Factors influencing decisions about neurogenic bladder and bowel surgeries among veterans and civilians with spinal cord injury

Abstract

Objective:

This study investigated factors influencing surgical decision-making (DM) to treat neurogenic bladder and bowel (NBB) dysfunction for veterans and civilians with spinal cord injury (SCI) in the United States (US).

Design:

Semi-structured interviews complemented by survey measures.

Setting:

Community-dwelling participants who received treatment at a major Midwestern US medical system, a nearby Veterans Affairs (VA) facility, and other VA sites around the US.

Participants:

Eighteen participants with SCI who underwent surgeries; completed semi-structured interviews and survey measures.

Interventions:

Not applicable.

Outcomes Measures:

Semi-structured interviews were coded to reflect factors, DM enactment, and outcomes, including surgery satisfaction and quality of life (QOL). Quantitative measures included COMRADE, Ways of Coping Questionnaire, Bladder and Bowel Treatment Inventory, PROMIS Global Health and Cognitive Abilities scales, and SCI-QOL Bladder and Bowel short form.

Results:

Themes identified about factors influencing DM included: recurrent symptoms and complications; balancing dissatisfaction with NBB management against surgery risks; achieving independence and life style adjustments; participant’s driven solutions; support and guidance and trust in doctors; and access and barriers to DM. DM enactment varied across surgeries and individuals, revealing no clear patterns. Most participants were satisfied with the surgery outcomes. Some differences in demographics were observed between veterans and civilians.

Conclusions:

We have attempted to illustrate the process of NBB DM as individuals move from factors to enactment to outcomes. Attending to the complexity of the DM process through careful listening and clear communication will allow clinicians to better assist patients in making surgical decisions about NBB management.

Introduction

Living with spinal cord injury (SCI) requires extensive decision-making (DM) in order to manage the complexities of care. DM is defined as a process of selecting a course of action from a set of alternatives to manage complications associated with SCI.^1–3 Common complications associated with neurogenic bladder and bowel (NBB) include urinary tract infections (UTIs), incontinence, renal function deterioration, and bladder and renal stones; constipation, and hemorrhoids.⁴ Surgeries are one way of addressing a number of NBB complications for which other treatments have failed, yet the decision to move forward with a surgical intervention is often complex and requires consideration of numerous factors. NBB dysfunction remains one of the most life changing and stigmatizing consequences of SCI, affecting the whole person across multiple domains of daily life.^5–7 The effects of NBB management decisions on quality of life (QOL) highlight the importance of understanding the process of DM, its influencing factors and potential outcomes.

Very little research has been conducted in this area for SCI. The findings described herein are part of a study funded by the US Department of Defense designed to address the various factors influencing DM related to NBB among veterans and civilians with SCI. Many factors play a role in DM related to NBB. Individual specific factors include physical, cognitive, psychological and behavioral characteristics such as personal values, cognitions, and beliefs. External factors in turn refer to systems-level structural and social forces that inform individual constructions of experiences, and on-going modulation, shaping social contexts and functioning.⁸ Specifically, access to community resources, income, benefits, and health care systems provide the broad context in which decisions are made.

Among personal factors, decisional involvement by patients in surgical treatment has been mentioned by Hawley et al.⁹ Initiatives to inform persons with SCI and involve them in decisions about their care may influence beliefs of self-efficacy and expectations about treatments received, and their role in DM. Closely related to involvement is the concept of enactment. Entwistle et al.⁸ operationalized decision enactment as involving two broad aspects in the DM process: what factors influence the decisions (i.e. severity of symptoms, need for autonomy, emotional support) and who ultimately influences the final decision (i.e. patient, provider, caregiver, family). Enactment can be complicated by the lack of standards of practice in managing NBB, especially bowel dysfunction, that often requires individualized solutions. In many instances, achieving personal wellbeing through practical solutions guides these decisions in absence of more clear guidelines related to treatments. Coggrave et al.⁵ found that 15% of patients seeking improved autonomy from bowel management needs underwent stoma surgery (ileostomy or colostomy) due to challenges in receiving assistance for bowel care.

In a meta-synthesis of qualitative studies of bladder management following neurologic diseases, Welk et al.¹⁰ found benefits and risks, a sense of control, and the broader social circle having a voice in the decision were all factors in DM. While these studies provide insight into DM for NBB management, they do not provide a full picture of the processual nature of DM, wherein the complex factors, decision enactment, and resultant outcomes unfold through patient narrative data. This article attempts to provide this processual point of view, exploring decision factors and their influence on the DM process including enactment and satisfaction with outcomes in a sample of veterans and civilians with SCI. Data on personal characteristics, surgery type and external factors were used to further describe this process.

Methods

Design

This study utilized a multi-methods design using a purposive sample. This sampling strategy allows for intentional screening of potential participants based on the research question, assuring those included have experienced the issue under investigation. This approach allowed for the intentional selection of 18 participants with SCI (7 civilians and 11 veterans) who underwent surgery for various NBB complications or related emergency conditions. The choice of surgical treatments reflects the intention to examine cases for which no other solutions were deemed satisfactory. Eligibility criteria included being at least one-year post-SCI, 18 years of age or older, having NBB dysfunction, and involvement in a decision related to NBB that lead to a surgical treatment. Recruitment occurred through a major Midwestern hospital and associated clinics, a University-managed SCI patient research registry, a nearby VA center, and assistance from the Paralyzed Veterans of America (PVA). The final sample was a mix of civilian (38.8%) and veteran (61.2%) participants who underwent surgeries from 2000 to 2019.

Qualitative methods included using an in-depth semi-structured interview tool designed to elicit detailed, narrative responses of participants’ decision making, while allowing participant-driven responses to emerge freely. Interviews lasted 45–90 min and were conducted over the phone or in person with an interviewer trained in qualitative data collection. The interviews were audio recorded, transcribed, and then coded using NVivo12.¹¹ The coding scheme targeted decision factors, enactment steps, and resulting outcomes, including QOL reflections.

Quantitative methods involved a number of Patient Reported Measures (PROMs) selected to compliment the narrative data and describe the participants’ psychosocial characteristics (i.e. coping, global health and wellbeing, cognitive abilities, self-efficacy, social support, and decision enactment). Surveys were administered by phone within two weeks of the qualitative interview. We used the Bowel and Bladder Treatment Index (BBTI)⁴ to provide an overview of current NBB management methods and satisfaction. We assessed QOL with the SCI-QOL Bladder and Bowel scales,¹² and SCI-QOL Ability to Participate and Satisfaction with Social Roles and Activities short forms.¹³ The Combined Outcome Measure for Risk Communication and Treatment Decision Making Effectiveness (COMRADE) assessed confidence in DM and satisfaction with communication with providers.¹⁴ PROMIS measures were used to assess global health and cognition.^15,16 A full list of the PROMs used to assess psychosocial factors are shown in Table 1.

