The individual with spinal cord injury is the most important member of the interdisciplinary team of health care professionals who provide care and researchers who progress treatments. The consumer voice is critical to understanding priorities and preferences. A literature search was conducted to identify consumer-level contribution, yielding 68 articles. Functional recovery priorities of motor and bladder/bowel function were universal. Priorities of secondary complications mirrored functional recovery, highlighting the impact that mitigating secondary complications can have on functional recovery. Imbedded within interventional preferences are those priorities, balanced between risks and benefits. Improving independence was consistently weighed against fear of functional decline.
Key points
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Functional recovery priorities are universal: motor and bladder/bowel recovery are priorities regardless of level of injury, completeness of injury, injury over time, gender, age, or culture.
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Parallels exist among priorities of functional recovery and secondary complications: influencing one affects the other.
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Priorities are imbedded within interventional preferences: risks and benefits weigh potential gain or loss of independence.
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Clinical care: it is important to ask individuals their priorities to partner in achieving those goals.
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Research priorities: repeated evidence of priorities for functional recovery and secondary complications highlights the necessary shift toward affecting consequences of spinal cord injury.
Introduction and methods
After spinal cord injury (SCI), individuals experience a range of impaired functions that affect all aspects of life: physical and psychological health, work and education, relationships, and social participation. SCI affects motor, sensory, and autonomic functions, resulting in bladder, bowel, and sexual impairments. After the initial insult of SCI, secondary complications can affect every body system.
The keystone of care after SCI is to optimize function and independence and enhance quality of life (QOL). There are many health professionals, team members, and researchers who participate in this care; however, the person with SCI is the central and most important agent. As such, understanding consumer priorities for functional recovery and secondary complications and preferences for interventions is vital in the care and well-being of people with SCI (PSCI). The National Institute on Disability, Independent Living, and Rehabilitation Research has consistently emphasized the importance of consumer relevance in the development of a scientific agenda to target the needs of people with disabilities. Asking PSCI what matters shapes clinical care and prioritizes research from basic science through translational to clinical. Summarizing these priorities and preferences leads to action.
A literature review was conducted in PubMed for relevant articles from 1978 to January 2024 using the following search terms and associated PubMed-generated MeSH terms: “spinal cord injury” with methods type “qualitative,” “semi-structured,” “interview,” “focus group,” or “survey” plus consumer-focused terms, “priorities,” “perception,” “perceived,” “preferences,” “person-centered care,” “barrier,” or “facilitator.” Fig. 1 demonstrates the process of article selection. Results were limited to English language and human studies and returned 1113 titles. Articles included in the literature review met the following inclusion criteria: (1) PSCI who were 16 years and older; (2) directly questioned PSCI; (3) data collected related to priorities of functional recovery, priorities of secondary complications, and preferences for interventions; and (4) published in peer-reviewed journals.
Based on inclusion criteria, review of article titles generated 105 results. Abstracts were reviewed and a selection underwent consensus review, yielding 46 articles. A total of 59 articles were excluded for the following reasons: did not fit the inclusion criteria, addressed topics outside the review’s scope, such as environmental factors, employment, educational materials, and QOL domains, or addressed topics too narrowly, for example, secondary complications in specific settings. In addition to the results generated from PubMed, a manual search (eg, of review articles, systematic reviews, , and known publications) resulted in 22 additional articles included. A total of 68 articles were selected, representing consumer-level participation totaling 11,301 PSCI (mean 171 PSCI per study, standard deviation [SD] 254, median 61.5 PSCI per study). Articles were placed into three nonmutually exclusive subject areas: priorities of functional recovery, priorities of secondary complications, and preferences for interventions.
Discussion
Priorities of Functional Recovery
Of the 68 articles selected, 11 pertained to consumer priorities of recovery after SCI. These studies represented 3502 PSCI (mean 318 per study, SD 468). Across studies, motor function (arm/hand function and standing/walking), bladder and bowel function, and sexual function were repeatedly the most frequently reported highest priorities among all PSCI. Fig. 2 provides a graphical representation of weighted priorities for those with tetraplegia and paraplegia and indicates that completeness of injury, injury over time, gender, age, and culture affect priorities.
