Abstract
Background
Spinal cord injuries (SCI) affect various functions and therefore the Quality of life (QOL) of these patients. Regaining even partial function can lead to improved QOL; making it crucial to know which functions are most important for these patients.
Material and methods
This prompted us to conduct a survey in which subjects were asked to rank seven functions in order of importance to improve their quality of life. Survey was administered by personal interview of patients in different spinal injury rehabilitation centers across India.
Results
A total of 112 patients completed the survey. Regaining arm and hand function was ranked as first priority by quadriplegics while bowel/bladder function and walking movements were ranked as 2nd and 3rd priority. Paraplegics ranked return of walking movements as their first priority, bladder/bowel recovery as second and trunk strength/sexual function as 3rd priority.
Conclusion
This knowledge empowers us to focus our research on what is most important for their QOL.
Keywords
1. Introduction
The loss of functions following spinal cord injury (SCI) severely compromises the patient's health and quality of life (QOL).
1
Incidence of SCI in India is estimated to be around 20 per million with 2500 fresh cases added every year.2
In addition to physical, social and psychological suffering for these patients, taking care of these patients creates a significant burden for the healthcare system. Regaining even partial function can lead to improved QOL; making it crucial to know which functions are most important for these patients. In the face of limited resources; we need to prioritize areas of greatest demand and benefit in order to avoid mismatches between the patient's needs and caregiver's research focus.- Dhar A.
Few Steps Forward.
The Hindu,
2013
http://www.thehindu.com/scitech/health/fewstepsforward/article4978239.ece
Date accessed: May 5, 2017
3
This can be done by involving the SCI patients in decision-making to decide about priority of functional gain for their QOL.4
,5
We aimed to study this with the help of a survey.2. Material and methods
This study was conducted over a period of 6 months from November 2018 to April 2019 in a tertiary referral center in Central India. Before starting the study institutional ethical committee approval and written/informed consent from patients was taken. The survey questions were designed to determine which areas of functional recovery were most important for the functional QOL of SCI patients (Table 1).Seven priority areas of functioning (arm/hand use, ability to walk, bladder/bowel control, sexual function, upper body/trunk strength and balance, regaining sensations and absence of pain) known to have an important influence on functional QOL of patients with SCI were assessed. Participants were recruited from different spinal injury rehabilitation centers across India and survey was administered by personal interview. All patients with complete injury were included and patients recovering after SCI were excluded. Subjects were told about the survey and were explained every aspect of questionnaire and how to grade their priorities in their native language. Questions were about basic information like name, age, gender, level and duration of injury, presence of bed sores, their priorities in terms of return of functions; and lastly their suggestions or comments. The data was analyzed by calculating the percentage of patient desired return of different function using simple calculation. No specific software of statistical tests was used.
Table 1Regaining functions: Priorities of the SCI patients.
| Survey questionnaire |
|---|
| Name- Age- Gender - Address- Phone-
|
3. Results
112 patients with SCI (92malesand 20 female) with mean age of 39.86 years (range: 14–85 years) completed the survey. Mean duration of injury was 19.24 months (range: 1–240 months). 62 patients had duration of injury less than 1 year and 50 patients had more than 1 year.
Fifty participants had quadriplegia and 62 had paraplegia. In quadriplegics mean age was 41.46 years (range: 16–75) and this group included11female and 39 male patients. In paraplegics mean age was 38.47years (range: 14–85 years); there were 9 female and 53 male patients in this group. Twenty patients had bed sores (quadriplegics: 11, paraplegics: 9). Mean duration since quadriplegia was 25.66 months (range: 1–240 months); among these 22 had paralysis for less than 1year and 28 had paralysis for more than 1year.Mean duration since paraplegia was 14.40 months (range: 1–168 months); 39 had paralysis for less than 1 year and 23 had for more than 1year.
40% of quadriplegics ranked return of hand function as their first priority while return of walking movements was desired by 28%, regaining bowel/bladder function was desired by 18%, normal sensation by10%, upper body/trunk strength and balance by 8%, sexual function by 4%, and elimination of chronic pain by 2% (Table 2). Majority (34%) of Paraplegics wanted return of walking movements as their first priority while 24% wanted bladder/bowel control. Trunk strength and sexual function was desired by 14% and elimination of chronic pain by 4% only (Table 3).
