had been discharged from the center for 1 year after completing a course of intensive rehabilitation intervention. A longitudinal study design was adopted in which outcome measurements were collected on admission, upon discharge, 1-, 3-, 6-, and 12-month post-discharge. Two main categories of data collected in the present study were demographic characteristics and functional status of the participants.
Demographic data
Apart from the level and completeness of the SCI, other demographic data were also collected. This included gender, age, reason of injury, premorbid and 12-month post-discharge life roles, premorbid and discharge home placement, and length of stay at the rehabilitation center. The types of assistive equipment issued by occupational therapists were also noted.
Motor scores of FIM
The FIM52 is the most widely applied instrument to measure the functional status of people with SCI. It was also recommended as the key functional instrument by the Consortium for Spinal Cord Medicine.6 It consists of 13 motor items and 5 cognitive items. The evaluator rates each item based on a 7-point ordinal scale with “1” denoting “complete dependence” (performs less than 25% of task) and 7 denoting “complete independence” (performs 100% timely, safely). A wide range of studies have been conducted to investigate the psychometric properties of the FIM.53–60 Rasch analysis also confirmed the two-domain structure of the instrument.53,54,61 Its applicability on SCI population has been reported in the previous studies.34,62–64 The results concluded that the FIM is a reliable and valid instrument for SCI populations. In the present study, the cognitive scores were not included due to the substantial ceiling effect when applied to a sample of people with SCI.34 The same ceiling effect of the cognitive scores was also found in a study applied to Chinese population.7 The original FIM was rated by a trained clinician on a performance basis. More recently, a telephonic version of motor FIM has been established and a series of validity studies had been conducted. The Chang et al.65 study recruited 132 patients from a geriatric rehabilitation program. The scores from the telephonic version of the FIM were found to be similar to those from the original observation version based on Rasch statistics.65 Another validity study was conducted in a group of individuals with SCI. It was revealed that intraclass correlation was as high as 0.99. Other studies also revealed that self-rating scores were associated with those by trained clinicians.63,64,66,67 These findings were beneficial for the longitudinal design of the present study since the functional status of each participant could be followed up by telephone based on the participant's self-rating.
Statistical analysis
Participants’ demographic data were first analyzed using descriptive statistics. Owing to the limited sample size, the six diagnostic groups were collapsed into four groups: (1) tetraplegia ASIA A/B/C, (2) tetraplegia ASIA D, (3) paraplegia ASIA A/B/C, and (4) paraplegia ASIA D for further analysis. Repeated measure analysis of variance (ANOVA) was applied to investigate FIM motor score difference among three diagnostic groups across six measured points of study, i.e., admission, discharge, 1-, 3-, 6-, 12-month post-discharge. Missing data during the follow-up period were filled up by means of the directly preceding and succeeding FIM motor scores. A multiple comparison statistic, Bonferroni post-hoc test, was used subsequently to identify the functional differences across six measurement points between each diagnostic group. For within-group comparison, repeat contrast tests were applied to investigate FIM motor score changes between two successive data across six measurement points. Software SPSS 12.0® was used to conduct the data analysis described above. Despite small sample size with a four-group categorization, the parameter test of repeated measures was still applied instead of non-parameter tests due to the robustness of this statistical method. In order to reflect sufficient sample size, a power analysis was conducted, including observed power with the α value of 0.05 and partial η2. Conventionally, observed power reaching the level of 0.8 or more is considered to be satisfactory.
All applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during the course of this research.
Results
Table 1 summarizes demographic data for all four diagnostic groups. Among the 30 participants recruited for the present study, 10 were classified as tetraplegia ASIA A/B/C, whereas 7 were paraplegia ASIA A/B/C. Seven and six participants were classified under the tetraplegia and paraplegia ASIA D groups, respectively. Overall, 23 men (76.67%) were recruited in the present study, resulting in a male-to-female ratio of 3.3-to-1. The mean age ranged from 35.43 years (standard deviation = 12.47) for paraplegia ASIA A/B/C group to 56.40 years (18.28) for tetraplegia ASIA A/B/C group. As a whole, 11 (36.67%) of the participants had sustained SCI due to a traffic accident. In addition, eight (26.67%) and seven (23.33%) of them had sustained an SCI as a result of falling from a height and from slipping and falling, respectively.
Table 1.