Level of injury
Many studies investigated the role level of injury (LOI) has on functional priorities. Among the studies that compared functional priorities in people with tetraplegia, 80% of studies identified arm/hand function as a top priority. One study found reduction of pain to be the highest priority in those with tetraplegia, which was echoed as a secondary priority in another study. , Another study found bladder and bowel function tied as top priority with arm/hand function. There was no consensus among the second highest priority, although sexual function and bladder and bowel function were among the most common functional priorities.
Among those with paraplegia, there was more variation across studies. Bladder and bowel function and sexual function were consistently highly prioritized, as in the tetraplegia population, highlighting commonalities across levels of injury. Those with paraplegia also commonly prioritized walking function and pain and spasticity. Arm/hand function and pressure injuries rounded out the remainder of frequently cited priorities. ,
Completeness of injury
Three studies explored how completeness of injury affected functional recovery priorities. , , There were commonalities across those with incomplete and complete SCI, who rated bladder and bowel function as high priorities. Both groups also prioritized walking function, although more significantly in the incomplete SCI cohort. , Individuals with incomplete SCI were also more likely to rate stairs of high importance, whereas those with complete SCI rated bladder and bowel, toileting, and sexual function highly. ,
One study comprised entirely of people with tetraplegia studied differences based on motor completeness at the level of C6 and above versus motor incompleteness at levels C7 -T1. Standing and walking function as well as sexual function were of high importance for both groups; however, sexual function was of highest importance for the individuals with motor incomplete C7-T1.
Injury over time
SCI over time and its effect on functional priorities was an area of interest among four studies, although different times postinjury were selected in each of the articles, making comparisons challenging. , , , Despite this, improving pain became an increasingly important priority over time, when comparing cross-sectional populations at more than 3 years after injury and more than 10 years after injury, respectively. , Ditunno and colleagues presented data that not only included time of injury compared cross-sectionally but also comparison of the same individuals over time: at 1, 2, and 5 years. In these individuals, bladder and bowel function remained high over 5 years after injury, whereas walking, toileting, and toilet transfers became more important over time in the same individuals.
Gender and age differences
Sexual function was found to be of gendered significance, however, inconsistently across studies. , , , Anderson found sexual function slightly more important to women with tetraplegia, whereas other studies found men prioritized sexual function. , While Anderson found a striking preference for walking among men with paraplegia, Lo and colleagues found walking much more preferred by women. Among older PSCI, Ditunno and colleagues found walking was a higher priority in those older than 50 years.
Cultural differences
Of the studies discussed, their participants come from five different continents and seven different countries: United States, Brazil, United Kingdom, Netherlands, Korea, India, and Australia. The heterogeneity of PSCI sampled reveals cultural influences. PSCI represented in these studies from the United States, Brazil, United Kingdom, Netherlands, India, and Australia all regarded sexual function as important for recovery. Interestingly, one study from Korea did not find that participants rated sexual function highly. Among other highly rated functions, motor function (arm/hand and standing/walking) and bladder and bowel function were consistently high regardless of country of origin. Although arm/hand function was of utmost importance for both American and Australian PSCI, walking was more important to the American population, and reduction in pain was more valued in the Australian population. depicts universal functional priorities among PSCI.
Degree of meaningful recovery
Although many studies rank the importance of various functions in the SCI population, there is little commentary on what equates to meaningful functional recovery. One exception is a study in which persons with C5 traumatic, complete SCI participated. The results indicated that meaningful recovery includes improving the American Spinal Injury Association Impairment Scale (AIS) grade, recovery of functional motor levels, especially hand function, and neurologic improvements within (AIS) C and D grades. The results are significant in describing meaningful recovery in the absence of AIS grade improvement. In addition, substantial clinical benefit can be achieved with only small neurologic improvements in AIS C and D grades.
Priorities of Secondary Complications
Of the 68 articles selected, 24 pertained to consumer priorities of secondary complications after SCI. These studies represented 4120 PSCI (mean 183 per study, SD 183).
The landscape of priorities regarding secondary complications is broad. Consistently across studies, there are parallels among priorities of functional recovery and secondary complications that highlight the potential impact that changing secondary complications have on functional recovery and vice versa.
Many studies described rank-order prevalence and priorities of secondary complications. Bladder, bowel, spasms, pain, and sexual function were most prevalent. Predictably, these align with the functional recovery priorities. Additional secondary complications included edema, pressure injury, abnormal sensations (distinct from pain), and infections. In two large studies representing more than 900 participants, PSCI reported an average of eight secondary complications of SCI, demonstrating the enormous impact that secondary complications and their management, long-term consequences, and care needs have on PSCI. , Fig. 3 describes similarities among priorities and how restoring function or mitigating complications affect each other.