Table 1.

Differences in participant characteristics by civilian and veteran status and total sample characteristics.

Characteristics	Civilians (n = 7)	Veterans (n = 11)	Total Sample (n = 18)	P*
Age: Mean (SD)	47.43 (13.28)	59.36 (8.52)	54.72 (11.87)	.033
Time Since Injury: Mean (SD)	21.86 (15.78)	26.73 (16.13)	27.06 (16.02)
Neuro Classification (%)
Incomplete Tetraplegia	28.6	18.2	22.2
Complete Tetraplegia	28.6	27.3	27.8
Incomplete Paraplegia	14.2	9.1	11.1
Complete Paraplegia	28.6	45.5	38.9
Sex (%)				.093
Male	57.1	90.9	77.8
Female	42.9	9.1	22.2
Marital Status (%)				.027
Single	57.2	0	22.2
Married	42.9	63.6	55.6
Divorced	0	27.3	16.7
Widowed	0	9.1	5.6
Education (%)
Bachelors	71.4	54.5	61.1
Associate	0	27.3	16.7
HS/GED	28.6	18.2	22.2
Income (%)
<25K	14.3	18.2	16.7
25–39K	28.6	9.1	16.7
40–59K	28.6	18.2	22.2
60–79K	0	18.2	11.1
>80K	14.3	27.3	22.2
Unknown	14.3	9.1	11.1
Insurance (%)				.011
VA	0	81.8	50.0
Auto No Fault	28.6	0	11.1
Private	14.3	9.1	11.1
Medicare	28.6	9.1	16.7
Medicaid	28.6	0	11.1
PROMIS Global Health				.033
Physical: Mean (SD)	45.10 (10.00)	47.42 (4.24)	46.52 (6.88)
Mental: Mean (SD)	46.36 (6.14)	52.89 (5.60)	50.35 (6.52)
PROMIS Cognitive Abilities	47.01 (9.89)	50.57(6.62)	49.19 (7.97)
MOS Social Support
Tangible	84.82 (17.99)	88.64 (15.26)	87.15 (15.97)
Affectionate	75.00 (15.21)	81.06 (28.16)	78.70 (23.61)
Positive Social Interactions	61.90 (19.16)	79.55 (25.92)	72.69 (24.56)
Emotional/Informational	65.63 (18.22)	77.28 (21.52)	72.75 (20.58)
SCI-QOL Bowel Management.	52.16 (6.17)	48.33 (6.29)	50.07 (6.76)	.004
SCI-QOL Bladder Management.	47.13 (6.63)	48.67 (6.75)	48.07 (6.55)
SCI-QOL Bladder Complications	48.49 (6.96)	46.00 (6.98)	46.97 (6.88)
SCI-QOL Ability Participate	43.39 (3.63)	52.66 (6.62)	48.40 (7.22)
In Social Activities
WOC
Seeking Social Support	30.16 (19.73)	35.86 (25.50)	33.64 (22.98)
Escape Avoidance	7.14 (6.88)	17.43 (12.89)	13.43 (11.83)	.071
Positive Reappraisal	30.61 (16.00)	28.57 (17.04)	29.37 (16.19)
Accept Responsibility	16.67 (13.61)	20.45 (23.08)	18.98 (19.56)
Planful Problem Solving	22.76 (6.27)	26.67 (12.74)	25.15 (10.64)
Confrontive Coping	10.47 (8.26)	11.82 (9.11)	11.30 (8.57)
Distancing	18.09 (3.25)	18.78 (10.57)	18.52 (8.34)
Self-Control	15.24 (13.03)	26.97 (14.02)	22.41 (14.50)	.095
Moorong Self-Efficacy
Daily Activities	46.57 (6.37)	48.82 (9.27)	47.94 (8.14)
Social Functioning	41.29 (2.14)	41.36 (5.75)	41.33 (4.59)
Total Score	87.86 (8.05)	90.18 (13.57)	89.28 (11.51)
COMRADE
Satisfaction w/Communication	73.93 (28.35)	76.59 (13.15)	75.56 (19.68)
Confidence in Decision	72.50 (31.39)	78.86 (17.44)	76.39 (23.17)
BBTI Satisfaction w/Bowel Management				.048
Very Dissatisfied	14.3%	0.0%	5.6%
Dissatisfied	28.6%	0.0%	11.1%
Satisfied	57.1%	54.5%	55.6%
Very Satisfied	0.0%	45.5%	27.8%
BBTI Satisfaction w/Bladder Management
Very Dissatisfied	0.0%	0.0%	0.0%
Dissatisfied	0.0%	9.1%	5.6%
Satisfied	57.1%	54.5%	55.6%
Very Satisfied	42.9%	36.4%	38.9%

Note: p values are included for differences that approached significance, P < .10 showing trends in the data; statistical significance was set at P < .05, and these p values are in bold.

Analyses

Qualitative data was analyzed using content analysis to identify individual topics, shared themes, and broad patterns in the interview transcripts.^17,18 Topics were identified using a deductive coding scheme designed to identify text that addressed the type of surgery, factors used in the decision to seek and carry through with surgery, the participants’ steps in enacting their decision, and the resulting outcomes of their decision to have surgery. Data were assembled into a matrix, which displayed the demographics, surgery type, factors, enactment steps, and outcomes for each participant, including example quotes.

Each participant’s narrative was independently rated by three investigators to determine the style of DM enactment used in each case. These fell into three broad categories: (1) participant-led decisions (when active engagement and leadership for the final decision stemmed primarily from the participant); (2) shared DM (when decisions were based on clear collaborative relationships of equitable roles); or (3) doctor-led decisions (when the participant left the decision primarily to their doctor). Each decision was placed exclusively into one of these three categories.

Using the data matrix, pile sorting was used to generate themes that represented patterned responses across multiple participants that characterized the factors, enactments, and outcomes of surgical DM. Quotes from participants were used to illustrate these themes and preserve individual voices on these issues. Surgeries were roughly grouped by purpose and similar procedural steps for comparison purposes. These surgeries appear in Table 2. Throughout all qualitative analysis steps, authors discussed any discrepancies until consensus was reached.¹⁹

Table 2.

