The clinical and cognitive spectrum of locked-in syndrome: 1-year follow-up of 100 patients.

In patients with locked-in syndrome (LIS), it is not known exactly to what extent cognitive functions are preserved and it is not known exactly how much it has improved. We aimed to examine the clinical and cognitive features of LIS 1 year after stroke. One hundred patients with locked-in syndrome (LIS) were recruited between January 2008 and May 2019 among 8200 patients with ischemic stroke. Patients were classified into two groups as single pontine infarcts (n = 72), and pontine plus multiple ischemic lesions (PMIL) (n = 28). Since the patients had limited motor and verbal response, the cognitive status of the patients in the early and late stages was evaluated with the Short Neuropsychological Questionnaire for Disabled Patients (SNQDP) test. At the onset of stroke, orientation to time and place was normal in 43% of patients with a single infarct compared with 18% of those with PMIL (OR 3.48; 95% CI 1.10-10.18; P = 0.015). There was no sustained visual fixation or tracking in 53% of patients with a single pontine infarct and 82% of those with PMIL (OR 4.12; 95% CI 1.41-12.02; P = 0.005). After 1-year follow-up, there was significant difference between patients with a single infarct and those with PMIL regarding to perception and execution, especially complex command follow (P = 0.042), attention span and concentration (P = 0.30), intelligible verbalization (P = 0.022). There was relatively high incidence (24%) of patients with a "good outcome" (mRS = 3) in those with single infarct. Given as in our study that many patients can show significant improvement in LIS, we recommend aggressive supportive measures, intense physical, speech and cognitive therapy to facilitate interaction with others and the environment.

Physical Activity and Sedentary Behavior From Discharge to 1 Year After Inpatient Rehabilitation in Ambulatory People With Spinal Cord Injury: A Longitudinal Cohort Study.

OBJECTIVE: To evaluate changes in duration of physical activity (PA) and sedentary behavior (SB) from discharge to 1 year after inpatient rehabilitation in ambulatory people with spinal cord injury (SCI). DESIGN: Longitudinal cohort study with objective measurements of physical behavior at discharge and at 6 and 12 months post discharge. SETTING: Three rehabilitation centers and the participant's home environment. PARTICIPANTS: Participants (N=47) with ambulatory function were consecutively recruited from the self-management and self-efficacy in patients with SCI cohort (age 18 years or older, recent SCI, expected inpatient stay ≥4wk). Mean age was 54.5±12.9 years, all had incomplete lesions, 53% were men, 49% had tetraplegia, and 51% were community ambulators at discharge. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Duration (min) of PA (summed duration of walking, cycling, running, and wheeling) and SB (sitting/lying). RESULTS: Mean duration of PA increased by 21 min/d (95% confidence interval, 7-35) and SB decreased by 64 min/d (95% confidence interval, -94 to -35) from discharge to 6 months after inpatient rehabilitation. No changes were found in the second half-year. One year after discharge mean PA was 116±59 min/d and mean SB was 665±121 min/d. The increase in PA was the result of an almost doubling of time spent walking. Variability in physical behavior and its change was large. Older age and lower ambulation level were associated with lower PA, lower ambulation level with higher SB, and tetraplegia was associated with a reduced increase in PA. CONCLUSIONS: At group level, duration of PA and SB improved following inpatient rehabilitation in ambulatory people with SCI. However, there were large differences between individuals. Levels 1 year after discharge were still unfavorable, particularly regarding SB.

Examining implicit procedural learning in tetraplegia using an oculomotor serial reaction time task.