Table-2Priorities of function in quadriplegic (n = 50).
| Function/priority | Arm/hand function | Upper body/trunk strength and balance | Bladder/bowel function | Sexual function | Elimination of chronic pain | Normal sensation | Walking movement |
|---|---|---|---|---|---|---|---|
| Priority-1 | 20 | 4 | 9 | 2 | 1 | 5 | 14 |
| Priority-2 | 8 | 3 | 16 | 5 | 4 | 6 | 13 |
| Priority-3 | 8 | 11 | 8 | 2 | 4 | 4 | 9 |
| Priority-4 | 6 | 22 | 7 | 0 | 1 | 10 | 5 |
| Priority-5 | 5 | 9 | 7 | 0 | 13 | 12 | 5 |
| Priority-6 | 2 | 1 | 2 | 6 | 22 | 7 | 4 |
| Priority-7 | 1 | 0 | 1 | 35 | 5 | 6 | 0 |
Table-3Priorities of function in Paraplegics (n = 62).
| Function/priority | Upper body/trunk strength and balance | Bladder/bowel function | Sexual function | Elimination of chronic pain | Normal sensation | Walking movement |
|---|---|---|---|---|---|---|
| Priority-1 | 7 | 17 | 7 | 2 | 12 | 17 |
| Priority-2 | 5 | 22 | 9 | 6 | 8 | 13 |
| Priority-3 | 22 | 9 | 7 | 2 | 8 | 8 |
| Priority-4 | 14 | 8 | 0 | 5 | 21 | 6 |
| Priority-5 | 5 | 4 | 4 | 18 | 9 | 8 |
| Priority-6 | 9 | 2 | 35 | 29 | 4 | 10 |
In para/quadriplegics with duration of paralysis more than1 year the priority for bladder/bowel control and sexual function decreased further while priority for walking and recovery of normal sensation increased (Table -4, Table-5).Recovery of sexual function was listed as last priority by both male and female patients (Table 6).
Table -4Change in priority in Paraplegics depending upon duration of paralysis.
| Function/priority | Priority1 | Priority2 | Priority3 | Priority4 | Priority5 | Priority6 | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Duration of paralysis | <1 year | >1 year | <1 year | >1 year | <1 year | >1 year | <1 year | >1 year | <1 year | >1 year | <1 year | >1 year |
| Upper body/trunk strength and balance | 4 | 3 | 3 | 2 | 15 | 7 | 7 | 7 | 3 | 2 | 7 | 2 |
| Bladder/bowel function | 12 | 5 | 15 | 7 | 5 | 4 | 4 | 4 | 2 | 2 | 1 | 1 |
| Sexual function | 7 | 0 | 6 | 3 | 7 | 0 | 0 | 0 | 4 | 0 | 15 | 20 |
| Elimination of chronic pain | 2 | 0 | 3 | 3 | 2 | 0 | 4 | 1 | 9 | 9 | 19 | 10 |
| Normal sensation | 4 | 8 | 2 | 6 | 6 | 2 | 17 | 4 | 6 | 3 | 4 | 0 |
| Walking movement | 8 | 9 | 6 | 7 | 3 | 5 | 4 | 2 | 8 | 0 | 10 | 0 |
Table-5Change in priority in Quadriplegics depending upon duration of paralysis.
| Function/priority | Priority1 | Priority2 | Priority3 | Priority4 | Priority5 | Priority6 | Priority7 | |||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Duration of paralysis | <1 year | >1 year | <1 year | >1 year | <1 year | >1 year | <1 year | >1 year | <1 year | >1 year | <1 year | >1 year | <1 year | >1 year |
| Arm/hand function | ||||||||||||||
| Upper body/trunk strength and balance | 2 | 2 | 0 | 3 | 5 | 6 | 10 | 12 | 4 | 5 | 1 | 0 | 0 | 0 |
| bladder/bowel function | 5 | 4 | 9 | 7 | 3 | 5 | 2 | 5 | 2 | 5 | 1 | 1 | 0 | 1 |
| Sexual function | 2 | 0 | 2 | 3 | 2 | 0 | 0 | 0 | 0 | 0 | 4 | 2 | 12 | 23 |
| Elimination of chronic pain | 0 | 1 | 3 | 1 | 1 | 3 | 0 | 1 | 3 | 10 | 10 | 12 | 5 | 0 |
| Normal sensation | 6 | 14 | 3 | 5 | 4 | 4 | 4 | 2 | 4 | 1 | 1 | 1 | 0 | 1 |
| Walking movement | 3 | 11 | 4 | 9 | 4 | 5 | 4 | 1 | 3 | 2 | 4 | 0 | 0 | 0 |
Table-6Return of sexual function for male and female patients.