Bladder
The most frequent challenges with bladder function among PSCI were urinary tract infections (UTIs), bladder incontinence, autonomic dysreflexia (AD), clogged catheter, and bladder or kidney stones. , , Bladder complications had more interference on activities of daily living (ADLs) as compared with social activities and employment, education, and volunteering activities. PSCI ranked priorities of restoration of bladder function in the order of descending importance: catheter-free voiding, urinary continence, independence, no complications, sense of fullness, and no medications.
Bowel
There was consensus regarding the most challenging aspects of bowel function: constipation, incontinence, loose stool/diarrhea, hemorrhoids, bleeding, AD, and colostomy complications. , Similar to bladder complications, there were greater levels of interference in ADLs compared with social activities and employment, education, and volunteering activities. PSCI ranked priorities of restoration of bowel function in the order of descending importance: fecal continence, predictability, reduced time, independence, sense of fullness, no complications, and no medications.
Despite its utmost importance, there is relative paucity of studies investigating bladder and bowel from a consumer perspective.
Pain
More studies investigated pain as a secondary complication of SCI than any secondary complication. , A common research focus was the relationship between pain and its effect on daily activities, social activities, and sleep, which established the interference of pain with these aspects of daily life. , , , ,
Widerström-Noga and colleagues provided a detailed analysis into the relative importance of facilitators and barriers among those living with chronic pain after SCI. They found multiple statements reaching a significant level of agreement, from which four facilitators were identified: information regarding pain and treatments, resilience, coping, and medication use. Five barriers were poor communication from provider, pain impact and limitations, poor ability to communicate about my pain, difficult nature of pain, and treatment concerns.
Studies focused on chronic neuropathic pain (CNP) among PSCI, more so than any other pain type. , , , All CNP studies were qualitative with thematic development, which is an iterative process, making comparisons challenging. Despite this, there were similarities in themes across studies. Buscemi and colleagues describe three themes echoed in multiple studies: (1) the continuous influence of pain in life; (2) constructing knowledge about living with CNP with subthemes, (2a) understanding CNP and (2b) finding out what works; and (3) developing a specialist practice. There were concerns about adverse side effects and risk of addiction in using pain medications. Lastly, PSCI prioritized moving forward with pain, and themes included refining core values, learning to live with the pain, and integrating pain.
A single study by Tsai and colleagues investigated nonneuropathic pain, and their findings support nonneuropathic pain, commonly affecting shoulders and lower back, as an important priority among PSCI.
Sexual function
Top reasons for pursuing sexual activity highlight gender differences: women prioritized intimacy need and need to keep a partner, whereas men reported intimacy and sexual need. In both women and men, SCI had altered their sense of self, and improving sexual function was important to their QOL. , Secondary complications of bowel and bladder accidents and AD during sex were more common and interfered with sex more often in women. , Both women and men developed new areas of arousal about their LOI, but body location differed: women reported the best arousal from simulation of the head/neck followed by the torso, whereas men reported touching genitals resulted in the best arousal. ,
As with the relative dearth of studies focusing on bladder and bowel priorities after SCI, the same can be concluded regarding sexual function despite its consistent rank as one of the highest priorities for PSCI. Despite this, there is high-quality evidence of priorities for sexual function among PSCI.
Preferences for Interventions
Of the 68 articles selected, 38 examined preferences for interventions related to SCI. These studies represented 5121 PSCI (mean 138 per study, SD 183).
Interventions for PSCI target both functional recovery and secondary complications. They span from acute management, in the first hours after injury, to chronic SCI, which spans decades. Interventions include pharmacologic treatments, nonpharmacologic and complementary treatments, assistive technologies, neuroprostheses, upper extremity reconstructive surgery, and clinical trials. Imbedded in intervention preferences are the functional priorities that PSCI consider when deciding what interventions are worth pursuing. When considering more invasive interventions, PSCI weigh risks and benefits, as it relates to their priorities for functional recovery and mitigation of secondary complications.
Pharmacologic treatments
Five studies explored preferences for pharmacologic treatment, which most specifically focused on cannabis use among PSCI. , , , , Most individuals were currently receiving treatment of pain, and regarding treatment effectiveness, cannabis/alcohol was rated effective to a large extent by most respondents (83%), despite its use among a small group. After alcohol/cannabis, nonsteroidal antiinflammatory drugs and benzodiazepines were somewhat/to a large extent effective followed by anticonvulsants, for example, gabapentin, other medications, opioids, and antidepressants.