BACKGROUND AND OBJECTIVE: Clinical observations indicate that implicit procedural learning, a central component of physical and psychosocial rehabilitation, is impeded following spinal cord injury. In accordance, previous research has revealed a specific deficit in implicit sequence learning among individuals with paraplegia using a standard, manual version of the serial reaction time task. To extend these findings and shed light on the underlying sources of potential spinal cord injury-related deficits in sequence learning, we used an ocular activated serial reaction time task to compare sequence learning performance between individuals with tetraplegia and healthy controls. PARTICIPANTS AND MEASURES: Twelve participants with spinal cord injury in C5-T1 were compared to 12 matched control participants on measures derived from an ocular activated serial reaction time task. Depression and additional cognitive measures were assessed to explore the source and specificity of potential sequence learning deficits. RESULTS: Like controls, and in contrast with previous findings in paraplegia, the spinal cord injury group showed intact implicit sequence learning, evidenced by declining reaction times and improved anticipation over the first six blocks of the serial reaction time task, and an advantage for the initial learning sequence over a novel interference sequence. CONCLUSIONS: The ocular activated serial reaction time task elicited a performance pattern similar to standard motor versions, such that participants with tetraplegia demonstrated unimpaired sequence learning. This suggests that previously reported implicit sequence learning deficits in spinal cord injury directly involved motor functioning rather than cognitive aspects of the task, and that the ocular activated sequence learning task could be a valid alternative for assessing implicit sequence learning in populations that cannot perform spinal-cord dependent motor tasks. Implications for post-spinal cord injury rehabilitation and adjustment are discussed.

Quality of life, concern of falling and satisfaction of the sit-ski aid in sit-skiers with spinal cord injury: observational study.

STUDY DESIGN: Observational study. OBJECTIVE: To describe (1) user satisfaction, (2) the Quality of Life (QoL) and (3) fear of falling in individuals with tetraplegia or paraplegia who used a mono-ski for sit-skiing. SETTING: Spinal units and Sport associations. METHODS: An observational study of people with spinal cord injury (SCI) who used a sit-ski. Participants were recruited in various SCI rehabilitation centers and sport associations. Participants completed three assessment tools: the Quebec User Evaluation of Satisfaction with assistive Technology (QUEST 2.0); the World Health Organization Quality of Life (WHOQoL-BREF); the Spinal Cord Injury Fall Concern Scale (SCI-FCS). Results were evaluated with chi-squared test and Kolmogorov-Smirnov's test and the significance was set for p values < 0.05. RESULTS: Fifteen participants were included. Results showed positive and statistically significant values for all the items of the SCI-FCS related to fear of falling, and for most of the items of the WHOQoL-BREF related to QoL and the QUEST 2.0 related to satisfaction with the device. CONCLUSIONS: This study highlights that sit skiing is correlated with high levels of satisfaction with the mono-ski, increases in QoL, and low levels of fear of falling. In adding these findings to the existent literature, it can be stated with more certainty that sit-skiing is a sport that can be recommended in rehabilitation and sports therapy programs.

Development and feasibility testing of an online virtual reality platform for delivering therapeutic group singing interventions for people living with spinal cord injury.

People with quadriplegia have a high risk for respiratory illness, social isolation and depression. Previous research has demonstrated that therapeutic singing interventions can not only improve breathing function and speech loudness, but also improve mood and social connectedness for people with quadriplegia. Face-to-face group attendance is difficult for this population due to difficulties with distance and travel. Online environments offer an accessible and cost-effective solution for people to connect with others without leaving their home. In a two-phase iterative design, we explored and tested different approaches for delivering online music therapy sessions with 12 patients from an inpatient spinal cord injury rehabilitation service. Six participants in Phase 1 trialled different virtual reality headsets and completed a short interview about their experience of the equipment and online singing trials. Outcomes from Phase 1 testing led to the development of a custom-built virtual reality application for online group music therapy sessions with low-latency audio. We tested the acceptability and feasibility of this platform in comparison to face-to-face and teleconference options for music therapy with six different patients. These participants completed three validated questionnaires: System Usability Scale, Quebec User Evaluation of Satisfaction with assistive Technology, and Psychosocial Impact of Assistive Devices Scale, and an interview about their experience. Questionnaire scores were good with mean ratings of 4.4 for Quebec User Evaluation of Satisfaction with assistive Technology, 53 for System Usability Scale and positive mean Psychosocial Impact of Assistive Devices Scale scores of 1.5 for competence, 2 for adaptability and 1.5 for self-esteem. Thematic analysis of post-session qualitative interviews revealed five themes: virtual reality was a positive experience, virtual reality was immersive and transportative, virtual reality reduced inhibitions about singing in front of others, virtual reality may reduce social cues, and the virtual reality equipment was comfortable, accessible and easy to use. Telehealth options, including a custom-designed virtual reality program, with low-latency audio are an acceptable and feasible mode of delivery for therapeutic singing interventions for people with spinal cord injury. Future non-inferiority research is needed to test online delivery modes for music therapy in comparison to face-to-face treatment.

