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1.
Spinal Cord ; 62(7): 357-366, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38519564

ABSTRACT

STUDY DESIGN: Non-randomized clinical trial. OBJECTIVES: Examine the feasibility, physical and psychosocial effects of a high intensity functional training (HIFT) exercise program for people with spinal cord injury (pSCI) and their care partners (CPs). SETTING: Community fitness center in a Medically Underserved Area (Fort Smith, USA.) METHODS: A single-group design with three assessment points (before the program, at midpoint (13 weeks), and post-program (25 weeks) was used to examine the effects of up to 49 HIFT sessions over 25-weeks. Sessions were 60 to 75 min in duration and adapted to the abilities of participants. Feasibility measures included recruitment, retention, attendance, safety and fidelity (exercise intensity rated via session-Rating of Perceived Exertion (RPE). Physical measures included cardiovascular endurance, anaerobic power, and muscular strength. Psychosocial measures included perceived social support for exercise, exercise self-efficacy and health-related quality of life. RESULTS: Fourteen pSCI (7 with paraplegia and 7 with tetraplegia, 2 females) and 6 CPs (4 females) were included (median age = 60) (IQR = 15.8). Recruitment rates were 40% for pSCI and 32% for CPs. On average, participants attended 73% (22%) of exercise sessions with a median session-RPE of 5 (IQR = 1). Retention rates were 83% and 67% for pSCI and CPs, respectively. For pSCI and their CPs, large effect sizes were observed for cardiovascular endurance, anaerobic power, muscular strength, and social support for exercise. CONCLUSIONS: For pSCI and their CPs, HIFT appears feasible and potentially leads to improvements in physical and psychosocial health for both groups.


Subject(s)
Exercise Therapy , Spinal Cord Injuries , Humans , Spinal Cord Injuries/rehabilitation , Spinal Cord Injuries/psychology , Male , Female , Middle Aged , Adult , Exercise Therapy/methods , Aged , Caregivers/psychology , Feasibility Studies , Quality of Life , Paraplegia/rehabilitation , Paraplegia/etiology , Paraplegia/physiopathology , Paraplegia/psychology , Quadriplegia/rehabilitation , Quadriplegia/etiology , Quadriplegia/psychology , Quadriplegia/physiopathology
2.
BMC Musculoskelet Disord ; 25(1): 761, 2024 Oct 01.
Article in English | MEDLINE | ID: mdl-39354467

ABSTRACT

BACKGROUND: Spinal cord injury (SCI) results in severe, permanent functional changes and has become a global health priority due to its high incidence, cost, and disability rate. Current national epidemiological data on SCI in China are limited and outdated. This study aimed to provide a comprehensive, national cross-sectional investigation of SCI epidemiology in China. METHODS: This cross-sectional study included 3055 SCI participants aged 8 to 78 years, conducted from May to September 2023. Data collected encompassed demographic characteristics, employment status, etiology, years lived with disability (YLD), family structure, caregiving status, income, health insurance, paralysis type, and health-related quality of life (HRQoL). Descriptive statistics analyses were used to assess demographic and injury characteristics. Group differences were assessed using t-tests, one-way ANOVA and Chi-square tests. Significant factors were examined using multivariate regression analysis. RESULTS: The majority (88.9%) of respondents were aged 15 to 59 years, with a male-to-female ratio of 2.36:1. Car accidents caused 45.4% of tetraplegia cases, falls caused 35.9% of paraplegia cases, and myelitis was the leading cause of non-traumatic SCI. Among paraplegia participants, 65.5% had complete SCI, while 53.1% of tetraplegia participants had incomplete SCI. Functional improvement was reported by 9.58% of participants. Half (50.3%) of the respondents were unemployed, and 75% had incomes below the national average. HRQoL was significantly lower in the SCI population compared to controls, mainly influenced by injury site, income, age and etiology (p < 0.05). CONCLUSIONS: SCI participants in China exhibit low HRQoL and reemployment rates. Accessible community and vocational rehabilitation programs, alongside robust public medical services, are essential for enhancing reemployment and HRQoL among SCI participants, reducing the overall disease burden.


