Choosing non-pharmacological treatments for neuropathic pain in spinal cord injury: a qualitative study.

PURPOSE: The aims of this study were to explore (1) the considerations of people with spinal cord injury (SCI) in choosing to use non-pharmacological treatments (N-PTs) for neuropathic pain (NP), (2) which factors influence their decision and who is involved in this choice. MATERIALS AND METHODS: Eleven individuals with SCI and NP were interviewed. Interviews were transcribed verbatim, transcripts were analysed through thematic coding, following an inductive content analysis approach. RESULTS: A journey towards finding and choosing N-PTs emerged. Key phases in this journey were: motives, strategy and practical considerations. Pain and its impact on their life led participants to consider N-PTs. Motives were participants' negative attitudes towards regular medication, willingness to try everything and disappointment and frustration with the guidance from their health care provider (HCP). The search strategies often involved third parties and the internet. This led them to choose a specific N-PT. The journey was influenced by one's attitude, previous personal experience, experience of HCPs, financial considerations, availability and convenience of the treatment. CONCLUSIONS: The journey individuals with SCI and NP go through to find N-PTs to manage pain is difficult and often lonely. Findings highlight the importance of HCPs accompanying people with SCI in finding N-PTs.

People with spinal cord injury (SCI) often search for non-pharmacological treatments to treat their neuropathic pain.As people with SCI feel alone in their search, health care providers need to accompany them in seeking non-pharmacological treatments to try and alleviate their neuropathic pain.Influencing factors on this search are one's attitude, previous personal experience, experience of the health care provider, financial considerations, availability and convenience of the treatment.Awareness on these influencing factors is important to accompany people with SCI in their search.

Spinal cord injuries and bowel stomas: timing and satisfaction with stoma formation and alterations in quality of life.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: Neurogenic bowel dysfunction (NBD) is frequent among individuals with spinal cord injury (SCI) and is often difficult to treat. A bowel stoma is considered the last-resort treatment option for individuals with SCI and severe NBD. This study aims to explore whether individuals are satisfied with their bowel stoma and how they feel about the timing of stoma formation. Furthermore, we want to explore side effects addressing diversion colitis and changes in quality of life (QOL) after stoma formation. SETTING: Netherlands, community. METHODS: We included participants aged at least 18 years with a traumatic or non-traumatic SCI and bowel stoma. Questions regarding timing of stoma formation, alterations in QOL after stoma formation and experienced side effects of the bowel stoma were addressed in an online questionnaire. RESULTS: In total 23 participants filled out the online survey. Twenty-two participants (96%) were satisfied with their bowel stoma and 83% felt their stoma was placed too late or far too late. The large majority (>80%) reported improvements in the four QOL domains after the procedure. Nine participants reported stoma-related problems in the last month. In the last three months, seven participants (30%) reported to have diversion colitis. Four of these seven participants experienced this at least once a week or more. Two participants stated this had moderate influence on daily activities. CONCLUSIONS: Most participants with SCI experienced improvement in QOL and in retrospect wanted their bowel stoma earlier. Early, extensive conversations to inform individuals about bowel stoma as a treatment option is recommended.

Neuropathic pain in spinal cord injury: topical analgesics as a possible treatment.

STUDY DESIGN: Review of the literature and semi-structured interviews. OBJECTIVE: To explore the possible use of topical analgesics for the treatment of neuropathic pain (NP) in spinal cord injury (SCI). SETTING: Institute for Neuropathic Pain, Soest, The Netherlands. METHODS: A review was performed of studies on topical analgesics for SCI-related NP published up to May 2019. In addition, eight persons with SCI-related NP who were treated with topical analgesics were interviewed in a semi-structured interview on their experience with topical analgesics. RESULTS: Seven studies (five case reports and two case series) were found that evaluated the use of topical analgesics for SCI-related NP. None of the studies used a control treatment. Topical analgesics included baclofen, ketamine, lidocaine, capsaicin, and isosorbide dinitrate. All studies reported a decrease in NP over time. Persons interviewed were 49-72 years of age and all but one had an incomplete SCI. They used topical agents containing phenytoin, amitriptyline, baclofen, ketamine or loperamide. All showed a decrease in pain of at least 3 points on the 11-point numeric rating scale during this treatment. DISCUSSION/CONCLUSIONS: Evidence on the use of topical analgesics in SCI is scarce. Case reports, case series and interviews suggest that the use of topical analgesics can be beneficial in treating SCI-related NP. Placebo-controlled studies are required to investigate the effect of topical analgesics on SCI-related NP.