Tetraplegia ASIA A/B/C | Paraplegia ASIA A/B/C | Tetraplegia ASIA D | Paraplegia ASIA D | |
---|---|---|---|---|
Male (%) | 7 (23.33) | 5 (16.67) | 7 (23.33) | 4 (13.33) |
Age (SD) | 56.40 (18.28) | 35.43 (12.47) | 51.29 (14.94) | 35.84 (19.92) |
Reason of injury (%) | ||||
Traffic accident | 4 (13.33) | 4 (13.33) | 1 (3.33) | 2 (6.67) |
Falling from height | 4 (13.33) | 2 (6.67) | 2 (6.67) | 0 |
Slipped and falling | 3 (10.00) | 2 (6.67) | 1 (3.33) | 1 (3.33) |
Falling object | 0 | 1 (3.33) | 0 | 0 |
Stab injury | 0 | 0 | 1 (3.33) | 0 |
Days from accident to center admission (SD) | 48.02 (23.67) | 31.55 (20.85) | 24.74 (16.97) | 21.45 (12.28) |
Length of stay (SD) | 155.20 (98.75) | 115.43 (44.41) | 100.34 (56.88) | 79.46 (50.44) |
SD: standard deviation.
The changes of placement among participants before and after the SCI are also summarized in Table 2. All participants lived in the community before the occurrence of SCI. Five of them were discharged to a private old-age home due to insufficient social support. Of the remaining 25 participants, 11 home assessments were conducted, and 3 new flats at public housing estates were allocated under the Hong Kong Housing Authority compassionate re-housing policy, followed by essential home modification. The mean and the standard deviation of length of stay for each diagnostic group are summarized in Table 1. The average appeared to be longest for the tetraplegia group (mean = 155.20 days and standard deviation = 98.75) and shortest for paraplegia ASIA D group (mean = 79.46 days and standard deviation = 50.44 days). However, one-way ANOVA showed no significant difference among four diagnostic groups (P > 0.05).
Table 2.
Life role (%) | Premorbid | At 12 months |
---|---|---|
Working | 17 (56.67) | 1 (3.33) |
Retired for age | 6 (20.00) | 6 (20.00) |
Retired for disability | 0 (0.00) | 14 (46.67) |
Homemaker | 3 (10.00) | 1 (3.33) |
Student | 2 (6.67) | 1 (3.33) |
Unemployed | 2 (6.67) | 7 (23.33) |
Premorbid accommodation (%) | ||
Public housing estate (PHE) | 16 (53.33) | |
Privately owned flat | 12 (40.00) | |
Rented flat | 3 (10.00) | |
Discharge accommodation (%) | ||
Returning to previous PHE | 10 (33.33) | |
Returning to previous private/rented flat | 11 (36.67) | |
Moved to rehousing PHE flat | 3 (10.00) | |
Transferring to old-aged home (%) | 5 (16.67) |
SD: standard deviation.
The mean motor scores across six measurement points are summarized in Table 3. In spite of limited sample size, repeated measure ANOVA showed that there were significant differences among three diagnostic groups (Mauchly's test of sphericity: P < 0.05; Greenhouse-Geisser test: F(1.558, 40.51) = 112.697; P < 0.01). Bonferroni post-hoc tests revealed significant differences in FIM motor scores only between tetraplegia A/B/C group and other three diagnostic groups (P < 0.05).
Table 3.
FIM motor (SD) |
F test* |
||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|
Admission | Discharge | Post-DC |
Adm. vs. DC | DC vs. 1 mo. | 1 vs. 3 mo. | 3 vs. 6 mo. | 6 vs 12 mo. | ||||
1 mo. | 3 mo. | 6 mo. | 12 mo. | ||||||||
Tetraplegia ASIA A/B/C (n = 10) | 20.60 (12.63) | 33.40 (21.11) | 34.55 (23.35) | 33.65 (21.34) | 32.45 (19.16) | 32.30 (19.24) | F(1,9) =15.56** | F(1,9) =2.25 | F(1,9) =0.51 | F(1,9) =0.99 | F(1,9) =0.01 |
Paraplegia ASIA A/B/C (n = 7) | 34.29 (17.71) | 74.29 (6.23) | 76.57 (8.24) | 76.14 (9.05) | 75.36 (9.44) | 75.43 (9.32) | F(1,6) =35.94** | F(1,6) =6.56*** | F(1,6) =0.21 | F(1,6) =0.81 | F(1,6) =1.00 |
Tetraplegia ASIA D (n = 7) | 39.71 (18.53) | 70.86 (11.55) | 74.00 (13.13) | 74.50 (13.03) | 73.86 (13.23) | 77.71 (14.48) | F(1,6) =27.00** | F(1,6) =3.81 | F(1,6) =3.00 | F(1,6) =0.133 | F(1,6) =11.29*** |
Paraplegia ASIA D (n = 6) | 40.33 (10.60) | 75.00 (13.13) | 82.33 (4.84) | 83.00 (4.43) | 83.00 (5.40) | 84.33 (6.12) | F(1,5) =13.52*** | F(1,5) =2.29 | F(1,5) =4.00 | F(1,5) =0.005 | F(1,5) =4.71*** |
Adm. = admission; DC = discharge; mo. = month(s); *repeated contrast test of repeated measurement ANOVA; **P < 0.01; ***P < 0.05.