Subject(s)
Quality of Life , Spinal Cord Injuries , Humans , Spinal Cord Injuries/epidemiology , Spinal Cord Injuries/rehabilitation , Spinal Cord Injuries/psychology , Cross-Sectional Studies , Male , Female , Adult , Middle Aged , China/epidemiology , Adolescent , Young Adult , Aged , Child , Paraplegia/rehabilitation , Paraplegia/epidemiology , Paraplegia/psychology
3.
BMC Musculoskelet Disord ; 25(1): 569, 2024 Jul 22.
Article in English | MEDLINE | ID: mdl-39034398

ABSTRACT

BACKGROUND: Chronic pain is a highly prevalent medical condition that negatively impacts quality of life and is associated with considerable functional disability. Certain diseases, such as fibromyalgia, headache, paraplegia, neuropathy, and multiple sclerosis, manifest with chronic pain. OBJECTIVE: The aim of this study is to examine the number and type of tweets (original or retweet) related to chronic pain, as well as to analyze the emotions and compare the societal impact of the diseases under study. METHODS: We investigated tweets posted between January 1, 2018, and December 31, 2022, by Twitter users in English and Spanish, as well as the generated retweets. Additionally, emotions were extracted from these tweets and their diffusion was analyzed. Furthermore, the topics most frequently discussed by users were collected. RESULTS: A total of 72,874 tweets were analyzed, including 44,467 in English and 28,407 in Spanish. Paraplegia represented 23.3% with 16,461 of the classified tweets, followed by headache and fibromyalgia with 15,337 (21.7%) and 15,179 (21.5%) tweets, respectively. Multiple sclerosis generated 14,781 tweets (21%), and the fewest tweets were related to neuropathy with 8,830 tweets (12.5%). The results showed that the primary emotions extracted were "fear" and "sadness." Additionally, the reach and impact of these tweets were investigated through the generated retweets, with those related to headaches showing the highest interest and interaction among users. CONCLUSION: Our results underscore the potential of leveraging social media for a better understanding of patients suffering from chronic pain and its impact on society. Among the most frequently encountered topics are those related to treatment, symptoms, or causes of the disease. Therefore, it is relevant to inform the patient to prevent misconceptions regarding their illness.


Subject(s)
Chronic Pain , Social Media , Humans , Social Media/statistics & numerical data , Chronic Pain/psychology , Chronic Pain/epidemiology , Cross-Sectional Studies , Emotions , Fibromyalgia/psychology , Fibromyalgia/epidemiology , Public Opinion , Multiple Sclerosis/psychology , Multiple Sclerosis/epidemiology , Paraplegia/psychology , Paraplegia/epidemiology , Quality of Life/psychology , Headache/psychology , Headache/epidemiology
4.
Spinal Cord ; 57(4): 301-307, 2019 Apr.
Article in English | MEDLINE | ID: mdl-30374064

ABSTRACT

STUDY DESIGN: Cross-sectional study. OBJECTIVES: Investigating the correlations between basic hope, acceptance of disability, and posttraumatic growth (PTG) in people with traumatic paraplegia, exploring the mediating effect of acceptance of disability. SETTING: Community-dwelling people with traumatic paraplegia in Poland. METHODS: Data were obtained from 281 individuals with paraplegia. The set of questionnaires included: The Posttraumatic Growth Inventory (PTGI); Basic Hope Inventory (BHI); and The Multidimensional Acceptance of Loss Scale. Four dimensions of disability acceptance were measured: subordinating physique relative to other values, enlarging the scope of values, transforming comparative-status values into asset values, and containing the effects of disability. Mediation was tested with the Baron and Kenny's approach. RESULTS: A positive and statistically significant correlation between basic hope, acceptance of disability, and posttraumatic growth was found. Using a hierarchical regression analysis, a mediating effect of acceptance of disability was found for explaining the relationship between basic hope and posttraumatic growth in people with paraplegia. Only two dimensions of disability acceptance, subordinating physique relative to other values and transforming comparative-status values into asset values, were found to play a mediating role. CONCLUSION: Beliefs about the world and the transformation of values ​​that constitute acceptance of disability are important for explaining PTG in people with paraplegia. Correlations between these variables are complex. The correlation between basic hope and posttraumatic growth in individuals with paraplegia may be understood better by taking into account the mediating role of acceptance of disability.