| Sexual Function | Priority-1 | Priority-2 | Priority-3 | Priority-4 | Priority-5 | Priority-6 | Priority-7 |
|---|---|---|---|---|---|---|---|
| Paraplegic Male(n = 53) | 7 | 8 | 6 | 0 | 2 | 11 | 19(35.8%) |
| Quadriplegic Male(n = 39) | 2 | 3 | 2 | 0 | 0 | 4 | 28(71.7%) |
| Paraplegic Female(n = 9) | 0 | 1 | 1 | 0 | 2 | 0 | 5(55.5%) |
| Quadriplegic Female(n = 11) | 0 | 2 | 0 | 0 | 0 | 2 | 7(63.6%) |
4. Discussion
QOL for any patient is a complex and subjective issue; however its correct assessment assumes greatest significance for a SCI patient in whom there is no permanent cure available for paralysis of various functions.
6
Apart from motor deficit there are other severe impairments in bladder, bowel, cardiac, respiratory, sensory, and sexual functions which patient may desire to regain.7
(Table-7) Functional recovery among all other QOL parameters assumes paramount importance for this reason; and restoring any amount of function will improve the overall QOL of the patients.8
It is well known that patients judge their QOL issues better and more objectively than Doctors and other medical care givers.9
Therefore, patients with SCI must be involved in decision making to have patient-centered outcomes.10
This prompted us to conduct this survey to understand priorities of desired functional recovery among Indian SCI patients.Table-7Priority of function in different studies.
| Study | Priority1 | Priority2 | Priority3 | Priority4 | Priority5 | Priority6 |
|---|---|---|---|---|---|---|
| Anderson2004 n = 681 Tetraplegics Paraplegics | Arm/hand function Sexual function, | Bowel/bladder Bladder/bowel | ||||
| Bloemen-Vrencken 2005 n = 454 | Bladder function | Bowel function | Pain | Spasms | Sexual functions | Pressure sores |
| Brown-Triolo 2002 n = 94 | Walking | |||||
| Ditunno 2008 n = 31 | Bowel/bladder | Walking | Toileting, bathing | |||
| Hanson and Franklin, 1976 n = 128 Tetraplegics Paraplegics | Arms/hands, Walking | Bowel/bladder, Bowel/bladder function | Use of legs, Sexual function | Sexual function | ||
| Snoek 2004 n = 1475 Tetraplegics Paraplegics | Hands, bowel/bladder function bowel/bladder function | Sexual function Pressure sores | ||||
| Snoek 2005 n = 47 | Hand, bowel/bladder, sexual function, walking | |||||
| Wagner 2007 n = 50 | Upper extremity function | |||||
| Our study 2019 Tetraplegics Paraplegics | Hand Walking | Walking Bladder/bowel | Bladder/bowel Trunk strength Sexual function | Normal sensation Elimination of pain | Trunk strength | Sexual function |
The loss of arm/hand function makes quadriplegics totally dependent, unsurprisingly; this has been rated as the most important function to regain in quadriplegics
11
,12
which is also evident in our study. Similarly, return of walking movements was first priority for paraplegics and second priority for quadriplegics after hand function. In Indian patients ability to walk still remains a priority even in long term; probably they preferred to be more independent since majority of our paralyzed patients are in their youth and only earning member of their family.Many studies have found that bowel/bladder functions were high priority for persons with SCI.
11
,13
,14
Our study also showed that regaining bladder/bowel functions are among top three priorities both for paraplegics and quadriplegics.Sexual issues affecting patients with SCI are dysfunctions of erection and ejaculation for men and impaired sexual arousal and orgasm for women.