Study protocol of a double-blind randomised placebo-controlled trial on the effect of a multispecies probiotic on the incidence of antibiotic-associated diarrhoea in persons with spinal cord injury.

STUDY DESIGN: Multi-centre, double-blind randomised placebo-controlled study. OBJECTIVE: To investigate whether the use of a multispecies probiotic can prevent antibiotic-associated diarrhoea in people with spinal cord injury (SCI). SETTING: Three Dutch SCI rehabilitation centres. METHODS: Fifty-six people aged 18-75 years with SCI during inpatient rehabilitation, who require antibiotics, will be given probiotics or placebo randomly assigned (T0). After cessation of the antibiotics (T1), the participants will use probiotics/placebo for 3 more weeks (T2). Defaecation, assessed by the Bristol Stool Scale, and bowel management will be monitored daily until 2 weeks after cessation of probiotics/placebo intake (T3). Also, the degree of nausea and information on quality of life will be collected at T0, T1, T2 and T3. MAIN OUTCOME MEASURES: The difference between the incidence of antibiotic-associated diarrhoea between people with SCI using probiotics compared to those using a placebo at the moment the antibiotics stops, the probiotics stops and two weeks thereafter. SECONDARY OUTCOME MEASURES: The time to reach effective bowel management, degree of nausea and quality of life. REGISTRATION: The Dutch Trial Register- NTR 5831.

Is Fitbit Charge 2 a feasible instrument to monitor daily physical activity and handbike training in persons with spinal cord injury? A pilot study.

STUDY DESIGN: It is a longitudinal pilot study. OBJECTIVES: To investigate the feasibility of a low-cost and widely used fitness tracker with step count and heart rate data to monitor daily physical activity in wheelchair users with spinal cord injury (SCI). SETTING: Dutch community. METHODS: Six participants with SCI who were in training for a handbike event were recruited. They were asked to wear a Fitbit Charge 2® 24 h a day for at least 2 weeks and were questioned about the utility and user-friendliness of this device. RESULTS: Five out of six participants managed to wear the device nonstop for 2 weeks, and continued to wear the device after this initial period. Most participants were enthusiastic about the direct feedback provided by the tracker and reported the data to be accurate. Data collected during more than 2 months of three participants and during 8 months on one of them showed the possibility of detecting training days and observing interpersonal and intrapersonal variation in daily physical activity level. CONCLUSIONS: A commercially available, low-cost, self-monitoring multi-sensor wrist device or a fitness tracker like the Fitbit Charge 2® can be a promising instrument to monitor daily activity levels among wheelchair users with SCI. The free commercial dashboard and log data clearly show trends of variations in physical activity and increases in heart rate, which are of value to both researchers and clinicians interested in identifying training schedules of wheelchair athletes.

The importance of 'global meaning' for people rehabilitating from spinal cord injury.

STUDY DESIGN: Qualitative study. OBJECTIVES: To explore whether aspects of global meaning (that is, fundamental beliefs and life goals concerning core values, relationships, worldview, identity and inner posture) are associated with processes and outcomes in rehabilitation, as experienced by people with spinal cord injury (SCI). SETTING: People living in the community receiving outpatient rehabilitation in a Dutch rehabilitation center. METHODS: In-depth semi-structured interviews were conducted with 16 people with SCI. Interviews were analyzed using qualitative research methods: structural and provisional coding. RESULTS: Core values, relationships, worldview, identity and inner posture (that is, the way in which people relate to the facts of life) were associated with various processes and outcomes of rehabilitation. Elements of the rehabilitation process included motivation, regulation of emotion, making decisions and handling stress. Elements of the outcome of rehabilitation included physical functioning, emotional functioning, social functioning and subjective sense of meaning. The influence was positive, with the exception of one case in which worldview and inner posture were negatively associated with motivation. Besides that, respondents emphasized the importance of rehabilitation professionals attuning to their global meaning. CONCLUSION: All aspects of global meaning were positively associated with various processes and outcomes of rehabilitation. It is recommended that rehabilitation professionals are aware of the importance of global meaning to people with SCI and that they take people's fundamental beliefs and life goals into account.

Effects of hybrid cycling versus handcycling on wheelchair-specific fitness and physical activity in people with long-term spinal cord injury: a 16-week randomized controlled trial.