Categories of factors referenced by each participants as influencing decisions related to NBB surgery^a.

Surgery Type and Participant’s Characteristics: age, sex and neuro classification, year of interview and surgery	Complications Symptoms	Prior Methods of Management	Impact on QOL	Barriers/Access to Resources	Treatment Approaches	Social Support	Doctor Factors	Participant Skills, Traits
Bladder Augmentation 40, female, incomplete Paraplegia Interviewed: 2018 Surgery: 2018	UTIs, kidney reflux	IC			Medications did not work		Trust
SP Catheter 68, female, complete Paraplegia Interviewed: 2018 Surgery: 2017	Leakage, bed sores	IC	Burden to others	Caregiver	Unsuccessful method of management	SCI family member	Trust	Self-awareness
SP Catheter 61, male, complete Tetraplegia Interviewed: 2019 Surgery: 2000	UTIs, autonomic dysreflexia	Indwelling Foley	Changes in lifestyle	VA insurance	Unsuccessful method of management	Mother, neighbor	Trust	Self-directed
SP Catheter 49, male, complete Tetraplegia Interviewed: 2019 Surgery: 2015	Leakage, urine incontinence	Indwelling Foley	Changes in lifestyle Autonomy	Caregiver Limited hand function	Unsuccessful method of management	Wife	Trust
Mitrofanoff Valve 48, male, incomplete Tetraplegia Interviewed: 2018 Surgery: 2017	UTIs, spasticity	Indwelling Foley, SP, IC	Changes in lifestyle	Caregiver	Unsuccessful methods of management	Husband, others	Trust	Nursing background, did own research
Modified Indiana Pouch/stoma 56, female, complete Tetraplegia Interviewed: 2019 Surgery: 2013	UTIs, autonomic dysreflexia	Tapping, indwelling catheter	Changes in lifestyle Autonomy	Caregiver Limited hand function	Unsuccessful methods of management	Sister, peers, friends	Trust	Inquisitive, resourceful, self-directed
Ileo Vesicostomy 41, male, incomplete Tetraplegia Interviewed: 2018 Surgery: Not available	UTIs	IC	Changes in lifestyle	Insurance coverage	Unsuccessful method of management	Nurse, peers, family	Trust	Driven style self-directed
Ileal Conduit 71, male, incomplete paraplegia Interviewed: 2019 Surgery: 2002	Unable to void, UTIs, bladder pressure	IC	Changes in lifestyle	VA insurance	Medications did not work	Wife	Trust	Seeks information, free spirit
Ileal Conduit 55, male, incomplete tetraplegia Interviewed: 2019 Surgery: 2019	UTIs, renal failure	IC	Changes in lifestyle	Caregiver	Medications did not work	Wife	Trust	Positive disposition, spiritual
Nephrectomy 51, male, incomplete Tetraplegia Interviewed: 2019 Surgery: 2014	UTIs, leakage, kidney stones	IC	Urine odor	VA insurance	Medications did not work	Wife	Trust
Hemorrhoidectomy 61, male, complete, tetraplegia Interviewed: 2018 Surgery: 2018	Bleeding, pain, soreness	Digital stimulation	Changes in lifestyle		Unsuccessful minor surgeries	Wife	Trust	Self-awareness
Hemorrhoidectomy 48, male, complete paraplegia Interviewed: 2019 Surgery: 2019	Bleeding, autonomic dysreflexia	Digital stimulation		Insurance coverage	Unsuccessful method of management		Trust
Colostomy 44, male, complete paraplegia Interviewed: 2018 Surgery: 2012	Hemorrhoids, autonomic dysreflexia, diarrhea constipation	Digital stimulation		Cost of surgery	Medications did not work	Family	Trust
Colostomy 67, male, complete paraplegia Interviewed: 2019 Surgery: 2019	Bowel incontinence, wounds	Digital stimulation	Changes in lifestyle, intimacy		Unsuccessful method of management	Friends	Trust	Self-directed
Colostomy 68, male complete paraplegia Interviewed: 2019 Surgery: 2013	Bowel incontinence, wounds	Digital stimulation, laxatives, diet	Changes in lifestyle	Insurance coverage	Unsuccessful method of management	Family. friends	Trust	Religious, strong willed
Colostomy, Ileostomy 57, male, complete paraplegia Interviewed: 2019 Surgery: 2012	Abdominal pain, wounds	Digital stimulation	Body image, intimacy	VA insurance	Unsuccessful method of management		Trust
Ileostomy 50, male, complete paraplegia Interviewed: 2019 Surgery: 2016	Ruptured bowel	Digital stimulation, suppositories enemas	Changes in lifestyle	Caregiver	Unsuccessful methods of management	Sister, family	Trust	Self-directed
Ileostomy, Colostomy 70, male, complete paraplegia Interviewed: 2019 Surgery: 2011	Incontinence, bowel accidents, wounds	Digital stimulation	Body image	Caregiver, nurse	Unsuccessful Method of management	Wife, nurse, caregiver	Trust

^aBlank cells reflect lack of information provided by the participant about this category of factors.

Statistical analyses were conducted to describe all quantitative variables. To test for sample differences and relationships among variables, Chi square, t-tests, ANOVAs, and Pearson correlations were computed, depending on the nature of the variables involved. Significance was set at P < .05 to detect differences. While significance testing was conducted, analyses were limited by the small sample size, and the purpose of this qualitative analysis was primarily to highlight trends in the data, which could help us contextualize thematic findings, and not to test established hypotheses. Throughout both qualitative and statistical analyses, differences between civilians and veterans were investigated.

Results

Demographic, neurological, and surgery characteristics

Table 1 shows key demographic and neurological attributes of the participants, along with scores on the study’s psychosocial measures. Our exploratory analyses suggested some potentially important differences in spite of the small sample sizes. Veterans were older (P < .033); more likely to be married or divorced (P < .027); and receiving VA insurance (P < .011). Civilians reported lower mental global health as measured by the PROMIS (P < .033); greater dissatisfaction with their bowel management (P < .048); and less satisfaction with their ability to participate in social activities (P < .004). Other trends in the data are indicated in Table 1.