Furthermore, contrast tests (repeated) of the repeated measure ANOVA were applied to explore the differences between two consecutive FIM motor scores across measurement time in each of the three diagnostic groups (Table 3). It was shown that, among participants in the tetraplegia A/B/C group, significant findings were obtained only between admission and discharge scores (F(1,9) = 15.56; P < 0.01). The scores were shown to reach a plateau after they were discharged from the SCI center. On the other hand, for the paraplegia A/B/C group, significant functional improvements were shown not only during the hospitalization period (F(1,6) = 35.94; P < 0.01), but also 1 month after they were discharged from the SCI center (F(1,6) = 6.56, P < 0.05). For both tetraplegia and paraplegia ASIA D group, the participants were shown to have improvements in FIM motor scores during the hospitalization period and between the 6th month and 12th month measurement points (P < 0.05) (Table 3).
Results of the power analysis were examined. The design achieved an observed power of 99.9% (partial η2 = 0.69) for between-subject effect when a Greenhouse-Geisser corrected F test was applied with α level set at 0.05. As for an across-time interaction effect, the observed power fell in a wide range. Observed power ranged between 10.1% (partial η2 = 0.018) (for contrast between the scores of 3- and 6-month post-discharge) and 82.9% (partial η2 = 0.343) (for contrast between the scores of admission and discharge) when a Greenhouse-Geisser corrected F test was used.
Upon discharge from the SCI center, each participant was provided with assistive technology intervention from his or her case occupational therapist.
Table 4 summarizes the type of assistive equipment prescribed to participants in different diagnostic groups. Each participant was prescribed with devices based on his or her functional status, social environment in the community, and social support. This was also true when a participant relied on public funding for equipment purchase. Seven main categories of assistive equipment were prescribed namely wheelchair, seating cushion, lifter, bathing/toileting equipment, hospital bed, and pressure relief mattress overlay. Owing to different dependence levels, people in different diagnostic groups needed different types of equipment. Among 10 participants in the tetraplegia group, 7 of them were prescribed manual wheelchairs and 2 participants were issued power-driven wheelchairs. One of the power wheelchairs was equipped with a tilt-in-space function. All but two were prescribed with a type of seat cushion with air or foam-gel medium. Only five participants were prescribed with a type of commode/shower chair along with a mobile hoist for transfer. In addition, four hospital beds and seven pressure-relief mattress overlays were also purchased among 10 participants under the tetraplegia group. The types of equipment were found to be more consistent across seven participants in the paraplegia group. All of them were provided with manual wheelchairs, seat cushions, and commode/shower chair (either dependent type or self-propelling type depending on the social support and home environment situation). As for both ASIA D group (n = 13), the types of assistive equipment needed by each participant appeared to vary among individuals. Only six of them were prescribed a manual wheelchair and five were issued a kind of pressure-relief seat cushion. Furthermore, three commode/shower chairs were issued for the ASIA grade D groups. No abandonment was reported among participants during the study period.
Table 4.
Type of assistive equipment |
||||||
---|---|---|---|---|---|---|
Manual wheelchair | Powered wheelchair | Commode/shower chair | Mobile hoist | Hospital bed | Mattress overlay | |
Tetraplegia ASIA A/B/C | 5* | 2* | 8 | 5 | 5 | 7 |
Paraplegia ASIA A/B/C | 7 | 0 | 7 | 6 | 0 | 0 |
Tetraplegia ASIA D | 5 | 0 | 3 | 3 | 0 | 0 |
Paraplegia ASIA D | 1 | 0 | 2 | 0 | 0 | 0 |
*One seating system was equipped with tilt-in-space function.