Subject(s)
Adaptation, Psychological , Disabled Persons/psychology , Hope , Paraplegia/psychology , Posttraumatic Growth, Psychological , Spinal Cord Injuries/psychology , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Paraplegia/etiology , Spinal Cord Injuries/complications
5.
J Neuroeng Rehabil ; 16(1): 134, 2019 11 06.
Article in English | MEDLINE | ID: mdl-31694645

ABSTRACT

BACKGROUND: The complex task of Electric Powered Wheelchairs (EPW) prescription relies mainly on personal experience and subjective observations despite standardized processes and protocols. The most informative measurements come from joystick monitoring, but recording direct joystick outputs require to disassemble the joystick. We propose a new solution called "SenseJoy" that is easy to plug on a joystick and is suitable to characterize the driver behavior by estimating the joystick command. METHODS: SenseJoy is a pluggable system embedded on EPW built with a 3D accelerometer and a 2D gyrometer placed within the joystick and another 3D accelerometer located at the basis of the joystick. Data is sampled at 39 Hz and processed offline. First, SenseJoy sensitivity is assessed on wheelchair driving tasks performed by a group of 8 drivers (31 ± 8 years old, including one driver with left hemiplegia, one with cerebral palsy) in a lab environment. Direct joystick measurements are compared with SenseJoy estimations in different driving exercises. A second group of 5 drivers is recorded in the ecological context of a rehabilitation center (41 ± 10 years old, with two tetraplegic drivers, one tetraplegic driver with cognitive disorder, one driver post-stroke, one driver with right hemiplegia). The measurements from all groups of drivers are evaluated with an unsupervised statistical analysis, to estimate driving profile clusters. RESULTS: The SenseJoy is able to measure the EPW joystick inclination angles with a resolution of 1.31% and 1.23% in backward/forward and left/right directions respectively. A statistical validation ensures that the classical joystick-based indicators are equivalent when acquired with the SenseJoy or with a direct joystick output connection. Using an unsupervised methodology, based on a similarity matrix between subjects, it is possible to characterize the driver profile from real data. CONCLUSION: SenseJoy is a pluggable system for assessing the joystick controls during EPW driving tasks. This system can be plugged on any EPW equipped with a joystick control interface. We demonstrate that it correctly estimates the performance indicators and it is able to characterize driving profile. The system is suitable and efficient to assist therapists in their recommendation, by providing objective measures with a fast installation process.


Subject(s)
Psychomotor Performance , Wheelchairs , Accelerometry , Adult , Behavior , Cerebral Palsy/psychology , Cerebral Palsy/rehabilitation , Equipment Design , Female , Healthy Volunteers , Hemiplegia/psychology , Hemiplegia/rehabilitation , Humans , Male , Middle Aged , Paraplegia/psychology , Paraplegia/rehabilitation , Stroke Rehabilitation , Young Adult
6.
J Pak Med Assoc ; 69(9): 1337-1343, 2019 Sep.
Article in English | MEDLINE | ID: mdl-31511721

ABSTRACT

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.


Subject(s)
Activities of Daily Living , Community Integration , Social Participation , Spinal Cord Injuries/rehabilitation , Architectural Accessibility , Attitude , Community Participation , Economic Status , Humans , Mobility Limitation , Paraplegia/physiopathology , Paraplegia/psychology , Paraplegia/rehabilitation , Public Policy , Quadriplegia/physiopathology , Quadriplegia/psychology , Quadriplegia/rehabilitation , Spinal Cord Injuries/physiopathology , Spinal Cord Injuries/psychology
7.
Qual Life Res ; 27(11): 3003-3012, 2018 Nov.
Article in English | MEDLINE | ID: mdl-30073468