Patterns of cognitive deficits in persons with spinal cord injury as compared with both age-matched and older individuals without spinal cord injury.

Context/Objective: Cognitive deficits can impact as many as 60% of individuals with spinal cord injury (SCI). In an effort to identify the nature of cognitive deficits in SCI, we examined neuropsychological test performance in individuals with SCI, age matched healthy controls and older healthy controls.Design: Participants completed a motor-free neuropsychological test battery assessing attention, working memory, information processing speed, new learning /memory and executive control.Setting: Outpatient rehabilitation research facility.Participants: Participants included 60 individuals with chronic spinal cord injury [SCI; 32 with paraplegia (T2-T12) and 28 with tetraplegia (C3-T1)], 30 age-matched healthy controls (AMHC; 30-40 years old) and 20 older healthy controls (OHC; 50-60 years old).Outcome Measures: Wechsler Intelligence Scale - 3rd edition (WAIS-III) Digit Span and Letter-Number Sequencing; Symbol Digit Modalities Test (SDMT) - oral version; California Verbal Learning Test-II; Paced Auditory Serial Addition Test (PASAT); Wechsler Abbreviated Scale of Intelligence (WASI); Delis-Kaplan Executive Function System; Verbal Fluency subtest.Results: Significant differences were noted between the SCI and AMHC groups on measures of information processing speed, new learning and memory, and verbal fluency. No significant differences were noted between the groups on tests of attention or working memory.Conclusion: The current study documented differences in specific realms of cognitive functioning between a chronic SCI sample and AMHC. Implications for cognitive rehabilitation and overall quality of life are discussed. Additional research is needed utilizing a more comprehensive battery of motor-free neuropsychological tests that avoid the confound of upper limb motor limitations on cognitive performance.

Factors influencing the community integration of patients following traumatic spinal cord injury: a systematic review.

BACKGROUND: Spinal cord injury (SCI) is a high-cost disabling condition, which brings a huge number of changes in individual's life. The emphasis of rehabilitation has moved from medical administration to issues that affect quality of life and community integration. This systematic review was conducted to identify the factors associated with community reintegration of patients with spinal cord injury. . METHODS: Google Scholar, PEDro, Pakmedinet, AMED, BIOMED central, Cochrane Library, MEDLINE, PsychoINFO, PUBMED, ScienceDIRECT, Scirus and Wiley Online Library databses were searched by using key words 'Spinal cord injury' 'Paraplegia' or 'Spinal Cord Lesion' or Tetraplegia. They were cross-linked with 'Community reintegration', 'Community participation' and 'Community access'. The methodological quality of the studies included was analysed by using McMaster University Tool and Thomas Tool. The data extracted included sample size, intervention, duration, results, outcome measures, and follow-up period. RESULTS: A total of 11 relevant studies were located. The evidence extracted was classified into four groups; health-related barriers or facilitators, environment-related barriers or facilitators, psychological barriers and social barriers that are associated with community reintegration of such individuals. CONCLUSIONS: The review revealed that there were more barriers in the form of health-related issues, personal and environmental, psychological and social issues that hinder the community reintegration of individuals with spinal cord injury compared to facilitators. Most studies identified special challenges related to environment in the sense of accessibility of home and public buildings and transportation. Removing barriers related to health, environment, and psychological and social factors can enhance community reintegration of such patients.

Semantic and BCI-performance in completely paralyzed patients: Possibility of language attrition in completely locked in syndrome.