In terms of life role before injury, 17 (56.67%) participants were employed in a full-time remunerative job. Six (20.00%) of them were retired. Two (6.67%) of them were studying and three (10%) of them worked as homemaker. At 12-month post-discharge follow-up, almost half of the participants recruited (n = 14) had retired because of disability. Only three participants had resumed roles as worker, student, and homemaker at 12 months follow-up (Table 2).
At the time of post-discharge follow-up, different types of complications experienced by the participants were also revealed. Eleven (36.67%) participants experienced urinary tract infection or other forms of urological infection, whereas six of them had pressure sores that required a period of bed rest. Five of them underwent orthopedic surgery after they were discharged from the tertiary SCI center. Three of them reported experiencing neurological deterioration that negatively affected their daily function and safety. Apart from the physically-related medical complications, seven participants reported they had anxiety or depression during the previous year. Two had a spasticity condition that required constant medication intervention, passive stretching, and application of splintage to maintain joint integrity.
Discussion
This study is one of the few studies to explore the characteristics and the longitudinal functional changes in a Chinese population after 1 year. In terms of demographic characteristics, the male-to-female ratio was found to be one female to about four males, similar to what had been reported in other studies.1,31–33 The mean age of 46.22 years found in this study implied that a number of them had reached middle or old age which could adversely affect their potential in functional recovery.8,13 Similar to previous studies,7,32 the principle causes of traumatic SCI were road traffic accidents and falls from a height. While this is not the focus of the present study, this information suggests that improvements in road and occupational safety and community suicidal intervention services might prevent some cases of traumatic SCI.
The main merit of this study was the follow-up on the functional status of Chinese people with SCI in different diagnostic groups. Despite the sample size that limited us from creating a more detailed diagnostic group classification and make definite conclusions, the findings indicated that people with different injury severity and completeness had different functional recovery patterns. The current study reconfirmed that the most functional gain reflected by FIM motor scores was obtained between admission and discharge for participants in all diagnostic groups, including those in the tetraplegia A/B/C group. This finding was consistent with those from studies in Western34,41,68 and Asian countries.35 The functional status of people in the tetraplegia A/B/C group remained at a similar level after they had been discharged. As for those under the paraplegia A/B/C group, they continued to show significant improvement 1 month after discharge. Even with a much larger size in Hall et al.'s34 study and with a follow-up period up to 5 years, it was suggested that there were “only modest changes in motor scores” for participants with ASIA A/B/C. Furthermore, the functional profile was shown to be different for people under ASIA D groups. They could still have functional improvement even 1 year beyond the time of discharge. One noteworthy point was that both tetraplegia and paraplegia ASIA D groups and the paraplegia A/B/C group did not manifest differences in longitudinal functional profiles. This implied that the severity or completeness of SCI would be a more prominent parameter to determine long-term functional potential. To the researchers’ knowledge, there have been no previous studies to follow-up functional changes of people with paraplegia or tetraplegia ASIA D up to 1-year time or beyond. The preliminary results from this study should serve as a reference for future studies. Although community-based services and an outpatient referral system already exist in Hong Kong, further enhancement of these policies would be beneficial for people with SCI in order to maximize their functioning after discharge.
It is noteworthy that these functional improvements found in different diagnostic groups were not only attributed to the neurological recovery found previously,23–26 but also to the provision of assistive technology. In the practice guideline compiled by the Consortium for Spinal Medicine,6 a list of durable medical equipment and adaptive devices was recommended. Participants in the tetraplegia ASIA grade A group required more assistive equipment when they were reintegrated into the community. Apart from mobility equipment and seating systems, people required hospital beds and pressure relief mattresses for prevention of pressure ulcers and commode/shower chairs for bathing and toileting. On the other hand, the types of assistive equipment tended to vary among people in the two ASIA D groups since they tended to have better potential for recovery. Six out of 13 were in an ambulatory state and did not need any wheelchair for mobility. The previous studies revealed that the abandonment phenomenon of assistive equipment was rather common among people with disability.69,70 This means that people discontinue assistive equipment prescribed by therapists mainly due to lack of practice and mismatching of equipment with their needs during the prescription process. Yet, this phenomenon was not revealed at the time of a 1 year follow-up in this study. This could be because users and their assistive equipment were well matched, and users still found the equipment essential in their daily living. One might also note that the equipment prescribed was mainly home care equipment. Other high-end assistive technology, such as special computer access and an environmental control unit, were not issued to the participants recruited for this study, except power wheelchairs. The explanation was two-fold. This was partly due to the limitation of funding availability and funding policy. In Hong Kong, public funding often only covers so-called basic and essential assistive equipment; high-end equipment is often not considered. On the other hand, high-end technology is not as commonly accepted in Chinese populations. Chinese people tend to prefer human assistance to technical support, especially while performing self-care activities. This finding might give an insight to psychiatric or rehabilitative clinicians who deal with Chinese clients. Maximization of independence and respect for personal preference should be well balanced when prescribing high-end assistive equipment.