The legalization of medicinal and recreational cannabis has sparked interest in studying its use among PSCI. Rates of cannabis use vary from 36% to 54% current or former users and 46% to 64% never users. , Among all participants, attitudes regarding cannabis were overall favorable, with more than 9 in 10 respondents believing cannabis has medicinal effects, should be made available to people with qualifying conditions, and is safer to take than prescription drugs.
Very few studies queried PSCI regarding their preferences for acute management of SCI, despite many individuals reporting consciousness and ability to effectively communicate in the first hours after injury. Bower and colleagues explored preferences for administration of methylprednisone in the acute management of SCI, a contentious topic in the medical community that has undergone its more recent revision in 2017. Of the 24 participants who arrived within 8 hours of injury, only one recalled a physician providing the opportunity to decide on administration. The majority stated that a small neurologic benefit gained from methylprednisone was very important to them, with little concern for possible side effects, such as pressure injuries.
Nonpharmacologic and complementary treatments
Heutnik and colleagues and Norrbrink Budh and colleagues examined preferences for nonpharmacologic and complementary treatments for SCI. PSCI reported nonpharmacologic treatments were more effective than pharmacologic, with massage/relaxation and physiotherapy/exercise rated effective to a large extent by more than 90% of respondents. ,
Assistive technology
Dicianno and colleagues investigated preferences and functional priorities for a variety of assistive technologies among veterans in a large study of overall 1000 participants, approximately half of whom were PSCI. Assistive technologies that were important to all respondents included smart wheelchair design, transfer devices, smart home technology, exoskeletons, and alternative power sources for wheelchairs. The most critical priorities for participants were to live without a caregiver or with less assistance, to go to work or school and be more productive, to meet all their personal mobility needs, and to travel freely. Among people with tetraplegia, human machine interface (or brain computer interface [BCI]) was more important, whereas a manual wheelchair that could fold and disassemble was more important to those with paraplegia. Challenges in developing, choosing, and maintaining assistive technology were revealed, as most participants reported not playing an active role in decision-making for new mobility equipment and rarely or never having support to maintain assistive technology long term. Funding and procedural processes were identified as barriers.
Exoskeletons
Four studies surveyed consumer preferences regarding robotic or powered exoskeletons for gait training and restoration of overground walking. Common themes among all users included the following: desire to be upright and mobile; able to do everyday activities like their peers; physical benefits beyond walking, including improved posture, stretching, weight bearing, prevention of pressure injuries, wound healing, reduction of spasticity and pain, improved bladder and bowel function, decreased UTIs, and improved sensation; psychological benefits were being at eye level, improved mood and sleep quality, increased confidence, renewed hope, and moments of joy. Limitations were consistent across studies: need for caregiver assistance during use, time to don and off, limited battery life, cost, and accessibility.
Neuroprostheses
The terminology neuroprosthesis broadly describes a linkage between the nervous system of the user through an input modality, most commonly externally applied or surgically implanted electrodes, to produce a desired action through an output modality, for example, control of computer systems, prosthetic or robotic arms, wheelchairs, or functional electrical stimulation (FES) systems. BCI is a specific type of neuroprosthesis that connects neural signals limited to the central nervous system (spinal cord and brain).
Priorities in pursuing neuroprostheses mirrored functional priorities of recovery of SCI. Among those with tetraplegia, there were high rates of likelihood in adopting technologies to improve upper extremity function and bladder and bowel function. , Those with paraplegia were most interested in using technologies to restore lower body function and bladder and bowel function, corresponding to recovery priorities. Specific bladder and bowel-desired functions included improved independence with management, emptying bladder without catheter, voiding, and restoring continence. ,
Brain computer interfaces
Four studies explored the preferences for the potential use of BCI among PSCI. , , , Participants largely expressed interest in or likelihood of undergoing BCI interventions 57% to 91%, , , with one outlier at 32%. There were clear preferences for wireless technology and noninvasive interventions. Among participants, those with higher LOI (C1-4) and who were less than 10 years from injury were more interested in BCI.
