QUALITY OF LIFE IN INDIVIDUALS WITH SPINAL CORD INJURY TREATED IN TERTIARY CARE CENTERS IN NEPAL

Trauma�c spinal cord injury (SCI) cons�tutes a signiﬁcant challenge to the quality of life (QoL). People with SCI perceive the overall QoL at a lower level


INTRODUCTION
The term "quality of life" (QoL), also known as "well-being," is a general term that refers to how the concerned person 1 judges the "goodness" of different aspects of life. This perceived condi on is measured through various instruments, which take into account a person's disposi on, sense of life fulfillment and sa sfac on, emo onal responses to life's events, and sa sfac on with one's job and interpersonal 2 rela onships. A person who has suffered a trauma c spinal cord injury (SCI) must endure terrible and irreversible health 3 changes. It has been established that SCI cons tutes a significant challenge to the quality of life, and people with SCI perceive the health-related and overall quality of life at a 4 lower level in comparison to normal individuals.
There are studies that have evaluated different factors influencing the social well-being of individuals with SCI. Four major biopsychosocial factors, namely in macy, safety, acceptance, and helplessness are found to associate 4 significantly with norma ve subjec ve well-being. Other variables like engagement in leisure ac vi es, posi ve feeling, and physical ac vity are reported to have a significant posi ve impact on subjec ve well-being; whereas the variables like lower household income, overweight, depression, violent e ology, and injury [6][7][8][9][10][11][12] severity, and being female are understood by SCI pa ents as the cause of more life problems and less life sa sfac on. These studies not only point to the greater significance of certain factors of QoL, but also ques on the significance of the factors iden fied in the earlier studies.
The number of studies assessing psychological aspects of Nepali pa ents with SCI exist in a small number. Among these studies, some have evaluated resilience, others have assessed post-trauma c stress disorder, yet others have [13][14][15] studied pain experience/ pain management.
In these studies, however, the issue of social well-being has been overlooked. There is only a single study that has evaluated 16 the QoL among individuals with SCI in Nepal. Therefore, this study aims to access the QoL in four domains namely, physical, psychological, social, and environmental health using the WHOQOL-BREF ques onnaire and iden fy the factors affec ng the QoL among the individuals with SCI presen ng to a ter ary care hospital and rehabilita on center of Nepal.

METHODOLOGY
This prospec ve cross-sec onal study was done in Dhulikhel Hospital, Kathmandu University Hospital (DH, KUH), and Spinal Injury Rehabilita on Center (SIRC), Sanga, Nepal. DH, KUH is a ter ary care center and a referral center for pa ents with spinal injuries. SIRC is a non-profit, inpa ent rehabilita on center for individuals with spinal injuries. It also provides peer counseling and psychology services as a part of standard care and is the major referral center for spinal rehabilita on in Nepal. All the individuals above 18 years of age with SCI [ASIA injury severity (AIS) A to D] of at least 3 months from trauma who were admi ed in DH, KUH or SIRC from June 2019 to May 2021 were included in the study. However, individuals not consen ng to the study, individuals with memory loss and cogni ve dysfunc on, and non-trauma c SCI were excluded. Ethical clearance was obtained from Ins tu onal Review Commi ee (IRC) of Kathmandu University School of Medical Sciences (KUSMS) [IRC-KUSMS approval number: 270/2021]. We u lized the semi-structured ques onnaires using standard WHO quality of life ques onnaires (WHOQOL-BREF) which is a measure, comprising 28 items within four quality of life domains: physical health, psychological well-being, social rela onships, and 17 environment. The WHOQOL-BREF has good internal consistency, as well as validity and the measure is argued to be appropriate generic health related quality of life [18][19][20] measure.
To use the WHOQOL-BREF in the Nepalese context, both forward and backward transla on was done. Pre-tes ng of the WHOQOL-BREF tools was done in the data collected from 10 individuals. Cronbach's alpha coefficient was computed (α=0.8, N=27) to determine the reliability of the instruments. Most individuals filled out the ques onnaire by themselves, while those needing assistance were interviewed using face to face interview method either by trained physiotherapists or by the trea ng doctor. A dichotomous variable was created (QoL good/ sa sfactory, or poor/ unsa sfactory) using the transformed total QoL score (TTQS) of 0-100 (a score of >60 categorized as good/ sa sfactory QoL, and a score of <60 as poor/ unsa sfactory 21 QoL). The collected data were entered and analyzed using IBM SPSS version 25.0 for Windows (SPSS Inc., Chicago, IL, USA). Normality of con nuous variables was checked using the Shapiro-Wilk test. The con nuous variables with normal distribu on were presented as mean SD and non-normal ± variables were reported as median (interquar le range [IQR]). To iden fy the significance of associa on between the outcome (TTQS) and each of independent variables, one way analysis of variance (ANOVA) was done. Pearson correla on coefficient of the different domains of quality of life score was calculated to find out the bi-variate rela onship among the domains of QoL. Hierarchical mul ple regression analysis between independent variables and as done to evaluate the predictors of TTQS w QoL. Independent variables with p<0.25 from one-way ANOVA with TTQS and the variables that were found significant in previous literature were selected for hierarchical regression analysis. A er controlling for par cipants' gender in the first step, the main effect of social factors was tested in the second step. In the third step, the main effect of trauma-related factors was tested. The variance infla on factor (VIF) was calculated to address the issue of mul -collinearity. The VIF of all the included independent variables was less than 2. A value of P< 0.05 was considered significant.