STUDY DESIGN: This is an open randomized controlled trial. OBJECTIVE: The objective of this study was to investigate the effects of a 16-week hybrid cycle versus handcycle exercise program on fitness and physical activity in inactive people with long-term spinal cord injury (SCI). SETTING: The study was conducted in two rehabilitation centers with a specialized SCI unit. METHODS: Twenty individuals (SCI⩾8 years) were randomly assigned to a hybrid cycle (voluntary arm exercise combined with functional electrical stimulation (FES)-induced leg exercise) or a handcycle group. During 16 weeks, both groups trained twice a week for 30 min at 65-75% heart rate reserve. Outcome measures obtained before, during and after the program were fitness (peak power output, peak oxygen consumption), submaximal VO2 and heart rate (HR), resting HR, wheelchair skill performance time score) and physical activity (distance travelled in wheelchair and Physical Activity Scale for Individuals with Physical Disabilities (PASIPD) score). Changes were examined using a two-factor mixed-measures analysis of variance. RESULTS: For all fitness parameters, except for submaximal VO2, no interaction effects were found. The hybrid cycle group showed a decrease in VO2 over time in contrast to the handcycle group (P=0.045). An overall reduction in HRrest (5±2 b.p.m.; P=0.03) and overall increase in PASIPD score (6.5±2.1; P=0.002) were found after 16 weeks of training. No overall training effects were found for the other fitness and activity outcome measures. CONCLUSION: In the current study, hybrid cycling and handcycling showed similar effects on fitness and physical activity, indicating that there seem to be no additional benefits of the FES-induced leg exercise over handcycle training alone.

Gluteal blood flow and oxygenation during electrical stimulation-induced muscle activation versus pressure relief movements in wheelchair users with a spinal cord injury.

BACKGROUND: Prolonged high ischial tuberosities pressure (IT pressure), decreased regional blood flow (BF) and oxygenation (%SO2) are risk factors for developing pressure ulcers (PUs) in patients with spinal cord injury (SCI). Electrical stimulation (ES)-induced gluteal and hamstring muscle activation may improve pressure distribution by changing the shape of the buttocks while sitting and also increase BF and %SO2. OBJECTIVE: To compare acute effects of ES-induced gluteal and hamstring muscle activation with pressure relief movements (PRMs) on IT pressure, BF and %SO2. PARTICIPANTS AND METHODS: Twelve men with SCI performed PRMs - push-ups, bending forward and leaning sideward - and received surface ES (87±19 mA) to the gluteal and hamstring muscles while sitting in their wheelchair. Ischial tuberosities pressure was measured using a pressure mapping system; (sub)cutaneous BF and %SO2 were measured using reflection spectroscopy and laser Doppler, respectively. RESULTS: Compared with rest (156±26 mm Hg), IT pressure was significantly lower during all other conditions (push-ups 19±44; bending forward 56±33; leaning sideward 44±38; ES 67±45 mm Hg). For the whole group, all PRMs significantly augmented BF (+39 to -96%) and %SO2 (+6.0 to -7.9%-point), whereas ES-induced muscle activation did only for peak BF. In all, 63% of the participants showed an increased BF (average 52%) with ES. CONCLUSION: PRMs acutely reduced IT pressure and improved oxygenation and BF in SCI. The currently used ES method cannot replace PRMs, but it may be used additionally. ES-induced muscle activation is not as effective for acute pressure relief, but the frequency of stimulation is much higher than the performance of PRMs and can therefore be more effective in the long term.

Effects of electrical stimulation-induced gluteal versus gluteal and hamstring muscles activation on sitting pressure distribution in persons with a spinal cord injury.

STUDY DESIGN: Ten participants underwent two electrical stimulation (ES) protocols applied using a custom-made electrode garment with built-in electrodes. Interface pressure was measured using a force-sensitive area. In one protocol, both the gluteal and hamstring (g+h) muscles were activated, in the other gluteal (g) muscles only. OBJECTIVES: To study and compare the effects of electrically induced activation of g+h muscles versus g muscles only on sitting pressure distribution in individuals with a spinal cord injury (SCI). SETTING: Ischial tuberosities interface pressure (ITs pressure) and pressure gradient. RESULTS: In all participants, both protocols of g and g+h ES-induced activation caused a significant decrease in IT pressure. IT pressure after g+h muscles activation was reduced significantly by 34.5% compared with rest pressure, whereas a significant reduction of 10.2% after activation of g muscles only was found. Pressure gradient reduced significantly only after stimulation of g+h muscles (49.3%). g+h muscles activation showed a decrease in pressure relief (Δ IT) over time compared with g muscles only. CONCLUSION: Both protocols of surface ES-induced of g and g+h activation gave pressure relief from the ITs. Activation of both g+h muscles in SCI resulted in better IT pressure reduction in sitting individuals with a SCI than activation of g muscles only. ES might be a promising method in preventing pressure ulcers (PUs) on the ITs in people with SCI. Further research needs to show which pressure reduction is sufficient in preventing PUs.