Half of bladder surgeries performed involved stomas or suprapubic tube insertion, followed by ileal conduits (30%). For bowel, colostomy (42.8%) followed by ileostomy (28.5%) and hemorrhoidectomy (28.5%) were the main surgeries. Bladder surgeries were performed mostly on those with incomplete tetraplegia (40%), followed by those with complete tetraplegia (30%) while bowel surgeries were performed mainly on those with complete paraplegia (87.5% compared to only 10% for those with bladder surgeries, P < .01). There were no differences in terms of bladder and bowel surgeries and participants’ psychosocial characteristics based on their survey scores, with the exception of their cognitive abilities. Those who underwent bowel surgeries reported higher cognitive abilities than did those with bladder surgeries: 53.76 (SD 7.26) versus 46.54 (SD 6.62); P < .040.

Factors influencing surgery decisions

Table 2 illustrates the factors influencing DM related to NBB surgeries for each participant. Across eight broad categories of factors, all participants endorsed increased frequency and/or severity of symptoms, and trust in their doctor. Testimonials ranged from clear satisfaction to great disappointment in how their providers communicated. Other factors included problems with current methods of bladder or bowel management (94.4%), and ineffective treatments, including issues with medications and supplies such as catheters (94.4%).

Recurrent UTIs, incontinence, wounds, renal complications, and ineffective bladder medications were the major reasons given for seeking bladder surgeries, and intermittent catheterization was the most common management method prior to surgery. Bleeding hemorrhoids, bowel incontinence, wounds, and ineffective management methods were the primary reasons given for seeking bowel surgeries, with digital stimulation the most common pre-surgery management method used.

A number of factors influenced both bladder and bowel DM without being explicitly tied to either. Independent lifestyle, autonomy and body image concerns were all important factors, with some reference to possible impact (positive or negative) on QOL as a factor in DM for 13 of the participants (72.2%). Access to or barriers to resources enabling or limiting DM was mentioned by 12 (66.6%) participants. Emotional and social support, coming from family members, peers and friends, along with providers, was a DM factor for 14 (77.7%) participants. Eleven participants (61.1%) espoused self-awareness, self-direction, spiritual strength, and/or high motivation to find their own solutions for problems, directly informing DM.

In summary, surgery decisions were shown to be influenced by the perceived risk of more serious complications, the benefits of having a more effective or easier method of management, need for independence, physical and financial access to hospitals and experienced doctors, concerns about body image and sexuality, embarrassment due to accidents, and past experiences with surgeries. The interplay of these factors contributed to the potential enactment and outcomes of a surgical decision.

Common themes illustrating factors in DM

Table 3 illustrates six related themes that contextualizing the experiences of the above factors influencing NBB surgery DM. In each case, examples from the narrative text are provided, endorsing a multitude of factors within these themes. Themes include: (1) recurrent symptoms and complications; (2) balancing dissatisfaction with NBB management/treatment against surgery risk; (3) achieving independence, avoiding dependence, and life style adjustments; (4) behavior- or personality-driven solutions (i.e. doing their own research, talking to others, seeking guidance from professionals); (5) support and guidance, including communication with providers; and (6) access to resources and/or barriers influencing DM (i.e. appropriate healthcare facilities, knowledgeable providers, and caregivers help).

Table 3.

Themes reflected in narratives of participants related to factors influencing NBB surgery.

Themes	Factors Cited Leading to Surgery	Narrative Quotes Illustrating DM Process
1. Recurrent symptoms and complications	Decision about suprapubic surgery Cited factors: bladder incontinence, wounds, did not have knowledge about contemporary methods, life threatening. Decision about hemorrhoidectomy Cited factors: hemorrhoids, bleedings, VA let him travel to where he could stay in-patient longer to recover, prior surgeries were not successful, concerns about re-injuring with digital stimulation.	The decision was made because my spinal cord injury resulted in – after all these years – huge, um, bedsores, called decubiti wounds. I didn’t realize how bad it was. I let it go because I was just- I went to see a wound care doctor; he was treating them. Well, it turns out he wasn’t treating them enough. I ended up going into the hospital septic and very, very sick. I mean I was on – close to death by that time. (68-year-old civilian woman with complete paraplegia) So basically I think I would be dead if it wasn’t for the VA. I’ll say, Okay, I am not going to do a program, so this way you are not getting the digital stimulation … knowing that you will feel miserable. So, I’ll say well, it’s worth it that maybe the hemorrhoids will start subside some. Do everything you can before you get to go and get the surgery. (48-year-old male veteran with complete paraplegia)
2. Balancing dissatisfaction with NBB management/treatment against surgery risk	Ileovesicostomy Cited factors: recurrent UTIs leading to kidney failure, ineffective medications, reluctant about surgery at first.	My urologist told me I better start checking with my relatives for a kidney transplant … we tried all medications … I don’t like surgeries … I was being catheterized … maybe four times a day. And … kept getting UTIs … he (doctor) invented the procedure … It’s like there is no second opinion …  (41-year-old civilian male with incomplete tetraplegia)
3. Achieving independence, avoiding dependence, and life style adjustments	Colostomy Cited factors: wounds, discomfort with wife caretaking for bowel management Mitrofanoff catheterizable channel Cited factors: recurrent UTIs, learned about Mitrofanoff from OT during inpatient rehabilitation, bad communication with doctor.	I could not put my wife nor myself through that anymore, and quite frankly, uh, it was more, uh, the decision I made for my wife’s part, and not mine. My priority was my wife. Second … was trying to get my wound to heal. And then, third would be embarrassment on my part. (68-year-old male veteran with complete paraplegia) I can wear pretty much whatever I want to and nobody knows that, I have this little stoma in my belly that that’s how I drain my bladder. And I like it a lot better. (49-year-old civilian woman with incomplete tetraplegia) Doctor did not think a SP was appropriate “he did not believe it was safe for women”. Participant did not want to have urine bag –had a Foley in place- doctor said to just “deal with it”; she was upset by his comments
4. Participant behavior- or personality-driven solutions	Suprapubic catheter Cited factors: urinary retention, spastic bladder, bladder infections, decisive personality, talked to others, trust in doctor.	The walls were getting thicker … and the bladder was not emptying it completely … I kept getting these bladder infections … that’s to find out why I went and did some research to find out what I needed to do. (61-year-old male veteran with complete tetraplegia) Participant went to non-VA facility; he “knew” the VA wasn’t going to do it, talked to friend’s doctor who agreed about surgery, talked to neighbor with SCI, trust in doctor’s skills and knowledge
5. Support and guidance, including communication with providers	Colostomy Cited factors: life threatening situation with autonomic dysreflexia (AD), bad hemorrhoids, high blood pressure, pain medications caused constipation, dehydrated. Miscommunications with doctors. Modified Indiana pouch Cited factors: anxiety about cathing, could not catheterize due to stoma bulge, trust and emotional support from doctor and caregivers.	… I was literally ‘gonna’ die so they had to go in and they gave me a bag (Surgeon first refused colostomy but agreed after BP episode). They (doctors) should’ve given me a warning about all that let alone like, they should tell people … (44-year-old civilian male with complete paraplegia) Participant not pleased with surgery outcomes, worried about mucus drainage, blockages, felt uninformed going into this surgery, forced into agreeing with decision, angry with doctor.  … I could not get the catheter in … so my bladder gets full … my body reacts with AD. I was very apprehensive to do that (surgery) initially. My doctor was very concerned about me … she was willing to do whatever needed … I feel more comfortable about reaching out to help through the VA doctors. I was very apprehensive to do that initially, um, um, when I was starting to have trouble in 2013. (56-year-old woman, veteran with complete tetraplegia)
6. Access to resources and barriers influencing DM	Colostomy/ileostomy Cited factors: complications leading to surgery, bowel accidents, bladder incontinence, reluctant about caregiver help, shame and guilt; burden to wife; informed by nurse about surgeries. Emergency ileostomy/temporary colostomy Cited factors: life threatening complications from surgery, pain, wounds, lack of choice due to severity of condition, lack of caregiver help.	I was concerned that I’d have feces around the sores and as a result, cause further infection … I’d sleep in the urine for a couple of hours (to) avoid a caregiver. It was always embarrassing, you know, having suppository and then … having someone clean me up afterwards. (70-year-old male veteran with complete paraplegia) Participant slept in urine at night not to disturb spouse; did not like being helped with bowel program; ostomy nurse provided support and information. I was sitting there hollering in pain … they rushed me into emergency surgery to find out that colonoscopy (colostomy) had collapsed or not working, which force them to do a permanent ileostomy. Participant developed bad sacral wounds; had flap surgery and temporary colostomy; was supposed to be in bed rest for 6 months but lives alone; could not do it.