ABSTRACT

PURPOSE: This study investigated the most efficient means of measuring pain intensity and pain interference comparing ecological momentary assessment (EMA) to end of day (EOD) data, with the highest level of measurement reliability as examined in individuals with spinal cord injury. METHODS: EMA (five times throughout the day) and EOD ratings of pain and pain interference were collected over a 7-day period. Multilevel models were used to examine the reliability for both EOD and EMA assessments in order to determine the amount of variability in these assessments over the course of a week or the day, and a multilevel version of the Spearman-Brown Prophecy formula was used to estimate values for reliability. RESULTS: Findings indicate the minimum of number of EOD and EMA assessments needed to achieve different levels of reliability ("adequate" > 0.70, "good" > 0.80 and excellent > 0.90). In addition, the time of day (either morning, midday or evening) did not impact the estimated reliability for the EMA assessments. CONCLUSIONS: These findings can help researchers and clinician balance the cost/benefit tradeoffs of these different types of assessments by providing specific cutoffs for the numbers of each type of assessment that are needed to achieve excellent reliability.


Subject(s)
Ecological Momentary Assessment , Pain Measurement , Pain/psychology , Paraplegia/psychology , Quality of Life/psychology , Self Report , Spinal Cord Injuries/pathology , Adult , Female , Humans , Male , Middle Aged , Reproducibility of Results , Surveys and Questionnaires
8.
Arch Phys Med Rehabil ; 99(10): 2007-2014.e3, 2018 10.
Article in English | MEDLINE | ID: mdl-29981312

ABSTRACT

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.


Subject(s)
Paraplegia/psychology , Physical Fitness/psychology , Quadriplegia/psychology , Spinal Cord Injuries/psychology , Wheelchairs/psychology , Adult , Architectural Accessibility , Cross-Sectional Studies , Exercise Test , Female , Humans , Male , Middle Aged , Paraplegia/etiology , Paraplegia/rehabilitation , Perception , Quadriplegia/etiology , Quadriplegia/rehabilitation , Spinal Cord Injuries/complications , Spinal Cord Injuries/rehabilitation , Young Adult
9.
Spinal Cord ; 56(12): 1184-1193, 2018 12.
Article in English | MEDLINE | ID: mdl-29904190

ABSTRACT

STUDY DESIGN: This was a qualitative study conducted using an interpretative phenomenological approach. OBJECTIVES: This study investigated the experience of pregnancy and childbirth in women with spinal cord injury (SCI). SETTING: Brain and Spinal Cord Injury Research Center, Tehran University of Medical Sciences, Tehran, Iran. METHODS: The data were collected using telecommunication and face-to-face semi-structured interviews with eight women with SCI. The study employed the interpretative phenomenological approach suggested by Van Manen in 2016 and thematic analysis to provide a comprehensive understanding of the childbearing experience of women with SCI. MAXQDA 10 software was used to manage the collected data. RESULTS: Five main themes have emerged from data analysis: "revivification", "fear and concern of motherhood with SCI", "flawed health care system", "maternal experience under a supportive umbrella", and "strengthening spirituality and religious belief". CONCLUSION: Childbearing had a positive effect on the family relationship, continuity of marriage, and quality of life following SCI. There are potential benefits in establishing a center that provides consultation on childbearing and childcare for women with SCI. Moreover, training for the medical team, which includes nurses, midwives, and specialists is highly recommended. Further research is needed to expand our understanding of childbearing from the perspectives of healthcare providers.


Subject(s)
Mothers/psychology , Parturition/psychology , Spinal Cord Injuries/psychology , Adult , Female , Humans , Interviews as Topic , Iran , Maternal Health Services , Middle Aged , Paraplegia/etiology , Paraplegia/psychology , Pregnancy , Qualitative Research , Quality of Life , Spinal Cord Injuries/complications
10.
Spinal Cord ; 56(12): 1134-1143, 2018 12.
Article in English | MEDLINE | ID: mdl-29795169

ABSTRACT

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.


Subject(s)
Leisure Activities , Paraplegia/etiology , Quadriplegia/etiology , Spinal Cord Injuries/complications , Adult , Aged , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Netherlands , Paraplegia/psychology , Paraplegia/rehabilitation , Quadriplegia/psychology , Quadriplegia/rehabilitation , Spinal Cord Injuries/psychology , Spinal Cord Injuries/rehabilitation , Time Factors , Wheelchairs
11.
Spinal Cord ; 56(11): 1084-1094, 2018 Nov.
Article in English | MEDLINE | ID: mdl-30140048

ABSTRACT

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.