Patients with completely locked-in syndrome (CLIS) are incapable of any voluntary muscle movement and do not have any means of communication. Recently functional near infrared spectroscopy (fNIRS) based brain computer interface (BCI) has been successfully used to enable communication with these patients. The developed fNIRS-BCI system relies on the intactness of language comprehension in these patients in all dimensions of language. Interwoven language and motor cortex in brain, and lack of muscular activity in long run, can cause language attrition due to complete immobility in CLIS patients. In this study we have investigated effects of semantic content of sentences presented to a CLIS patient on the performance of the BCI system during a YES/NO paradigm. Comparison of communication success rate in BCI classification between different semantic categories indicate that semantic content of sentences presented to a CLIS patient can affect the BCI performance. Affected concepts are mostly associated with executive words. These findings can be beneficial towards development of more reliable communication device for patients in CLIS. In addition, these results may assist in elucidating the cognitive changes in completely paralyzed patients with the passage of time since the onset of total immovability.

Positive airway pressure for sleep-disordered breathing in acute quadriplegia: a randomised controlled trial.

RATIONALE: Highly prevalent and severe sleep-disordered breathing caused by acute cervical spinal cord injury (quadriplegia) is associated with neurocognitive dysfunction and sleepiness and is likely to impair rehabilitation. OBJECTIVE: To determine whether 3 months of autotitrating CPAP would improve neurocognitive function, sleepiness, quality of life, anxiety and depression more than usual care in acute quadriplegia. METHODS AND MEASUREMENTS: Multinational, randomised controlled trial (11 centres) from July 2009 to October 2015. The primary outcome was neurocognitive (attention and information processing as measure with the Paced Auditory Serial Addition Task). Daytime sleepiness (Karolinska Sleepiness Scale) was a priori identified as the most important secondary outcome. MAIN RESULTS: 1810 incident cases were screened. 332 underwent full, portable polysomnography, 273 of whom had an apnoea hypopnoea index greater than 10. 160 tolerated at least 4 hours of CPAP during a 3-day run-in and were randomised. 149 participants (134 men, age 46±34 years, 81±57 days postinjury) completed the trial. CPAP use averaged 2.9±2.3 hours per night with 21% fully 'adherent' (at least 4 hours use on 5 days per week). Intention-to-treat analyses revealed no significant differences between groups in the Paced Auditory Serial Addition Task (mean improvement of 2.28, 95% CI -7.09 to 11.6; p=0.63). Controlling for premorbid intelligence, age and obstructive sleep apnoea severity (group effect -1.15, 95% CI -10 to 7.7) did not alter this finding. Sleepiness was significantly improved by CPAP on intention-to-treat analysis (mean difference -1.26, 95% CI -2.2 to -0.32; p=0.01). CONCLUSION: CPAP did not improve Paced Auditory Serial Addition Task scores but significantly reduced sleepiness after acute quadriplegia. TRIAL REGISTRATION NUMBER: ACTRN12605000799651.

Worth the effort? Weighing up the benefit and burden of continuous positive airway pressure therapy for the treatment of obstructive sleep apnoea in chronic tetraplegia.

STUDY DESIGN: Mixed methods OBJECTIVES: Continuous positive airway pressure (CPAP) therapy is the recommended treatment for obstructive sleep apnoea (OSA). The aim of this study was to estimate CPAP adherence in people with tetraplegia and OSA, and to explore the barriers and facilitators to CPAP use. SETTING: Hospital outpatient department in Melbourne, Australia METHODS: People with chronic tetraplegia and OSA were commenced with auto-titrating CPAP and supported for 1 month. Semi-structured interviews were conducted with participants at one month and analysed thematically. CPAP usage was measured at 1, 6 and 12 months, with "adherent" defined as achieving more than 4 h average per night. RESULTS: Sixteen participants completed the study (80% male; mean age 56 (SD = 15)). Mean nightly CPAP use at one month was 3.1 h (SD = 2.5; 38% adherent), and at 6 months and 12 months were 2.6 h (SD = 2.8; 25% adherent) and 2.1 h (SD = 3.2; 25% adherent). The perceived benefit/burden balance strongly influenced ongoing use. Burden attributed to CPAP use was common, and included mask discomfort, and physical and emotional problems. Adherent participants were motivated by the immediate daytime benefits to mood, alertness and sleepiness. There was a tendency to not recognise symptoms of OSA until after they were treated. CONCLUSION: CPAP use is challenging for people with tetraplegia, who experience substantial burden from using the device. When tolerated, the proximate benefits are substantial. People with tetraplegia need more intensive support for longer to help them overcome the burdens of CPAP and benefit from the treatment.