Demographics
One hundred and forty-one pa ents were enrolled in the study. The mean age of the pa ents was 32.95 ± 11.7 years (49.6% in the age group of 16-30 years) with the majority of the pa ents being males (74.5%). The majority (56.4%) of individuals were from joint families, and 102 individuals (72.3%) were married. There were 122 (86.5%) Hindus followed by 10 (7.1%) Chris ans. Regarding the social group, the majority were Janaja (38.3%) followed by Dalits (31.2%) and Brahmins (19.1%). Forty individuals (28.4%) had primary level educa on followed by 34 (24.1%) receiving secondary level educa on, and 28 (19.9%) were not formally educated. Only 5% individuals were unemployed before the trauma which increased to 78.7% a er trauma.

Clinical characteris cs
The most common SCI e ology was fall (72.4%) followed by road traffic accidents (23.3%). Among the pa ents, four (2.8%) reported having lost their rela ves during the trauma c incident. The majority of the pa ents were ASIA Impairment Scale (AIS) A (65.2%) followed by AIS C (15.6%). Using Interna onal Standard for Neurological Classifica on of Spinal Cord Injury (ISNCSCI), it was found that majority (70.2%) of the pa ents had T1-S4/5 injury with AIS A, B or C followed by equal number of pa ents (11.3%) with C1-C4, and C5-C8 injury with AIS A, B or C. Almost 25% individuals were tetraplegic. More than 90% of the SCI individuals had undergone opera ve management. Almost one fourth of the total SCI individuals had at least one AIS grade improvement among whom 3.5% individuals had an improvement by two AIS grade. The par cipants' demographic and clinical characteris cs along with their mean TTQS scores are presented in table 1.

Quality of life scores
The mean raw score and transformed score in the four domains are given in   The hierarchical mul ple regression analysis revealed that at step one, gender contributed significantly to the regression model (Male gender predic ng higher TTQS), F (1, 138) = 6.2, p< 0.01) and accounted for 4.3% of the varia on in TTQS (Table 4). Introducing the social factors (marital status, income, and social group) explained an addi onal 8.3% of the varia on in TTQS (Male gender, higher social group, and unmarried individuals predic ng higher TTQS) and this change in R² was significant, F (3, 135) = 8.1, p < 0.01 (Table  4). Male gender and unmarried individuals were the most predic ng variables (p< 0.01). Adding trauma-related factors (Rela ve loss during trauma, AIS at admission, treatment modality, and improvement in AIS) to the regression model explained an addi onal 14.5% of the varia on in TTQS and this change in R² was highly significant, F (4,131) = 7.55, p<0.001 (Table 4). Individuals who lost their rela ves during trauma and individuals who had no improvement in AIS grade following treatment/ rehabilita on had significantly lower TTQS (p<0.05).