Subject(s)
Sexual Behavior/psychology , Spinal Cord Injuries/psychology , Adult , Aged , Cauda Equina Syndrome/etiology , Cauda Equina Syndrome/psychology , Cauda Equina Syndrome/rehabilitation , Cross-Sectional Studies , Female , Humans , Middle Aged , Paraplegia/etiology , Paraplegia/psychology , Paraplegia/rehabilitation , Quadriplegia/etiology , Quadriplegia/psychology , Quadriplegia/rehabilitation , Qualitative Research , Sexual Partners/psychology , Spinal Cord Injuries/complications , Spinal Cord Injuries/rehabilitation , Young Adult
12.
Spinal Cord ; 56(5): 436-446, 2018 05.
Article in English | MEDLINE | ID: mdl-29335472

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Cost of Illness , Spinal Cord Injuries/psychology , Adult , Cross-Sectional Studies , Emotions , Female , Follow-Up Studies , Humans , Male , Mental Health , Middle Aged , Paraplegia/etiology , Paraplegia/physiopathology , Paraplegia/psychology , Paraplegia/rehabilitation , Patient Discharge , Personal Satisfaction , Quadriplegia/etiology , Quadriplegia/physiopathology , Quadriplegia/psychology , Quadriplegia/rehabilitation , Self Report , Social Support , Spinal Cord Injuries/complications , Spinal Cord Injuries/physiopathology , Spinal Cord Injuries/rehabilitation
13.
Spinal Cord ; 56(5): 478-486, 2018 05.
Article in English | MEDLINE | ID: mdl-29339776

ABSTRACT

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.


Subject(s)
Activities of Daily Living , Muscle Spasticity/physiopathology , Spinal Cord Injuries/physiopathology , Cross-Sectional Studies , Drug Resistance , Humans , Muscle Spasticity/drug therapy , Muscle Spasticity/etiology , Muscle Spasticity/psychology , Neuromuscular Agents/therapeutic use , Pain/etiology , Pain/physiopathology , Pain/psychology , Paraplegia/etiology , Paraplegia/physiopathology , Paraplegia/psychology , Quadriplegia/etiology , Quadriplegia/physiopathology , Quadriplegia/psychology , Spinal Cord Injuries/complications , Spinal Cord Injuries/psychology , Surveys and Questionnaires
14.
Health Qual Life Outcomes ; 15(1): 22, 2017 Jan 25.
Article in English | MEDLINE | ID: mdl-28122621

ABSTRACT

BACKGROUND: Occupations, including physical activity, are a strong determinant of health. However, mobility limitations can restrict opportunities to perform these occupations, which may affect quality of life. Some people will turn to adapted sports to meet their need to be involved in occupations. Little is known, however, about how participation in adapted sports affects the quality of life of people with mobility limitations. This study thus aimed to explore the influence of adapted sports on quality of life in adult wheelchair users. METHODS: A mixed-method sequential explanatory design was used, including a quantitative and a qualitative component with a clinical research design. A total of 34 wheelchair users aged 18 to 62, who regularly played adapted sports, completed the Quality of Life Index (/30). Their scores were compared to those obtained by people of similar age without limitations (general population). Ten of the wheelchair users also participated in individual semi-structured interviews exploring their perceptions regarding how sports-related experiences affected their quality of life. RESULTS: The participants were 9 women and 25 men with paraplegia, the majority of whom worked and played an individual adapted sport (athletics, tennis or rugby) at the international or national level. People with mobility limitations who participated in adapted sports had a quality of life comparable to the group without limitations (21.9 ± 3.3 vs 22.3 ± 2.9 respectively), except for poorer family-related quality of life (21.0 ± 5.3 vs 24.1 ± 4.9 respectively). Based on the interviews, participants reported that the positive effect of adapted sports on the quality of life of people with mobility limitations operates mainly through the following: personal factors (behavior-related abilities and health), social participation (in general and through interpersonal relationships), and environmental factors (society's perceptions and support from the environment). Some contextual factors, such as resources and the accessibility of organizations and training facilities, are important and contributed indirectly to quality of life. Negative aspects, such as performance-related stress and injury, also have an effect. CONCLUSIONS: People with mobility limitations playing adapted sports and people without limitations have a similar quality of life. Participation in adapted sports was identified as having positive effects on self-esteem, self-efficacy, sense of belonging, participation in meaningful activities, society's attitude towards people with mobility limitations, and physical well-being. However, participants stated that this involvement, especially at higher levels, had a negative impact on their social life.