The golden year: How functional recovery sets the stage for tendon transfer surgery among patients with tetraplegia-a qualitative analysis.

BACKGROUND: Tendon transfer surgery can effectively improve hand function for patients with tetraplegia but remains poorly utilized. Little is known regarding how patients' rehabilitation experiences influence their perception of function, identity, and coping to shape their reconstructive context. METHODS: We performed a cross-sectional qualitative analysis of 19 participants with C4-C7 cervical spinal injuries: 9 patients had undergone reconstruction; 10 had not. Semistructured interviews were conducted using an interview guide focusing on rehabilitation experience, the relationship between function and identity, and how patient experience evolved. Interview transcripts were analyzed using grounded theory. RESULTS: The study sample was predominantly male (79%), white (89%), and American Spinal Injury Association grades A-D (grade A: 42%; grade B: 32%; grade C: 16%; grade D: 10%). Recognizing rehabilitation's necessity, functional gains, and constructive patient-therapist relationships promoted engagement in therapy. Poor insurance coverage and financial constraints decreased rehabilitation access. Function affected identity through the degree to which it tied participants to a "patient" role. Early in recovery, patients' function, roles, and attitudes were fluid but solidified over time; how satisfied patients were with these final positions influenced how they coped. CONCLUSION: The balance of patients' positive and negative coping has been found to influence patients' progression to surgery. This study describes how function and identity contribute to coping. Participants' function and identity evolved during a finite period we call "the golden year," before reaching a fixed point around which they built their lives. The norms patients establish during this time may affect receptiveness to surgery.

Relationships Between Specific Functional Abilities and Health-Related Quality of Life in Chronic Traumatic Spinal Cord Injury.

OBJECTIVE: The objective of this study was to explore the relationships between specific functional abilities assessed from the third version of the Spinal Cord Injury Measure and health-related quality of life after a traumatic spinal cord injury. DESIGN: A prospective cohort of 195 patients who had sustained a traumatic spinal cord injury from C1 to L1 and consecutively admitted to a single level 1 spinal cord injury-specialized trauma center between April 2010 and September 2016 was studied. Correlation coefficients were calculated between Spinal Cord Injury Measure scores and Short Form 36 version 2 summary scores (physical component score; mental component score). RESULTS: The total Spinal Cord Injury Measure score correlated moderately with the physical component score in the entire cohort, correlated strongly with physical component score in tetraplegics, did not correlate with physical component score in paraplegics, and did not correlate with mental component score. Mobility subgroup and individual items scores showed the strongest correlations with the physical component score in the entire cohort, followed by self-care and sphincter management. CONCLUSIONS: This work is significant being the first to determine which specific functional abilities are mostly related to health-related quality of life and highlights the differences between tetraplegic and paraplegic patients. Our findings could help clinicians to guide rehabilitation plan based on importance of specific functional abilities in relationship with the health-related quality of life.

Women's experiences of sexuality after spinal cord injury: a UK perspective.

STUDY DESIGN: Cross-sectional phenomenological qualitative study. OBJECTIVES: To investigate women's experience of sexuality after spinal cord injury (SCI) with a focus on rehabilitation and manging practical impact. SETTING: Women with SCI living in the community in United Kingdom (UK). METHODS: Participants were recruited via three UK SCI centres, ensuring tetraplegia, paraplegia and cauda equina syndrome representation. Single semi-structured interviews exploring individual's experiences around sexuality following SCI were recorded and transcribed for thematic analysis. RESULTS: Twenty-seven women aged 21-72 years, sexually active since SCI were interviewed, each lasting 17-143 min (mean 55 min). Six key themes emerged: physical change, psychological impact, dependency, relationships and partners, post injury sexual life and sexuality rehabilitation. CONCLUSIONS: Sexuality remains an important, valued aspect of female identity following SCI; sexual activity continues and though altered remains enjoyable and rewarding. Sexuality rehabilitation should commence early, preparing women for altered sexual sensation, disclosure of altered sexual function to partners, and encouraging early self-exploration. Techniques optimising continence management in preparation for and during sex should be taught. Participants identified a need for women-only education and support groups, increased peer support, self-esteem, communication and social skills training and even fashion advice and pampering sessions during rehabilitation. Support and education for partners are needed. Staff require support to be knowledgeable and confident in addressing women's sexuality needs. Use of the Ex-PLISSIT model for psychosexual support could help staff to better meet these needs.

