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| ORIGINAL ARTICLE |
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| Year : 2021 | Volume
: 69
| Issue : 4 | Page : 861-866 |
Quality of Life after Surviving a Spinal Cord Injury: An Observational Study in South India
TV S. Divyalasya1, A Kiran Kumar2, NR Sahana Bhat3, Ram Lakhan4, Amit Agrawal5
1 Department of Pharmacology, Narayana Medical College Hospital, Chinthareddypalem, Nellore, Andhra Pradesh, India
2 Physical Medicine and Rehabilitation, Narayana Medical College Hospital, Chinthareddypalem, Nellore, Andhra Pradesh, India
3 Hospital Administration, Narayana Medical College Hospital, Chinthareddypalem, Nellore, Andhra Pradesh, India
4 Department of Health and Human Performance, Berea College, USA
5 Neurosurgey, Narayana Medical College Hospital, Chinthareddypalem, Nellore, Andhra Pradesh, India
| Date of Submission | 05-Apr-2017 |
| Date of Decision | 30-Dec-2017 |
| Date of Acceptance | 26-May-2018 |
| Date of Web Publication | 14-Aug-2021 |
Correspondence Address:
Dr. Amit Agrawal
Department of Neurosurgery, Narayana Medical College Hospital, Chinthareddypalem, Nellore - 524003, Andhra Pradesh
India
 Source of Support: None, Conflict of Interest: None  | Check |
DOI: 10.4103/0028-3886.323887
Background: Spinal cord injury (SCI) and its negative impact on the quality of life (QOL) is a significant public health concern in India. People with SCI suffer from serious health, economic, and social consequences in their lives. Often, care for SCI survivors is left to their immediate family members in India. Appropriate planning is needed for prevention, rehabilitation, health, and psychological care for SCI in the country.
Purpose: This study assessed the overall QOL of SCI survivors and their satisfaction levels with specific domains and their importance of QOL.
Materials and Methods: In this observational study, two instruments, Farrens and Power for QOL and Barthel Index for functional abilities, were administered to a convenience sample of participants drawn from Narayana Medical College, Nellore, in South India.
Results: Statistically, SCI survivors were found moderately and very satisfied with their QOL. Their perception about importance of health, functioning, social, and economic subscale also did not differ statistically.
Keywords: Barthel Index, Farrens and Powers QOL-SCI, quality of life, spinal cord injuryKey Message: People with SCI suffer from serious health, economic, and social consequences in their lives. As for every human being, person with SCI should live a happy and productive life expects and deserves to enjoy a QOL. In our study, SCI survivors were found moderately and very satisfied with their QOL. The rehabilitation and post event care need to focus on improving the QOL in SCI individuals.
How to cite this article:
S. Divyalasya T V, Kumar A K, Sahana Bhat N R, Lakhan R, Agrawal A. Quality of Life after Surviving a Spinal Cord Injury: An Observational Study in South India. Neurol India 2021;69:861-6 |
How to cite this URL:
S. Divyalasya T V, Kumar A K, Sahana Bhat N R, Lakhan R, Agrawal A. Quality of Life after Surviving a Spinal Cord Injury: An Observational Study in South India. Neurol India [serial online] 2021 [cited 2023 Dec 7];69:861-6. Available from: https://www.neurologyindia.com/text.asp?2021/69/4/861/323887 |
Spinal cord injury (SCI) and its negative impact on quality of life (QOL) is a significant public health concern in India. Every year, between 250,000 and 500,000 people across the world suffer from SCI.[1] The impact is very traumatic and devastating, leading to temporary and permanent impairment in sensory and motor functions, and it affects the QOL of survivors. People with SCI suffer from serious health, economic, and social consequences. SCI is often life-threatening, and it is associated with a two to five times higher risk of premature death, with survival rates from SCI in low- and middle-income countries being worse.[1] The event of SCI often affects the functioning of central nervous, musculoskeletal, cardiovascular, urinary, and reproductive systems and also leads to anatomical damages.[2] The majority of SCI survivors suffer from a higher burden of physical and mental health complications. Individuals with SCI are highly vulnerable to infections; this risk particularly increases in the absence of quality health and personal care.[3] The personal, sexual, family, occupational, and social aspects of life of an individual are also affected.[4]
Irrespective of limitations, every human being expects and deserves to enjoy a QOL. It is also expected that person with SCI should live a happy and productive life. The rehabilitation and post event care focus on improving the QOL in SCI individuals. QOL is a subjective term; however, it has been explained in many ways. QOL is termed as a capacity of fulfilling basic human needs and priorities in life.[5] The World Health Organization (WHO) has offered a person-centered definition of QOL in 1997 which is based on an individual's performance in six domains, namely, the individual's physical health, psychological state, level of independence, social relationship/s, personal beliefs, and their relationship to their environment.[6] In simplified terms, the QOL is considered an individual's perception of their position in life in the context of their culture and value system in which they live and in relation to their goals, expectations, standards, and concerns.[6],[7]