The length of stay for different diagnostic groups was somewhat comparable to what was reported in the previous study conducted on a similar SCI sample,7 especially in the paraplegia group. The current study showed that the length of stay was not significantly different among three diagnostic groups. Although this might be due to the small sample size, this also implied that the duration of hospitalization was purely related to neurological and functional factors. When one examines length-of-stay data from different countries, a wide variation is often revealed. This would be attributed to different medical systems in different countries. For example, in one of the earlier US studies by Ditunno et al.27 the length of stay ranged from 50.3 days for Frankel grade D to 93.4 days for the high tetraplegia group. In a study conducted in Australia,31 length of stay was reported to range from 43 to 206 days for incomplete paraplegia and complete tetraplegia groups, respectively. As discussed previously, in Hong Kong, the length of stay is often determined by the extended time required for arrangement of home equipment and accommodation (which included relocation of living placement and subsequent architectural modifications) since multiple parties are involved in these processes.7 Despite the fact that it has not been specifically recorded, some specific psychosocial factors would also be important to determine the length of stay in Hong Kong. This issue is highlighted by two case studies illustrated below.
Case 1
One participant, Mr Y, acquired high tetraplegia at C4 level with classification of ASIA A. He worked as a waiter in a Cantonese-style bistro before his injury in a traffic accident. Post-injury, he was totally dependent on activities of daily living (ADL) due to absence of upper and lower limb control despite 2-month intensive training. He required a mobile hoist for transfer and tilt-in-space-type commode/shower chair for bathing activity. Originally, he planned to use a power-driven wheelchair with chin control for mobility. Owing to his inability to safely maneuver a powered wheelchair system, he decided to use a manual wheelchair instead. Since he was not eligible to apply for social welfare (which is called the comprehensive social security allowance in Hong Kong), he had to purchase all the home equipment with his own savings. In terms of home environment, Mr Y was living with his girlfriend in a rented apartment, which was found to be accessible for all home equipment after a home assessment. No major modifications were needed. His partner acted as the main caregiver. As a result, without extra time for flat allocation and equipment prescription and sufficient social support, the total length of stay at the tertiary SCI center was only 77 days.
Case 2
The scenario was completely different for another patient, Mr L. Mr L also acquired a high-level tetraplegia at C4 level with central cord syndrome after falling from a height. After 6 months of intensive training, he could perform self-feeding with a universal cuffed spoon. He could also propel a lightweight wheelchair with capstan hand-rim projections for short distances. However, his social support was inadequate. He lived alone in a suburban village house before the injury. He was married but his wife and an infant son were citizens of a town in Mainland China. According to Hong Kong immigration policy, his wife and son could only visit him for short periods of time – no longer than 3 months. Besides, there was a flight of stairs at the entrance of his rented flat, which was not wheelchair accessible. An extended period was required for home equipment prescription via public funding. Since no modifications could be done at the flat entrance, Mr L needed neighbors to carry him along the staircase while he was sitting on a wheelchair. As an extended period would also be required for his wife and son to apply for right of abode in Hong Kong, Mr L needed to rely on his relatives or neighbors to take turns to provide assistance in daily activities when his wife went back to China for permit extension. In the end, Mr L stayed at the SCI center for 214 days.
These two cases illustrated that functional status alone does not determine the duration of hospitalization, i.e., the patient with better functional status required a longer stay because of social and environmental factors.
Continual collaboration of patients and their significant others and a multidisciplinary team approach are the keys for smooth community re-integration of people with SCI. Furthermore, the long-term effects of extended stay in a hospital institute have not been intensively addressed in the literature. Yet studies have found that community integration is positively related to subjective well being.71–76 Although further studies would be required to explore the issue, one might expect possible adverse effects from staying in a hospital environment for an extended period. Different ways could be sought to facilitate community integration. Transitional home placement might be one of the ways. Examples of transitional homes can be found in other countries.30,46,77 In addition, a more comprehensive community integration program could be established in which community trips would be encouraged so that individuals become familiar with the community facilities before actual discharge from the hospital.