Subject(s)
Mobility Limitation , Paraplegia/psychology , Quality of Life/psychology , Sports for Persons with Disabilities/psychology , Wheelchairs/psychology , Adolescent , Adult , Athletic Injuries/psychology , Attitude , Environment , Evaluation Studies as Topic , Female , Humans , Male , Middle Aged , Paraplegia/rehabilitation , Qualitative Research , Social Participation , Social Support , Young Adult
15.
Artif Organs ; 41(11): E203-E212, 2017 Nov.
Article in English | MEDLINE | ID: mdl-29148129

ABSTRACT

Potentially, functional electrical stimulation (FES)-assisted exercise may have an important therapeutic role in reducing comorbidities associated with spinal cord injury (SCI). Here, we present an overview of these secondary life-threatening conditions, discuss the rationale behind the development of a hybrid exercise called FES rowing, and describe our experience in developing FES rowing technology. FES rowing and sculling are unique forms of adaptive rowing for those with SCI. The paralyzed leg musculature is activated by multiple channels of electrical pulses delivered via self-adhesive electrodes attached to the skin. The stimulated muscle contractions are synchronized with voluntary rowing movements of the upper limbs. A range of steady-state FES rowing exercise intensities have been demonstrated from 15.2 ± 1.8 mL/kg/min in tetraplegia to 22.9 ±7.1 mL/kg/min in paraplegia. We expect that such high levels may help some to achieve significant reductions in the risks to their health, particularly where a dose-response relationship exists as is the case for cardiovascular disease and Type II diabetes. Furthermore, preliminary results suggest that cyclical forces more than 1.5 times body weight are imposed on the leg long bones which may help to reduce the risk of fragility fractures. We have demonstrated the feasibility of FES rowing on land and water using adapted rowing technology that includes; a fixed stretcher indoor ergometer (adapted Concept 2, Model E), a floating stretcher indoor ergometer (adapted Concept 2 Dynamic), a turbine powered water rowing tank, a custom hydraulic sculling simulator and a single scull (adapted Alden 16). This has involved volunteers with paraplegia and tetraplegia with SCI ranging from C4 to T12 AIS A using at least 4-channels of surface electrical stimulation. FES rowers, with SCI, have competed alongside non-SCI rowers over the Olympic distance of 2000 m at the British Indoor Rowing Championships in 2004, 2005, and 2006 and the World Indoor Rowing Championships in 2006 (CRASH-B's) in Boston, MA, USA. The best 2000 m FES rowing performance to date has been achieved by a 23-year-old male, Tom Aggar T12 AIS A, in 10 min 28 s. Moreover, two of our FES rowers with complete paraplegia have gone on to successfully compete in the Adaptive Rowing arms-only category (AM1x) at the World Rowing Championships and Paralympic Games.


Subject(s)
Electric Stimulation Therapy/instrumentation , Exercise Therapy/instrumentation , Lower Extremity/innervation , Motor Activity , Paraplegia/rehabilitation , Quadriplegia/rehabilitation , Spinal Cord Injuries/rehabilitation , Upper Extremity/innervation , Adolescent , Adult , Biomechanical Phenomena , Competitive Behavior , Electric Stimulation Therapy/methods , Equipment Design , Exercise Therapy/methods , Humans , Male , Middle Aged , Paraplegia/diagnosis , Paraplegia/physiopathology , Paraplegia/psychology , Quadriplegia/diagnosis , Quadriplegia/physiopathology , Quadriplegia/psychology , Recovery of Function , Spinal Cord Injuries/diagnosis , Spinal Cord Injuries/physiopathology , Spinal Cord Injuries/psychology , Task Performance and Analysis , Time Factors , Treatment Outcome , Young Adult
16.
Spinal Cord ; 55(11): 1039-1044, 2017 Nov.
Article in English | MEDLINE | ID: mdl-28695903