Relationship of Fitness and Wheelchair Mobility With Encounters, Avoidances, and Perception of Environmental Barriers Among Manual Wheelchair Users With Spinal Cord Injury.

OBJECTIVE: To assess (1) if fitness and mobility are related to behavior and perception of physical barriers and (2) if behavior and physical barrier perception are related. DESIGN: Cross-sectional case series. SETTING: Academic Medical Laboratory. PARTICIPANTS: Manual wheelchair users (N=50) with chronic spinal cord injury (62% paraplegia). INTERVENTION: None. MAIN OUTCOME MEASURES: Participants completed the following assessments: (1) fitness: graded exercise test (aerobic) and Wingate (anaerobic); (2) mobility: 6-minute push test and 30-second sprint test; (3) physical barrier behavior: Encounters of Environmental Features in the Environmental Aspects of Mobility Questionnaire (EAMQ); (4) physical barrier perception: Craig Hospital Inventory of Environmental Factor (CHIEF) Environmental Barriers domain. RESULTS: Individuals with paraplegia had higher fitness, mobility, and environmental barrier encounter rates and lower avoidance per encounter rates vs tetraplegia (all P≤.05). For individuals with tetraplegia only, as mobility and fitness increased, frequencies of (1) encounters increased; (2) avoidances per encounter decreased, in multiple EAMQ domains (all P≤.05). Perception of barriers did not differ between lesion levels (P=.79). Mobility and fitness were not related to environmental barriers perception in both groups (all P>.17). CONCLUSIONS: Fitness and mobility are associated with barrier behaviors (ie, encounters and avoidances) among individuals with tetraplegia, but not paraplegia. Despite a greater barrier avoidance rate, persons with tetraplegia do not perceive more physical barriers than persons with paraplegia. Surprisingly, fitness and mobility were not related to perception of barriers in either group. More research is required on if barrier perception, behavior, or both influence participation, to enable rehabilitation programs to tailor interventions to enhance participation.

Associations between time since onset of injury and participation in Dutch people with long-term spinal cord injury.

STUDY DESIGN: Multicentre cross-sectional study. OBJECTIVES: To describe relationships between time since injury (TSI) and participation in individuals with tetraplegia and paraplegia. SETTING: Community sample from the Netherlands METHODS: Individuals (N = 265) aged 28-65 years, living with spinal cord injury (SCI) for ≥10 years, age at injury between 18-35 years and using a wheelchair for everyday mobility in three TSI strata: 10-19, 20-29, and ≥30 years post-injury. The Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) was used, which consists of three scales: Frequency (including subscales for Productive, Leisure, and Social activities), Restrictions, and Satisfaction. Linear regression analyses were used to study the effect of TSI on participation, and to adjust for personal and lesion characteristics, for individuals with tetraplegia and paraplegia separately. RESULTS: Mean age was 48.4 years, with a mean TSI of 24 years. About 73.6% were male, 40.4% had tetraplegia and 81.9% had a motor complete injury. In individuals with tetraplegia (N = 107), longer TSI was independently associated with lower scores on the Frequency scale (p = 0.025) and the subscale frequency of Leisure activities (p = 0.004). In individuals with paraplegia (N = 158), longer TSI was independently associated with lower scores on the subscale frequency of Productive activities (p = 0.006). TSI was not associated with participation Restrictions and Satisfaction with participation. CONCLUSIONS: Longer TSI is associated with a reduced frequency of participation in individuals with long-term SCI. Interestingly, this negative association is not accompanied by a similar association in the person's experience of participation.