Twenty five (83.33%) of the participants returned to the community; yet, only two (out of 30) participants engaged in either remunerative employment or academic pursuit at a 1 year follow-up. Among seven unemployed participants, two had attempted to resume a working role, but they failed to continue in the job for medical reasons. A previous study conducted with a Taiwan population reported a 47% employment rate.78 The low percentage of employment rate obtained in this study could be due to the fact that the follow-up period is merely 1 year after injury, and it was reported that it may take several years for people with SCI to engage in a first post-injury job.47 Also the small sample size limited us from making definite conclusions. Data from this preliminary study indicated that people with SCI may encounter tremendous “hurdles” after they are discharged into the community. Different aspects could be explored to stipulate factors for a low employment rate. There are two levels of factors contributing to the low employment phenomenon among people with SCI after rehabilitation: individual and societal factors. The first aspect was more on an individual basis, and related to one's physical and psychological factors resulting from SCI. Despite intensive rehabilitative training provided during the hospitalization phase, people with SCI and their caregivers still needed time to become accustomed to the new daily routine at home and in the community after discharge. Consistent with previous findings,46,48,79 the current study also found that a number of participants experienced different types of complications. These might lead to readmission to hospital for medical intervention. Furthermore, as discussed previously, participants’ mean age fell within the mid-age range, and it could be expected that a number of them would experience the effect of aging.8,13,44,80 A number of participants also experienced emotional problems after discharge from the rehabilitation center. Thus, people with SCI need to deal with these personal issues before employment or academic engagement. The second aspect that might affect the outcome of employment and educational activities appeared to be more “macroscopic”, concerning the societal level of the problem. This includes societal access and social policy. As barrier-free access and universal design was only introduced in Hong Kong in the 1990s, the implementation of these concepts in public facilities is still in progress. Public transport facilities are not yet comprehensibly accessible to wheelchair and transport services (locally called RehabBus Service and EasyBus) are not readily available.81 In terms of governmental policies, the Disability Discrimination Ordinance was promulgated in Hong Kong only in the 1990s.82 One would expect that societal attitude toward people with disability should become more positive. The selective placement division of the Labor Department also provides employment assistance and recruitment service for job seekers with disability. Yet, the unemployment rate increased to the level of 6.5% in Hong Kong during the study period.78 This was considered to be relatively high in the region as the unemployment rate had seldom exceeded 5%. Thus, this would be a hindrance for people who are physically challenged to re-enter the mainstream job market. This is a possible explanation for the low employment rate among people with SCI after rehabilitation. Another reason for some people with SCI not being engaged in any remunerative employment was that they were still going through worker's compensation procedures and were waiting for monetary compensation. This would further confound the employment situation. Future studies with a longer follow-up period would be beneficial to obtain a fuller picture of the employment situation among people with SCI.
Conclusion and implications
The current study highlighted the functional recovery pattern of people with different levels and severity of SCI after they had been discharged from a rehabilitation center for 1 year. On one hand, significant functional improvement was revealed for all SCI diagnostic groups during the hospitalization period; on the other hand, people in two ASIA D groups showed further improvement even 1-year post-discharge. On the other hand, the findings related to community integration were found to be specific to the context of Hong Kong. Few were engaged in more productive life roles at 1-year time post-discharge. This reflected that, after they were reintegrated into the community, people with SCI still needed to adapt to a new daily routine with their new physical conditions. Besides, they also needed to face physical complications and psychological distress. In order to facilitate their integration into the community in a smoother manner and to adopt a more productive life role, clinicians could serve as resource personnel whenever they encountered difficulties in their daily routine. Besides, various community services and self-help groups for people living with SCI could be introduced so that referral could be made whenever it is applicable. At the societal level, occupational therapists could play a role in liaising with the government to further promote a barrier-free concept in society. In terms of employment, supported or transitional work placements could be established with support from the Labor Department and potential employers. This would enhance the employment rate of people with SCI after rehabilitation. Finally, one of the weaknesses of this preliminary study would be the sample size. Yet, in order to explore the longitudinal changes of functional status among Chinese people with SCI, a repeated measure ANOVA was still attempted. The aim was to look at the emerging phenomenon instead of drawing definite conclusions. Encouragingly, most power analysis results still showed a satisfactory level, suggesting that the results can be considered reliable. Hopefully, results from this study will serve as a foundation for future studies with larger sample sizes and longer follow-up periods. It would be also worthwhile to conduct studies to incorporate other parameters such as community integration and quality of life as suggested by the Consortium for Spinal Medicine.6
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