DISCUSSION
More than 80% of the individuals had the TTQS of <60 signifying a very high rate of poor/ unsa sfactory QoL in the individuals with SCI in Nepal. Female gender, married status, loss of rela ve during trauma, AIS A or B during admission (Motor complete individuals), and no improvement in AIS grade a er treatment were the significant predictors of poor/ unsa sfactory QoL in the individuals with SCI in Nepal. However, age, family type, income, religion, educa on level, social group, injury e ology, mode of treatment (surgery vs conserva ve), and tetraplegic/ paraplegic status were not the significant predictors of QoL. The percentage of individuals with poor/ unsa sfactory QoL is staggeringly high in the individuals with SCI in Nepal. The years post-injury (YPI) could be a factor affec ng QoL and there are studies sugges ng that QoL in SCI would be 22,23 increased with YPI because increased YPI could help pa ents with SCI to adapt to both internal (illness-related) 24 and external circumstances. In our study, the injury to interview dura on is rela vely short with the YPI less than 1 year (pa ents were interviewed between 3 months to 1 year of injury) compared to other studies. Because of a short YPI, individuals in our study might not have got enough me for adap ng with the SCI related a ermath and complica ons leading to a lower QoL score. Furthermore, most of the individuals in the study have low-income and loweduca on. There are studies showing low-income and low 16 educa onal status related to lower QoL. Addi onally, the cross-cultural compara ve studies of WHOQOL-BREF showed that under the same background, higher life 25 sa sfac on scores were found in Western countries. The lower QOL scores from the Nepalese background cannot exclude the effect of cultural differences. Our study showed no rela onship between the age group and QoL. A similar finding is seen in the study by Barker 26 et.al. Contras ngly, in the study by Yong et al, a significantly 27 higher QoL was found in an elderly group. However, in the study by Wang et al., the finding was opposite with individuals with trauma c SCI at younger age having be er 28 QoL score. Due to a varying reports in different studies, the exact rela onship between age and QoL is s ll indeterminate. Evalua ng the gender, our study showed females with lesser 12 QoL scores which is similar to the finding by Krause JS. However, in the study by McColl et al., both the genders 23 rated their QoL equally. Similarly, loss of the close ones/ rela ves during trauma (exclusively road traffic accidents) was another predictor of poor QoL in our study popula on with the individuals who lost their rela ves during trauma scoring significantly less (41.08 ±8.43) compared to other individuals (51.04 ± 8.43). Individuals who lost their rela ves during trauma are more prone to develop pos rauma c stress disorder, depression, and other mental health related issues which can play a role in diminished QoL score. In our study, the QoL of individuals who had AIS A or B (Motor complete) was significantly worse compared to individuals with AIS C or D (Motor incomplete). Similarly, individuals with improvement in AIS grade a er treatment had significantly higher QoL scores. This finding is similar to 29,30 other studies.
Func onal independence is one of the major predictors of a good QoL among individuals with SCI with individuals with motor incomplete status having be er func onal independence. Literature suggests improving mobility or the ability to get around in an energy-efficient 30 manner may improve QoL in SCI. Marital status was a significant predictor of QoL among SCI individuals in our study. Married individuals had a significantly low QoL score compared to unmarried individuals (49.70 ±8.4 vs 53.50 ± 8.7). This finding is similar 29 to the study by Shin et al. Ge ng married adds more financial and social responsibili es to an individual. Therefore, if a married individual sustains SCI, he/she will definitely experience the pressure of not being able to fulfill their familial responsibili es, further leading to a sense of lesser life sa sfac on, and a lower QoL score. Pearson correla on showed physical health showing the highest posi ve correla on to the transformed overall QoL score. This is in contrast with the study done by Gautam

CONCLUSION
There is a very high rate of poor/ unsa sfactory QoL in individuals with SCI in Nepal. Female gender, married status, loss of rela ve during trauma, AIS A or B during admission, and no improvement in AIS grade a er treatment are significant predictors of poor/ unsa sfactory QoL. Physical health is the most important domain of QoL. The findings of this study can be implemented for formula ng policies for the overall improvement of QoL in individuals with SCI in Nepal.

LIMITATIONS OF THE STUDY
A detailed assessment of psychosocial and other social support factors, that may influence QoL in SCI, was not done in our study. Furthermore, the par cipa on of females and minori es was rela vely small; hence, factors specific to these popula ons may not have been accounted for in our analysis. Similarly, there is a probability of occurrence of observer bias and/or interviewer bias in those individuals who were interviewed either by trained physiotherapists or by the trea ng doctor. This study being a cross-sec onal study, it may also be difficult to derive a causal rela onship between SCI and QoL due to only a one-me measurement of the WHOQOL-BREF score.