Recurrent symptoms and complications were mentioned by every participant as factors critical in DM. Participants recalled the lengthy efforts to overcome or manage stubborn NBB-related symptoms, including the ineffective approaches leading to surgical options, suggestive by theme balancing dissatisfaction with NBB management/treatment against surgery risk. Evaluating the pros and cons of surgery was a challenge. Most relied on trust in doctors, emotional support and clear communication. Reluctance or fear of surgical procedures led many to delay the surgical decision, only accepting surgery as a last resort. In numerous instances, these decisions were associated with last minute serious complications and life threatening situations. Mixed feelings of fear, anger, and gratitude indicate the emotions of participants in these life-threatening decisions.

Achieving independence, avoiding dependence, and lifestyle adjustments guided many surgery decisions. These participants accepted surgical risks for the possibility of achieving a better sense of control over their lives and greater social participation. These decisions were often associated with participants’ engagement and involvement in the DM process resulting in satisfactory outcomes. Powerful emotions such as being a burden to others, feelings of guilt, embarrassment, and shame appeared in this theme. An example of these factors can be found for colostomy under row 3 of Table 3, where the participant clearly stated that the burden on his wife and his self-image guided his DM. Addressing uncertainty related to treatment effectiveness explain participant behavior- or personality-driven solutions towards DM. The same sorts of psychosocial characteristics that led to awareness of the impact of NBB on others motivated some to take action. These characteristics influenced participants’ self-confidence in DM through gathering information, being the kind of people who decide things for themselves, and seeking out support in their DM process.

Support and guidance, including communication with providers was a clear theme that illustrated the broad range of social experiences that influenced DM. Chief among these was trust in providers’ recommendations and guidance, their willingness to share information and degree of emotional support towards their patients. Individual experiences varied widely, with some experiencing effective, comfortable interactions with their doctors while others feeling angry about or neglected by their lack of clear communication. Emotional support for DM from family and caregivers was also frequently expressed. This social support feeds into the access to resources and barriers influencing DM, in that lack of caregiver assistance couple with limited physical functioning was a critical barrier for many that made the choice of surgery an essential step. For others, the idea of needing caregiving was associated with embarrassment, dependence, and lack of privacy, linking back to the earlier theme of independence. The impact of differences in insurance benefits varied across the sample. Some veterans, for example, sought care outside the VA healthcare system when met with resistance; others were very happy with services and surgery benefits coverage received from the VA.

Enactment of surgery decisions

The actual acting out of NBB-related decisions takes into consideration the process described above. Table 4 illustrates the three broad DM enactment styles observed in the sample. For DM regarding bladder surgeries, 40% were participant-led; 40% involved shared DM; and 20% doctor-led. For bowel surgeries, 50% were participant-led; 37.5% were doctor led and 12.5% were shared DM. Across all surgery cases, 44.6% of DM was participant led with 27.7% being shared and 27.7%, doctor lead.

Table 4.

Examples of categories of neurogenic bladder and bowel decision making enactment preferences after SCI.