Functional electrical stimulation: surface and implanted electrodes
FES is an increasingly common intervention experienced by PSCI. , Although there was strong agreement in Tedesco Triccas and colleagues that individuals were adequately assessed for and offered FES at the right time, open-ended questions found need for more information, desire for FES at an earlier stage, and lack of opportunity to use. These concerns were echoed across studies, resulting in recommendations from consumers: improved health care provider knowledge, offered to all, and viewed not as an experimental intervention to improve wide use. Consumer-led development of devices would aim to make outputs smaller, less intrusive, and wireless. , , ,
Functional electrical stimulation for bladder and bowel function
Regarding preferences for FES for bladder and bowel function, consumers generally preferred systems that were external and less invasive. , , The Brindley procedure involves surgical implantation of electrodes over the anterior sacral roots to promote micturition, defecation, and erections. It is coupled with posterior sacral rhizotomy (deafferentation) to eliminate detrusor overactivity. A rhizotomy-free Brindley procedure is described as anterior sacral root stimulation coupled with rhizotomy alternative, for example, high-frequency nerve blocks. A third option includes implanted electrodes over the pudendal nerve for afferent stimulation. Among consumers, the rhizotomy-free Brindley procedure was preferred over the pudendal nerve stimulation followed by the Brindley procedure. Despite its invasiveness, the rhizotomy-free Brindley was favored due to perceived improved bladder function compared with pudendal nerve stimulation.
Perceptions of clinical care in inpatient rehabilitation
Studies explored experiences in inpatient rehabilitation, revealing principles that can be applied to participation in clinical trials. Common themes of successful inpatient rehabilitation included the following: expectations of care, respect for individuals, support individual decision-making, information and knowledge, relationships with entire therapeutic team, motivation and encouragement, and support of peers, family, and friends.
Risk and Benefits of Interventions
Drug and stem cell trials
Bahsoun and colleagues explored preferences for participation in research, including a general assessment of what risks were acceptable or not among PSCI. Participants were largely willing to share records (>80%) and donate tissue (>60%). Perhaps surprisingly, most of the respondents were willing to take part in an experimental intervention that had not first been tested on a laboratory animal. When risks were described with prospective trials, approximately 6 in 10 respondents were unlikely to participate if trials included the risk of tumor formation, worsening neurologic function, neurologic infection, or increased neuropathic pain or spasticity, although worsening spasticity was more acceptable than other risks. Anderson and colleagues identified universal factors for participating in clinical trials: possible improvement in function, better understanding of SCI, opportunity to help future PSCI, access to cutting-edge care, and wish to be more independent. Universal barriers included possible decline in function, side effects, and out-of-pocket expenses.
Preferences for participating in clinical trials of drug therapy and stem cell implantation echoed functional priorities of recovery among PSCI. Among those with tetraplegia, hand function over bladder/bowel function was preferred, whereas those with paraplegia prioritized bladder/bowel function over leg function. Older age resulted in statistically significant increased risk tolerance of complications, including those regarded as most severe: worsening neurologic function and cancer. Those with the highest risk tolerance had the lowest expectations for functional recovery. LOI affected risk tolerance: those with tetraplegia were more risk averse, whereas those with paraplegia were more risk tolerant. Injury over time also influenced the balance of risks and benefits, as those with chronic SCI more than 1.5 years since injury, identified the “ripple” effect of risks and benefits, where function and secondary complications can affect social interactions and psychological factors. In addition, those with chronic SCI described more skepticism regarding adverse events and concern regarding loss of function.
Neuroprostheses
Consideration of risk and benefits when deciding to undergo neuroprosthesis interventions consistently centered around invasiveness of procedure, possibility of device failure requiring removal, avoidance of deafferentation, and possibility of intervention excluding a participant from future spinal cord neuroregeneration, that is, “cure.” , , , , , ,
Surgical interventions for upper extremity reconstruction
Among those with tetraplegia, the decision to undergo upper extremity reconstruction, including tendon and nerve transfer surgery, requires careful consideration of risks and benefits. Common perceived benefits of upper extremity reconstruction focused on the expectation that functional gains would be highly valuable, improvement of independence, psychological benefits of increased confidence and self-esteem, and recreation or employment-related goals. These benefits were weighed against risks of loss of independence postoperatively requiring increased care needs, desire to avoid the hospital, which may trigger acute SCI memories, surgical risks, costs, and unwillingness to undergo major life disruption. , , Fig. 4 depicts how risks and benefits of interventions are weighed, with functional recovery priorities imbedded within decisions.