ABSTRACT

STUDY DESIGN: Descriptive cross-sectional study. OBJECTIVES: To investigate the relationship between perceived social support and depression and to evaluate the role of family, friends and other caregivers in the perception of social support in Iranian individuals with spinal cord injury (SCI). SETTING: Brain and Spinal Cord Injury Research Center, Tehran University of Medical Sciences, Tehran, Iran. METHODS: Social support was evaluated using the Multidimensional Scale of Perceived Social Support questionnaire, which gauges perceptions of support from family, friends and 'important persons'. The presence and severity of depression were assessed with the Beck Depression Inventory (BDI-II-PERSIAN)-a 21-item multiple-choice questionnaire. RESULTS: A total of 140 individuals with SCI were enrolled in the study. The average age of the participants was 29.4±7.9 years; the mean duration of injury was 46.3±46.5 months and most patients were male (72%). Social support and all subscales of social support were numerically greater in males; however, this difference was not statistically significant. The subcategory of friends' support in men was 17.9±7.9 compared to 14.6±8.0 in women (P=0.04). The self-reported social support score (r=-0.387, P<0.001) and subscales of social support, including family (r=-0.174, P=0.045), friends (r=-0.356, P<0.001) and important persons (r=-0.373, P<0.001), were all negatively correlated with depression. CONCLUSION: Higher self-reported perception of social support appears to be associated with lower levels of depression in individuals with SCI. SCI care providers should consider the relationship between social support and depression in their continuing care.


Subject(s)
Depression/epidemiology , Social Support , Spinal Cord Injuries/epidemiology , Spinal Cord Injuries/psychology , Adult , Cross-Sectional Studies , Depression/etiology , Family , Female , Friends , Humans , Iran , Male , Paraplegia/epidemiology , Paraplegia/etiology , Paraplegia/psychology , Quadriplegia/epidemiology , Quadriplegia/etiology , Quadriplegia/psychology , Self Concept , Severity of Illness Index , Sex Factors , Socioeconomic Factors , Spinal Cord Injuries/complications
17.
J Tissue Viability ; 26(1): 69-74, 2017 Feb.
Article in English | MEDLINE | ID: mdl-27622272

ABSTRACT

INTRODUCTION: Little is known about health activation and self-management behavior in preventing pressure ulcers (PU) in paraplegic patients. Therefore this study aimed to describe the extent of health activation and self-management behavior in paraplegics to prevent PU's and associations between this behavior and patient characteristics. Furthermore, we aimed to find differences in health activation in paraplegics who never had a PU compared to paraplegics with a previous history of PU's or a new-onset PU's. METHODS: A cross-sectional survey on health activation and self-management behavior was conducted among adult paraplegics recruited from two rehabilitation centers in the Netherlands. The Patient Activation Measure (PAM-score) was used to measure the extent of health activation. Patient statements on their level of self management behavior to prevent PU were evaluated. RESULTS: The mean PAM-score (0-100) was 54 (±8.1; n = 162) indicating a low level of health activation. Two indicators turned out to be statistically significant associated with health activation: level of education (OR = 2.2, p = 0.017) and degree of paraplegia (OR = 2.8, p = 0.036). Evaluation of health activation levels amongst paraplegics with or without a PU- history showed no significant difference. Analysis of patients statements demonstrated a large discrepancy between intended and actual behavior to prevent pressure ulcers. CONCLUSION: Level of education and level of paraplegia are significantly associated with health activation. A positive PU-history is not associated with future responsible behavior nor for compliant behavior in terms of health management.