Restoration of activities of daily living (ADLs) and QOL are the main objectives of the rehabilitation of SCI survivors. Often, it is believed that rehabilitation can help SCI survivors regain a satisfactory level of well-being. However, several social and psychological factors play an important role in facilitating rehabilitation and achieving optimum results.[8] Physical variables, age, and gender were suggested to be negatively associated with QOL.[9],[10] Personal traits and characteristics such as positive effect and hope,[9] high self-efficacy and optimism,[11] and a sense of coherence[12] favorably support the psychological state of SCI. Supportive family, friends, caregivers, and a friendly environment help regain QOL in individuals with SCI.[11],[13],[14] The excessive risk of comorbid neurogenic, cardiovascular, urinary, respiratory tract infections, osteoporosis, fractures, pressure ulcers, depression, and anxiety conditions leads to intolerable stress on SCI patients. Stress negatively affects self-efficacy and optimism that further wanes the psychological state and increases suicidal feelings and behavior.[15]
To plan an effective rehabilitation for SCI survivals, it is important to understand and describe QOL in the view of affected individuals. It is more important to understand the psychological and subjective well-being of the person to plan a rehabilitation. Recently, research interest has increased in understanding the QOL in SCI-affected individuals across the world. However, research in this crucial area of public health is very scarce in India. The 36-Item Short Form Survey Instrument and WHOQOL-BREF instruments have been popularly used in assessing the QOL.[7] These tools are very comprehensive and applicable in a variety of health conditions. However, we preferred to use Ferrans and Powers Quality of Life instrument (QLI-SCI) in our research because of its higher relevance to our study population.[16],[17],[18] This instrument is specifically designed to assess subjective satisfaction with various domains considering their relative importance.[19] Barthel Index (BI) was another instrument that we preferred to use to obtain a complete profile of an individual in performing their ADLs.[20],[21]
| » Materials and Methods | |  |
It is an observational research design; data were collected 4 years after SCI event. The research was conducted at the Department of Neurosurgery, Narayana Medical College, Nellore, Andhra Pradesh, India. The study was approved by the institutional review board. A convenient sampling was applied, and a total of 198 people who were treated for SCI were contacted and invited for the study. Participants with all types and severities of SCI were included in the sample. In all, 55 of them agreed to participate in the study. Survivors who were either unable to come or did not have transportation support were interviewed over phone. People who were reported dead by the family members as a result of SCI or due to its secondary complications were excluded from the study. After obtaining consent for participation, data were collected by interviewing participants on interviewer administered questionnaires by trained medical doctors and medical trainees in the department who were native Telugu speakers.
A predesigned proforma which is used at the Department of Neurosurgery for inpatients was used in collecting the demographic information of the participants. QLI-SCI and BI were translated in Telugu by a medical researcher who had proficiency in English and Telugu, and both instruments were validated on Telugu-speaking SCI individuals before their administration on study participants. QLI-SCI has two parts. Part 1 measures the satisfaction of an SCI individual, and part 2 measures the importance, both in relation to four domains which include health and functioning, psychological/spiritual, social and economic, and family. It is a Likert instrument, and each part has 37 items which are rated on numerical values from 1 to 6, wherein 1 is measured as very dissatisfied/very unimportant and 6 as very satisfied/very important. BI was used in assessing the functional abilities of an individual with an SCI event. The instrument assesses functional ability in 10 areas of ADLs: bowel, bladder, grooming, toilet use, feeding, transfer, mobility, dressing, stairs, and bathing.[22] Depending on the level of performance in each area, an individual is given a score. A total of 100 points can be obtained. People between 0 and 20 points are considered totally dependent, 21 and 60 severely, 61 and 90 moderately, and 91 and 99 slightly dependent. People with an ideal score of 100 are considered independent.[22]
Descriptive statistics in terms of number, percentage, and mean are used in describing the overall QOL profile with satisfaction, importance, and functional abilities. Statistical Software for Social Science version 20 was used.