Category of DM Enactment for Bladder Surgery	Process of Decision Enactment: Factors Leading to Acting	Narrative Quotes
Participant-led decision: SP catheter	Incontinence increased, developed sores, recurrent UTIs. Doctor suggested SP catheter instead to help with incontinence and keep wounds dry. Participant was reluctant about surgery but considered problems and doctor’s recommendation making the final decision to undergo surgery; she expresses guilt about not doing it sooner	She (doctor) suggested getting a SP. We fought for a while then I thought ok … and it really helped. I’m dealing with the feeling that I caused part of it myself by not listening to my head, or whatever you listen to that tells you to go take care of it.(68-year-old woman with complete paraplegia)
Shared Decision-Making: Ileal conduit	Unable to void; could not catheterize due to intense spasms; urine was backing up to kidneys; was not interested in SP catheter as he likes to swim. Participant talked to doctor, consider all options, did research, leveraged experience and knowledge as Army medic in making decision about surgery.	I don’t leave anything to chance. I’m like, “Okay, let’s think this thing out.” It was like how I chose an ileal conduit … I look at all the various forms of surgery and things they could do, uh, and finally came down to the point where I asked the doctor. I say, “Okay, which one do you never have to go back and touch? Which one do you never have any trouble with? Which one do you not have to mess up with?” Oh, he said, “That’s an ileal conduit.” And I spent some time researching it and, you know, apparently it’s right. (71-year-old male with incomplete paraplegia)
Doctor-led Decision: Bladder augmentation	Recurrent UTIs with renal complications, kidney reflux; incontinence; increased need for catheterizations; ineffective medications. Participant had complete trust in doctor; good insurance coverage.	I mean it’s really simple. If you have a serious condition and your doctor tells you, you need surgery and, you know, you’ve tried other avenue, all other, I would think that most people should have a surgery, right? There was really nothing else that went into the decision-making process. Things were not clearing up. The medication was not working (40-year-old woman with incomplete paraplegia).
Participant-led Decision: Hemorrhoidectomy	Bleeding hemorrhoids; takes pain medication; difficult bowel program; prior hemorrhoids surgeries (banding did not work); busy life style; considered persistent symptoms; trust in doctor; wife support; good insurance coverage.	… I made the decision, because I know I've been having – bleeding too many days, too many weeks, or whatever. My wife just saying, okay you've made the decision. Let’s go. (61-year-old male with complete tetraplegia)
Shared Decision-Making: Colostomy	Wounds and discomfort with caretaking for bowel management; inconsistent bowel regiment led to accidents and aggravation of wounds; spouse managed bowel regimen; long history of surgeries so was not too concerned about colostomy; talked to a couple of doctors about their opinions; wife support.	When I came home from the hospital, we had to put pads down, and I kept defecating into the pad, my wife would have to clean me and so, one thing led to another, and finally, um, the – the doctor said, “Well, would you want us to do a colostomy?” And it was the third time it had been suggested to me, and I looked at my wife, and I looked at the doctor, and I said, “Let's do it, and do it soon.” (68-year-old with complete paraplegia)
Doctor-led Decision: Emergency ileostomy	Rupture bowel; septic on arrival at hospital; non-responsive after X-Ray in ER; was not able to discuss the surgery with doctor until 2–3 days after surgery. Participant agreed with doctor but felt had no choice in order to survive.	I was going septic … had he not performed (surgery) right away I would have died … he saved my life. (50-year-old male with complete paraplegia)

Shared DM (SDM) is a process of matching choices to patients’ values and preferences with the goal of promoting individual autonomy.²⁰ SDM was used mostly by veterans (36.36%) compared to civilians (14.28%). Our examples in Table 4 show it being used in situations requiring more complex decisions (e.g. ileal conduit, nephrectomy, ileovesicostomy and Modified Indiana Pouch bladder surgeries) as well as those requiring trust with no better options in view of persistent problems (e.g. colostomy).

The degree to which decisions were participant-led or shared decreased as the complexity or risk of the considered surgery increased. For example, DM enactment was less complex and more participant-led for straightforward bladder surgeries such as insertion of suprapubic catheters, hemorrhoidectomies, and some colostomies. With increased surgery complexity, came the need for greater reliance on medical expertise, where DM enactment required greater doctor involvement, either through shared DM or through doctors-led DM, in which participants followed doctors’ recommendations with little or no questioning. Trust in the doctor became a critical factor for at least one other participant, who had a bladder augmentation surgery and who commented, “my doctor was very concerned about me … she was willing to do whatever was needed”. Finally, the most complex surgical decisions, with more severe systemic issues, possibly related to survival, were all doctor-led (see last row of Table 4).

DM enactment was not clearly associated with demographic and injury characteristics with exception of work status (P < .04). Participant-led DM was more likely to be made by retired participants (85.7%) of which 54.5% were veterans. There were no statistically significant associations between most survey measures and DM enactment. Trends were observed: those who used SDM were more likely to have higher self-efficacy scores (P < .10) but less likely to use planful problem solving as a coping strategy (P < .09).

Outcomes from surgery decisions

Table 5 describes narratives reflecting level of satisfaction with the surgical decisions, and ratings about these decisions and overall QOL (both rated on a 10-point scale). Most participants were satisfied with their surgeries. Satisfaction ratings for bladder surgeries were high averaging 8.75. All of those who had SP catheter surgery were happy with the results. Two female participants reported high satisfaction with the Mitrofanoff and Modified Indiana pouch procedures, which provided independence, decreased the number of UTIs and restored dignity and self-confidence. Other factors considered included body image and ease of catheterization, as well as personal and spiritual growth.

Table 5.

Satisfaction with neurogenic bladder and bowel surgery decisions and overall quality of life ratings.^a