[Is there quality of life with locked-in syndrome?] / Kwaliteit van leven bij locked-in-syndroom: kan dat?

A 57-year-old man developed a locked-in state due to a brain stem stroke. He communicated through eye movements. The team suggested treatment should be discontinued, as there was no perspective of improvement. The family was very upset because they experienced sufficient quality of life. We investigated what 'quality of life' means. The literature shows that severely ill and completely care-dependent patients may experience high quality of life; this is called the disability paradox. Patients and families evaluate quality of life by looking for positive things to live for. Some quality-of-life tests, however, understand quality of life as 'functionality'. Healthy people evaluate the situation of people living with handicaps more negatively than the handicapped themselves do. Practitioners may overlook the instability of patients' evaluations: responses and situations may shift. Quality of life as an outcome in clinical trials may be different for individual patients. These insights may improve communication.

The experience of spasticity after spinal cord injury: perceived characteristics and impact on daily life.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: Determine the impact of motor control characteristics attributed to spasticity, such as spasms, stiffness, and clonus on the daily life of people with spinal cord injury (SCI). SETTING: Nationwide, United States. METHODS: Internet-administered questionnaire, the Patient Reported Impact of Spasticity Measure (PRISM) and items describing characteristics of spasticity including stiffness, spasms, clonus, and pain. RESULTS: Of the 145 respondents, 113 (78%) reported a PRISM score of at least 5/164, indicating spasticity had some impact on their daily lives. Stiffness impact was highly correlated (ρ = 0.84; p < 0.01) with the PRISM negative impact on Daily Activities subscale and moderately correlated with the other PRISM subscales (ρ = 0.55-0.63; p < 0.01). Spasm presence had a negligible or low correlation with PRISM negative impact subscales (ρ = 0.29-0.47; p < 0.01). Trunk muscle stiffness and spasms had a low correlation with PRISM Need for Assistance and Daily activities (ρ = 0.42 and ρ = 0.41, p < 0.01, respectively). Anti-spasticity medications were ineffective for 58% of respondents. Pain in the legs was reported by 57% of respondents. CONCLUSIONS: The experience of spasticity is highly individualized, and is often distributed differently across arms, trunk, and legs. Despite the fact that traditional definitions of spasticity focus on reflex responsiveness, the stiffness associated with spasticity appears to be more problematic than spasms or clonus. The self-described characteristics of spasticity and its physiological presentation are complex and related to pain. This varied presentation lends support to the concept that management of spasticity may be best achieved by multimodality strategies.

Provided support, caregiver burden and well-being in partners of persons with spinal cord injury 5 years after discharge from first inpatient rehabilitation.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: To describe type and regularity of support given by partners for individuals with paraplegia versus tetraplegia 5 years after discharge from first inpatient rehabilitation; to describe perceived caregiver burden, mental health and life satisfaction among partners; and to analyse determinants of perceived burden and the partner's mental health and life satisfaction. SETTING: The Netherlands. METHODS: Participants were partners of persons with spinal cord injury (SCI) 5 years after discharge from first inpatient rehabilitation (N = 67). Participants completed a self-report questionnaire. Provided support was assessed with an existing scale consisting of 25 activities for which partners could indicate how often they provide support to the patient. Caregiver burden was assessed with the Caregiver Strain Index. Mental health was measured with the Short-Form Health Survey 36 (mental health subscale), and life satisfaction was measured with the Life Satisfaction Questionnaire. RESULTS: Five years after inpatient rehabilitation, partners provided support with a large variety of activities. How often and in which activities partners provided support was associated with lesion level. About 43% of the partners experienced high levels of caregiver burden. Provided support was related to perceived burden (rS = 0.58) and life satisfaction (rS = -0.24), and burden was negatively related to mental health (rS = -0.47) and life satisfaction (rS = -0.67). CONCLUSIONS: High levels of perceived burden among partners and the associations between higher burden with lower well-being show the importance to prevent caregiver overload in partners of individuals with SCI. Monitoring burden during regular rehabilitation visits may help to early detect burden.