| » Results | | |
Scores on Farrens and Power instrument in both parts did not show a significant difference. SCI survivors were found equally divided between moderately satisfied and very satisfied. Similarly, the survivors did not have much of a difference in their perception about the importance of health and functioning and social and economic subscale. However, it is crucial to note that all survivors of SCI found psychological, spiritual, and family help as highly important. The detailed results of both parts of the scale with specific domains are described in [Table 1] and [Table 2]. The results indicate that only 31% of SCI survivors could independently manage their ADL, whereas 55% needed partial help and 14% were totally dependent on care givers, who, in most cases, were family members [Table 3] and [Figure 1]. It can be inferred from the results that only 31% of SCI survivors have a chance to return to their work and continue their economic activities in India. The remaining 69% of SCI survivors require partial to total care. SCI survivors needing total care also may not be able to hold jobs, while carrying out an economic activity for partially dependent may be possible. Overall, there are higher chances that the group of partially and fully dependent patients may not be able to acquire or retain jobs. They are also at a higher risk of incurring a higher medical and personal care cost. In most cases, the other earning family member such as the spouse spends significant time in caring for the individual, which further leads to economic loss for the family. | Table 3: Functional ability for activities of daily living on Barthel Index
Click here to view |
| » Discussion | | |
The SCI survivors in a small percentage find themselves satisfied with their future; however, on part 2, a very small number of people demonstrated the importance of a happy future. This aspect is very crucial in defining the QOL. Irrespective of physical and personal circumstances, individuals tend to see a happy future, but a large group of SCI survivors do not see the importance of a good future. There are chances that a significant number of SCI survivors have lost their hope for a better future and QOL.[23],[24] There are also chances that a large number of SCI survivors are at an older age, and due to their advanced age, severity of injury, its implications, and due to preexisting psychological disorder may not be able to see chances for a full or functional recovery.[25]
Our finding of this study strongly correlates with studies conducted in India and adjoining countries.[26],[27] SCI individuals demonstrated that psychological, spiritual, and family support are vulnerable and have difficulties in meeting their social, occupational, health, and personal needs. It is reported that people who go through psychological trauma of SCI are more susceptible of psychological problems.[27],[28],[29] People in this study who need partial support in performing their ADL may not be able to acquire full function of an activity due to their poor psychological health. In developing countries, the care for SCI survivors is mainly provided by the immediate family members and by close relatives if the immediate family is absent.[30] Thus, prevention, management, and care for SCI survivors should be best planned in a social ecological framework in India.[31],[32] In addition, other options must be explored for providing long-term care to SCI survivors. Keeping the fact in consideration that many SCI survivors may not have a family member or relative available. About 69% of SCI survivors either totally or partially are dependent on their caregivers. There is a need that caregivers should be provided training so that they can offer better care.[28],[33] A provision of psychological help for caregivers should also be made as this group becomes highly vulnerable to psychological problems with long-term care responsibilities.
This study has had a few limitations with its methodology, but its findings are highly crucial for public health, health care, and rehabilitation of SCI in India. This study provides the profile of SCI individuals in several domains of independent living. Such estimates are lacking in India. Due to the influx of road vehicles, increased speed, poor roads, poor traffic rules, regulations, and their implementation, the risk of SCI is further increasing in India. In that case, the assessment of SCI outcomes is very important for planning purposes. This study represents both urban and rural populations and therefore, its findings are applicable for both settings. Future studies may assess the mortality rate due to SCI in relation to age, gender, settings, other demographic variables, the determinants of SCI, psychological and economic burden on family, and barriers in accessing the services for improving the QOL. Future studies should use better methodology, sample size, and statistical analysis. The type of SCI, severity of impairment, types of paralysis, and management areas in surgical, medical, psychological, and social should be included as study variables, and in relation to these variables the findings should be described.
Acknowledgment
The authors sincerely thank Dr. Manoj Sharma, professor at Jackson State University, USA, for editing the language of the article.
Financial support and sponsorship
None.
Conflicts of interest
There are no conflicts of interest.
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[Figure 1]
[Table 1], [Table 2], [Table 3]
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