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Priorities of desired functional recovery in Indian spinal cord injury patients

Published:August 08, 2019DOI:https://doi.org/10.1016/j.jcot.2019.08.001

      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).
      • Hicken B.L.
      • Putzke J.D.
      • Richards J.S.
      Bladder management and quality of life after spinal cord injury.
      Incidence of SCI in India is estimated to be around 20 per million with 2500 fresh cases added every year.
      • Dhar A.
      Few Steps Forward.
      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.
      • Grant-Pearce C.
      • Miles I.
      • Hills P.
      Mismatches in priorities for health research between professionals and consumers.
      This can be done by involving the SCI patients in decision-making to decide about priority of functional gain for their QOL.
      • Bauman A.
      • Fardy H.
      • Harris P.
      Getting it right: why bother with patient centered care?.
      ,
      • Donnelly C.
      • Eng J.
      • Hall J.
      • et al.
      Client-centred assessment and the identification of meaningful treatment goals for individuals with a spinal cord injury.
      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-
      • 1.
        Level of spinal cord injury?
      • 2.
        Time since injury?
      • 3.
        Pressure sore –present/absent
      • 4.
        What gain of function would improve your life?
        • Rank the following functional recovery in order of importance to you,
          • Arm/hand function
          • Upper body/trunk strength and balance-
          • Bladder/bowel function
          • Sexual function-
          • Elimination of chronic pain-
          • Normal sensation-
          • Walking movement-
      • 5.
        Any further comments

      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/priorityArm/hand functionUpper body/trunk strength and balanceBladder/bowel functionSexual functionElimination of chronic painNormal sensationWalking movement
      Priority-1204921514
      Priority-2831654613
      Priority-381182449
      Priority-4622701105
      Priority-5597013125
      Priority-621262274
      Priority-710135560
      Table-3Priorities of function in Paraplegics (n = 62).
      Function/priorityUpper body/trunk strength and balanceBladder/bowel functionSexual functionElimination of chronic painNormal sensationWalking movement
      Priority-1717721217
      Priority-252296813
      Priority-32297288
      Priority-414805216
      Priority-55441898
      Priority-6923529410
      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/priorityPriority1Priority2Priority3Priority4Priority5Priority6
      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 balance4332157773272
      Bladder/bowel function12515754442211
      Sexual function70637000401520
      Elimination of chronic pain20332041991910
      Normal sensation4826621746340
      Walking movement8967354280100
      Table-5Change in priority in Quadriplegics depending upon duration of paralysis.
      Function/priorityPriority1Priority2Priority3Priority4Priority5Priority6Priority7
      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 balance2203561012451000
      bladder/bowel function54973525251101
      Sexual function2023200000421223
      Elimination of chronic pain01311301310101250
      Normal sensation614354442411101
      Walking movement311494541324000
      Table-6Return of sexual function for male and female patients.
      Sexual FunctionPriority-1Priority-2Priority-3Priority-4Priority-5Priority-6Priority-7
      Paraplegic Male(n = 53)786021119(35.8%)
      Quadriplegic Male(n = 39)23200428(71.7%)
      Paraplegic Female(n = 9)0110205(55.5%)
      Quadriplegic Female(n = 11)0200027(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.
      • Post M.W.
      Definitions of quality of life: what has happened and how to move on.
      Apart from motor deficit there are other severe impairments in bladder, bowel, cardiac, respiratory, sensory, and sexual functions which patient may desire to regain.
      • Blight A.R.
      Miracles and molecules—progress in spinal cord repair.
      (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.
      • Bryden A.M.
      • Peljovich A.E.
      • Hoyen H.A.
      • Nemunaitis G.
      • Kilgore K.L.
      • Keith M.W.
      It is well known that patients judge their QOL issues better and more objectively than Doctors and other medical care givers.
      • Slevin M.L.
      • Plant H.
      • Lynch D.
      • Drinkwater J.
      • GregoryWM
      Who should measure quality of life, the doctor or the patient?.
      Therefore, patients with SCI must be involved in decision making to have patient-centered outcomes.
      • Whalley-Hammell K.R.
      Spinal cord injury rehabilitation research: patientpriorities, current deficiencies and potential directions.
      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.
      StudyPriority1Priority2Priority3Priority4Priority5Priority6
      Anderson2004 n = 681