Type of Surgery	Narrative Quotes about Satisfaction	Decision Satisfaction Ratings	QOL Ratings
Suprapubic catheters	Positive experience with surgery, doctors, and the SP catheter itself.
	… got the super pubic, and that really helped … well, you know how every now and then catheters get clogged up … but in general very good results. I’ve had a couple of infections, but I was always having infections.	8	7
	Everything’s working fine, except for the infections I’ve gotten fewer the last couple years.	8	9
	I knew it was going to get me about a five-hour independence. I … strongly recommend it to anyone who would ask.	9	9
Ileovesicostomy Ileal conduits	Mixed outcomes: 2 were pleased with outcomes; 1 experienced surgical complications
	I had – I had the choice between getting the surgery and my kidneys most likely failing in four or five years. I elected to have the surgery.	7	6
	The only regret I have with my bladder is I didn't do it 20 years’ sooner.	9	7
	I got sick the following day (after surgery), I- I just didn’t feel good, I couldn’t breathe. I was delirious. I called my wife, and I said, “Hey, I don’t feel good,” I said, “Why don't you just take me back to the emergency room at the Mayo Clinic”. And sure enough, I went back in, and, uh, they re-admitted me for about another week and uh, they put another catheter back in me. (Participant did not want to have the surgery but felt he had no choice but to agree as doctors explained that he need the surgery to avoid future UTIs which could affect his new kidney transplant).	8	7
Mitrofanoff catheterizable channel Modified Indiana pouch	Positive experiences with both procedures; very happy with results
	I can wear pretty much whatever I want to and nobody knows … that I have this little stoma in my belly that that’s how I drain my bladder. And I like it a lot better. Unless, there was something miraculous that could restore my bladder function … I think that having this stoma is so much better than … doing the intermittent urethral catheterization or having the indwelling Foley or the suprapubic catheter. Because of, you know, the fewer – much fewer – basically, no UTIs and not having it be visible to the outside world.	10	7
	I have gone through amazing growth … more faith, more confidence in myself, in my decision making … I would have done it sooner … it’s the apprehension and the lack of professionals … that … had experience with Indiana pouch.	8.5	10
Bladder augmentation	Problem mostly resolved, takes medication for lingering issues. Satisfied with results so far.
	Well, God, I would hope and pray that I don’t have to do that again. But, yeah, if I was in an urgent situation I would.	10	9
	Not, not that I didn’t want the surgery. I mean no one gets excited about having surgery whether you have a spinal cord injury or not, but, you know, there are times in your life where you have to do something hard to have a better quality of life, right?
Nephrectomy	Very positive outcome, UTIs greatly reduced, no noticeable problems only having 1 kidney, high contribution to QOL
	It actually turned out better than I expected. Like I said, the UTIs are way down. I haven’t had any, haven't noticed any issues as far as, you know, I don’t know what issues you would have with, only have one kidney but seems fine. If I knew, shoot, if I had known earlier I would have had it done earlier	9.5	9
Colostomies	Mixed results- 1 participant very unhappy; 1 somewhat happy and 2 happy with surgery results.
	They should’ve given me a warning about all that, let alone like, they should tell people …  (worried about mucus drainage, blockages) … I wished you (they) would ‘ve told me all this before you (they) told me to do it. I would’ve never done it … (they) should be more specific.	0	3
	I’m not absolutely 100% happy (with colostomy), but- I’m happier than I would be, I think, the other way.	8	8.5
	Well, I think it has simplified my life … made it much easier on my wife … and it enabled me to heal.	9	7
Ileostomies	Mixed Results – both participants expressed dismay about lack of choice and unhappiness about it.
	There really wasn’t any decision. I didn’t really have a choice to say no to any of it. (emergency ileostomy) I would have never opted for this (ileostomy) if I had a choice, but even if I’d been awake, there really wasn’t a choice.	5	4
	I heard ‘reversible’ and I’m thinking okay, cool, I can live with a scar … There really wasn’t any decision. I didn’t really have a choice to say no to any of it.
	I’m extremely happy, yep, extremely happy with care and I have been very happy with the support I’ve gotten from the VA. I've had it (colostomy) for almost four years now, and it is the best thing since sliced bread.	9	9
	Participant had both ileostomy and felt colostomy improved his lifestyle, able to manage his bowels, but is frustrated about unexplained anal discharge.	9.5	7.5
Hemorrhoidectomies	Positive impact on quality of life but concerns about lasting results and long duration of healing time
	It's just a matter when. Like he says, it can be a year, it can be a couple of years. Hopefully we did enough this time, it will give you enough time … before you have to um, have the next surgery. I have a period of time and I’ll enjoy that period of time, how long it will ever be to know that I just overall will feel better.	10	9
	Interviewer: Overall are you satisfied with the results of the surgery? Yeah –  … I’d say overall right now everything’s going great. I really like the past two months I haven’t had any issues … changing of my diet and changing frequency of the bowel program, I’m doing it daily now. I also had a hemorrhoidectomy done … That had a lot to do with helping out.	10	9
	Interviewer: So overall you’re satisfied with the way things went? Yeah absolutely

^aNote: Ratings varied from 0 (totally dissatisfied) to 10 (totally satisfied).

Satisfaction ratings for bowel were slightly lower, averaging 7.50. Two participants expressed dissatisfaction related to lack of choice, emergency situations, and lack of information on what to expect from the surgery. Another felt there was no choice nor decision but seemed satisfied with results. Both colostomies and ileostomies received mixed reviews with dissatisfaction with respect to lack of informed choices and unexpected complications. Participants felt they had no choice on the matter. In contrast, two participants with colostomies were happy with results, citing healing from wounds and improved lifestyle and independence as benefits. Among those with ileostomies, satisfaction varied. While the first person rated satisfaction with this decision as a 5, the second although unhappy and experiencing feelings of negative body image, rated the decision outcome a 9. Participants who underwent hemorrhoidectomies were satisfied, preferring surgeries to the symptoms they had experienced previously.

Overall QOL ratings were lower (7.65) than ratings of satisfaction with decisions (8.75). Decision outcomes about SP surgeries and overall QOL were rated very similarly (averaging 8.50 versus 8.16) as were decision regarding bladder augmentation and nephrectomy surgeries and related QOL ratings (9.75; 9). Greater disparity in satisfaction ratings were noted for those who underwent ileal conduits, Mitrofanoff catheterizable channel and Indiana pouch procedures. These were rated higher (8.50) than respective QOL ratings (6.80). For decisions about colostomies, satisfaction ratings averaged 5.50 while QOL ratings averaged 5.62. Those with ileostomies rated satisfaction with decisions higher (9.75) and QOL (8.25) accordingly. Those who had hemorrhoidectomies reported the highest satisfaction, with both providing ratings of 10 for satisfaction and 9 for QOL.

Civilians rated their satisfaction with bowel surgeries lower than veterans (6.33; 8.33) QOL ratings were lower but similar for civilians and veterans: bladder (7.25; 7.91) and bowel (7; 7.2). With respect to satisfaction with methods of bowel management, 42.9% of civilians were dissatisfied with their management while no veterans were dissatisfied. This difference was significant, P < .04.

Discussion

Decisions about NBB after SCI can be particularly complex, involving a web of diagnostic options and treatment uncertainties, patients’ health characteristics, preferences and values, and costs. In this study, we examined the factors influencing DM to address NBB dysfunction for those with SCI who had NBB-related surgeries. Unlike many daily decisions, these decisions have substantial consequences for one’s QOL and involve important uncertainties and trade-offs. We also assessed how these factors influenced the DM enactment, and the outcomes of surgeries, both satisfaction with the decisions and overall QOL. Six identified themes suggested common patterns across participants. In many cases, they focused on problems (recurring complications) without clear solutions (evidence-based treatments).

Many persons with SCI make decisions to have surgeries to improve NBB dysfunction, leveraging their sense of autonomy and QOL concerns, balancing the costs and benefits associated with all options. As seen by the narratives depicted here, study participants often considered their problems (symptoms, complications, ineffective methods of management and treatments) and potential solutions (surgeries) in relation to their personal goals and objectives (i.e. survivability, independence, participation). Throughout these 18 cases, surgery was seen as the best option requiring careful consideration of consequences and considerable trust in doctors and providers. For example, and similar to Boucher et al.²¹, participants in our study chose colostomies for different reasons ranging from solving bowel care problems to reducing reliance on caregivers and improving independence. Overall, the level of participants’ decisional involvement varied based on their degree of comfort with their own skills, level of trust on providers, support and communication with doctors, and relative importance of family involvement.