15
Spinal cord injured patients though disabled are very much concerned about their perceived loss of sexuality. Sexual impairments occur to some degree in nearly every SCI and many studies have reported improving sexual function as a highest priority to improving QOL.17
,18
In our study regaining sexual function was the last priority. This difference may be due to cultural differences and social inhibition of Indian patients to talk about it. Although patients feel free to discuss bowel and bladder problems; they hesitate to discuss sexual problems; leaving the onus of initiating such a discussion on the physician.19
Most studies have shown male patients desiring return to normal sexual function more than female patients; with few exceptions.17
In our study elimination of chronic pain, trunk strength and return of normal sensation in both paraplegics and quadriplegics were ranked as low priority. With increasing duration of paralysis the priority for elimination of chronic pain did not increase; unlike some other studies.
17
,20
This may be due to the fact that only 10–16% of our patients had chronic pain. With increasing duration of paralysis (>1 year) in both paraplegics and quadriplegics the priority for bladder/bowel control and sexual function decreases but priority for walking and recovery of normal sensation increases (Table-3, Table -4).
When patients were asked about any other comments the majority of patients asked for better functional recovery and they want to get back to their normal life as early as possible. Patients who developed bed sore were not happy about it and desired for better nursing care in order to prevent bed sores. Majority (80%) of the patients did not have access to exercise program and therefore do not believe that physiotherapy improves the function.
Logic dictates that the neurological level and extent of lesion determine the remaining residual function of the person with SCI and functional QOL dictates the choice of function to be regained.
17
Currently there is no “permanent cure” of paralysis which is the ultimate aim of treatment for these patients.In quadric/paraplegics variety of functional loss is present and as such there cannot be any trade off for these functions as all these functions are essential for QOL and majority of the patients desired all the functions to be regained.
13
,18
Conservative rehabilitation efforts like physiotherapy, electric stimulation, orthotics, CIC for bladder evacuation and back care for bed sores are being done to achieve functions. Various nerves/muscle transfers are currently being tried to have partial functional recovery for hand, bladder/bowel, sexual function, and walking ability.8
,21
, 22
, 23
However, it is important for researchers to know patient's desire about their needs and preferences for functional recovery. So the future research can be directed towards these patient oriented goals to improve their QOL.This study demonstrates the preferences of the SCI patients in terms of the importance of regaining functions to improve their functional status. One word of caution, that every spinal cord injury patient is different. Thus, what may be important to one person may be less of a concern for another even if they have a similar degree of injury. Further, what may be important to a person at one point in their life may have a different value at a later point in time. Therefore, the results of any survey should be used as general guidelines and a roadmap for priority for functional recovery with regard to SCI.
24
5. Conclusions
This study demonstrates the preferences of the SCI patients in terms of the importance of regaining functional recovery for their QOL. There was a significant variation in their priorities depending on their level/duration of injury. The first priority in quadriplegics was regaining arm and hand function; while the first priority in paraplegics was improvement in walking; the least priority rated for both was regaining sexual functions.
Source of support
Nil.
Author's contribution-
Prof. Pawan Agarwal- Conceptualization; Formal analysis; Investigation; Methodology; Roles/Writing - original draft; Writing - review & editing.
Mishra Anchal N - Formal analysis; Investigation; Methodology; Roles/Writing - original draft; Writing - review & editing.
Wankhede Sudesh- Formal analysis; Investigation; Methodology; Roles/Writing - original draft; Writing - review & editing.
Mukati Prachir - Formal analysis; Investigation; Methodology; Roles/Writing - original draft; Writing - review & editing.
Prof. Dhananjaya Sharma- Formal analysis; Investigation; Methodology; review & editing.
Conflicts of interest
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Source of support-nil.
Appendix A. Supplementary data
The following is the Supplementary data to this article:
- Multimedia component 1
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Article info
Publication history
Published online: August 08, 2019
Accepted:
August 1,
2019
Received in revised form:
August 1,
2019
Received:
May 28,
2019
Identification
Copyright
© 2019 Delhi Orthopedic Association. All rights reserved.