      Tetraplegics

      Paraplegics
      Arm/hand function

      Sexual function,
      Bowel/bladder

      Bladder/bowel
      Bloemen-Vrencken 2005 n = 454Bladder functionBowel functionPainSpasmsSexual functionsPressure sores
      Brown-Triolo 2002 n = 94Walking
      Ditunno 2008 n = 31Bowel/bladderWalkingToileting, 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 = 47Hand, bowel/bladder, sexual function, walking
      Wagner 2007 n = 50Upper extremity function
      Our study 2019

      Tetraplegics

      Paraplegics
      Hand

      Walking
      Walking

      Bladder/bowel
      Bladder/bowel

      Trunk strength

      Sexual function
      Normal sensation

      Elimination of pain
      Trunk strengthSexual 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
      • Snoek G.
      • Ijzerman M.
      • Post M.
      • Stiggelbout A.
      • Roach M.
      • Zilvold G.
      Choice based evaluation for the improvement of upper-extremity function compared with other impairments in tetraplegia.
      ,
      • Connolly S.
      • McIntyre A.
      • Mehta S.
      • Foulon B.
      • Teasell R.
      Upper limb rehabilitation following spinal cord injury.
      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.
      • Snoek G.
      • Ijzerman M.
      • Post M.
      • Stiggelbout A.
      • Roach M.
      • Zilvold G.
      Choice based evaluation for the improvement of upper-extremity function compared with other impairments in tetraplegia.
      ,
      • Simpson L.A.
      • Eng J.J.
      • Hsieh J.T.C.
      • Wolfe D.
      SCIRE Research Team
      The health and life priorities of individuals with spinal cord injury: a systematic review.
      ,
      • Estores I.M.
      The consumer's perspective and the professional literature: what do persons with spinal cord injury want?.
      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.
      • Kennedy P.
      • Lude P.
      • Taylor N.
      Quality of life, social participation, appraisals and coping post spinal cord injury: a review of four community samples.
      Spinal cord injured patients though disabled are very much concerned about their perceived loss of sexuality.
      • Cole T.
      Sex and the paraplegic.
      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.
      • Anderson K.
      Targeting recovery: priorities of the spinal cord-injured population.
      ,
      • Anderson K.D.
      • Borisoff J.F.
      • Johnson R.D.
      • Stiens S.A.
      • Elliott S.L.
      The impact of spinal cord injury on sexual function: concerns of the general population.
      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.
      • Miller D.K.
      Sexual counseling with spinal cord-injured clients.
      Most studies have shown male patients desiring return to normal sexual function more than female patients; with few exceptions.
      • Anderson K.
      Targeting recovery: priorities of the spinal cord-injured population.
      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.
      • Anderson K.
      Targeting recovery: priorities of the spinal cord-injured population.
      ,
      • Siddall P.J.
      • McClelland J.M.
      • Rutkowski S.B.
      • Cousins M.J.
      A longitudinal study of the prevalence and characteristics of pain in the first 5 years following spinal cord injury.
      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.
      • Anderson K.
      Targeting recovery: priorities of the spinal cord-injured population.
      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.
      • Simpson L.A.
      • Eng J.J.
      • Hsieh J.T.C.
      • Wolfe D.
      SCIRE Research Team
      The health and life priorities of individuals with spinal cord injury: a systematic review.
      ,
      • Anderson K.D.
      • Borisoff J.F.
      • Johnson R.D.
      • Stiens S.A.
      • Elliott S.L.
      The impact of spinal cord injury on sexual function: concerns of the general population.
      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.
      • Bryden A.M.
      • Peljovich A.E.
      • Hoyen H.A.
      • Nemunaitis G.
      • Kilgore K.L.
      • Keith M.W.
      ,
      • Moberg E.
      Surgical treatment for absent single hand grip and elbow extension in quadriplegia. Principles and preliminary experience.
      ,
      • Bertelli J.A.
      • Ghizoni M.F.
      Nerve transfers for restoration of finger flexion in patients with tetraplegia.
      ,
      • Agarwal P.
      • Sharma D.
      • Wankhede S.
      • Jain P.C.
      • Agrawal N.L.
      Sciatic nerve to pudendal nerve transfer: anatomical feasibility for a new proposed technique.
      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.
      • Zerhouni E.
      The NIH roadmap.

      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:

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