The few studies that have explicitly explored the complexities of NBB management DM in SCI have found that the best outcomes occurred when patient engagement in the process was high, as was providers’ willingness to explore and incorporate patients’ concerns in treatment recommendations. Locatelli et al.²² found that the benefits of shared DM (between patient and provider) produced more-effective solutions to health problems, while promoting both patient autonomy and adherence to management plans. Engkasan et al.²³ found a paternalistic model (doctor-led) is prevalent in DM for NBB management after SCI, wherein patients felt their autonomy in DM was overridden.

Our findings concur with these findings in that dissatisfaction occurred mostly due to unexpected negative outcomes, lack of trust or clear communications with providers. In our study, decisions on the more complex surgeries such as ileal conduits, nephrectomy, involving greater risks required greater trust in doctors and were primarily enacted by the doctor or involved a shared decision making (SDM) process. Hence, the value of clear lines of communication to establish successful DM and satisfaction with outcomes. In absence of such, participants felt neglected and angry about outcomes. Overall, however, most participants viewed their surgery outcomes with high satisfaction and QOL post-surgery, except in extreme circumstances (i.e. an emergency or urgent surgery), suggesting a negative psychological outcome as patients lost control in the DM process. QOL ratings were in general lower than surgery decision satisfaction ratings, possibly attributed to the many other aspects of one’s life that are affected by these decisions, such as relationships, employment, etc. To this point, ileal conduit procedures received high ratings of DM satisfaction, suggesting that participants were happy with outcomes of their care while impact on QOL was reflected by slightly lower ratings.

Not surprisingly due to the small sample size, only a few differences were observed among participants and surgeries. Civilians tended to report lower mental health and greater dissatisfaction overall with bowel management than did veterans. Civilians were less able to participate in social activities, which adversely affected their QOL. Interestingly, those who underwent bowel surgeries tended to report higher cognitive abilities than did those who underwent bladder surgeries. These differences deserve further exploration. It is possible that bowel problems require creative solutions relying on participants’ cognitive abilities and problem-solving skills (trend observed) since bowel care is less standardized and mostly tailored to one’s needs.

It is unclear why for veterans there was a smaller impact on QOL and mental health related to bowel management, though this may be related to the older age and longer times since injury among veterans, which may have helped them to adapt to NBB prior to DM regarding surgeries. Further, the higher rate of marriage among veterans along with the normative social expectations of them may have provided them with more support and resilience. Further, DM enactment was not significantly associated with personal characteristics other than employment status. Retired participants were more likely than others to make their own final decisions. Most retirees were older veterans and thus perhaps exhibited greater sense of direction and self-confidence in accessing the resources needed to enact their decisions.

Herein, we found a tension between the needs of providers and those of participants, thus influencing the DM process and participants’ needs for recognition and autonomy. While participants tended to concur with their doctors’ expert opinions on treatment recommendations, it is interesting to note that these recommendations were at times faced with reluctance, and in some cases, participants sought out advice and guidance from others. Engkasan et al.²² found that persons with SCI with bladder problems had substantial influence on the decision of others with SCI and could, at times, override physicians’ recommendations. We found some support for these findings across themes identified in relation to factors that summarized DM enactment. Taken together, seeking congruence between patient concerns, the opinions of the patient’s social support network, and the clinicians involved seems critical for effective NBB related DM. Adequate time and space in clinical encounters would improve this consensus-building.

Limitations

The narratives of the DM process for surgery following NBB dysfunction in this sample may not be representative of veterans and civilians with SCI more broadly, due to the study’s small sample size and the fact that most study participants were from one geographic area. These DM processes may be particular to the type of surgeries described here in terms of common practices at healthcare facilities, socioeconomic structures, or geography. There is also the possibility of bias in the selection of quotes or categorizations of DM enactment styles based on the narrative provided. Individual interviews can only present part of a person’s larger life narrative. Also, quantitative comparisons were based on a relatively small sample size and need to be interpreted with caution. These analyses were conducted to highlight trends in the data rather than to draw hypotheses-driven conclusions. Since these were exploratory in nature, correction for the conduct of multiple tests, was deemed unnecessary. While Type I and Type II errors may have occurred, since null hypotheses testing was not a primary study purpose, this does not affect the primary findings. Our findings are based only on participants who decided to have surgery and thus findings do not address decisions not to have surgery. Finally, the time between these surgeries and the data collection varied greatly. Those with a longer time since surgery may have had less ability to recall details, emotions, and feelings associated with DM. Longer times since surgery may have also allowed some participants to be more detached in their assessments.

Conclusion

Above all, we have attempted to illustrate the complexity of NBB DM, as individuals move from broad factors to enactment, and then to outcomes. While every decision is unique, the patterns we have uncovered demonstrate the multiple, complex ways people consider and weigh a range of pertinent concerns and circumstances. These considerations include the nature of one’s healthcare system, providers’ professional style of healthcare delivery, the circumstances of NBB dysfunction, and the social ramifications of various choices in DM towards the best outcomes. With greater evidence for treatment effectiveness, especially for bowel, we can decrease the complexity of these decisions for participants with SCI, thus increasing the likelihood of successful outcomes.

Clear patterns emerged in terms of factors influencing DM enactment and attendant outcomes of each decision. Satisfaction with surgery outcomes was associated with resolution of problems, clear communications, as well as a focus on personal goals and expectations. Attending to the complexity of the DM process through careful listening and clear communication, will allow clinicians to better assist patients in making the best decisions for NBB management including surgical options, which will in turn foster greater satisfaction and improved QOL. Because shared DM promotes autonomy and self-confidence, interventions to increase engagement in DM can be beneficial to persons with SCI facing NBB related surgeries.²² Lastly, clinical practice guidelines around surgery as treatment for NBB dysfunction after SCI should highlight the importance of a patient-provider alliance in treatment DM, discussing risks and consequences of each option.

Funding Statement

This work was supported by Award Number W81XWH-17-1-0494 (UNCLASSIFIED) of the US Department of Defense, Congressionally Directed Medical Research Program (CDMRP), Spinal Cord Injury Research Program (SCIRP); Proposal Log Number SC160219 (IRB Number HUM00129856).

Disclaimer statements

Contributors None.

Conflicts of interest Authors have no conflict of interests to declare.