Subject(s)
Paraplegia/psychology , Patient Participation/psychology , Pressure Ulcer/prevention & control , Self-Management/psychology , Adult , Aged , Cross-Sectional Studies , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Paraplegia/complications , Patient Participation/statistics & numerical data , Pressure Ulcer/etiology , Pressure Ulcer/psychology , Self Report , Skin Care
18.
Arch Phys Med Rehabil ; 97(12): 2130-2136, 2016 12.
Article in English | MEDLINE | ID: mdl-27422349

ABSTRACT

OBJECTIVE: To improve the clinical utility of the Moorong Self-Efficacy Scale (MSES) by reexamining its factor structure and comparing its performance against a measure of general self-efficacy in persons with spinal cord injury (SCI). DESIGN: Cross-sectional survey design. SETTING: Community. PARTICIPANTS: Adults with SCI (N=161; 118 men and 43 women) recruited from Australia (n=82) and the United States (n=79), including 86 with paraplegia and 75 with tetraplegia. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Confirmatory factor analysis deriving fit indices on reported 1-, 2-, and 3-factor structures for the MSES. Exploratory factor analysis of MSES using principal component analysis with promax oblique rotation and structure validation, with correlations and multiple regression using cross-sectional data from the Sherer General Self-Efficacy Scale and Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36). RESULTS: The MSES was confirmed to have a 3-factor structure, explaining 61% of variance. Two of the factors, labeled social function self-efficacy and personal function self-efficacy, were SCI condition-specific, whereas the other factor (accounting for 9.7% of variance) represented general self-efficacy, correlating most strongly with the Sherer General Self-Efficacy Scale. Correlations and multiple regression analyses between MSES factors, Sherer General Self-Efficacy Scale total score, SF-36 Physical and Mental Component Summary scores, and SF-36 domain scores support validity of this MSES factor structure. No significant cross-cultural differences existed between Australia and the United States in total MSES or factor scores. CONCLUSIONS: The findings support a 3-factor structure encompassing general and SCI domain-specific self-efficacy beliefs and better position the MSES to assist SCI rehabilitation assessment, planning, and research.


Subject(s)
Paraplegia/psychology , Quadriplegia/psychology , Quality of Life , Spinal Cord Injuries/psychology , Activities of Daily Living , Adolescent , Adult , Aged , Cross-Sectional Studies , Disability Evaluation , Factor Analysis, Statistical , Female , Humans , Interpersonal Relations , Male , Middle Aged , Paraplegia/etiology , Paraplegia/rehabilitation , Psychometrics , Quadriplegia/etiology , Quadriplegia/rehabilitation , Reproducibility of Results , Self Efficacy , Socioeconomic Factors , Spinal Cord Injuries/complications , Spinal Cord Injuries/rehabilitation , Young Adult
19.
Arch Phys Med Rehabil ; 96(4): 750-3, 2015 Apr.
Article in English | MEDLINE | ID: mdl-25461820

ABSTRACT

OBJECTIVE: To determine the location of cortical activation during a visual illusion walking paradigm, a recently proposed treatment for spinal cord injury (SCI)-related neuropathic pain, in persons with SCI compared with able-bodied controls. DESIGN: Pilot experimental functional magnetic resonance imaging (fMRI) trial. SETTING: Outpatient rehabilitation clinic. PARTICIPANTS: Persons with paraplegia (n=3) and able-bodied participants (n=5) were included in this study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Cortical activation as measured by the blood oxygenation level-dependent method of fMRI. RESULTS: During visually illusory walking there was significant activation in the somatosensory cortex among those with SCI. In contrast, able-bodied participants showed little to no significant activation in this area, but they showed activation in the frontal and premotor areas. CONCLUSIONS: Treatment modalities for SCI-related neuropathic pain that are based on sensory input paradigms (eg, virtual walking, visual illusory walking) may work by targeting the somatosensory cortex, an area that has been previously found to functionally reorganize after SCI.


Subject(s)
Neuralgia/rehabilitation , Paraplegia/rehabilitation , Somatosensory Cortex/physiology , Spinal Cord Injuries/rehabilitation , Walking/physiology , Walking/psychology , Adult , Cerebral Cortex/physiology , Female , Humans , Magnetic Resonance Imaging , Male , Neuralgia/physiopathology , Neuralgia/psychology , Pain Measurement , Paraplegia/physiopathology , Paraplegia/psychology , Pilot Projects
20.
Spinal Cord ; 53(9): 687-91, 2015 Sep.
Article in English | MEDLINE | ID: mdl-25777329

ABSTRACT

STUDY DESIGN: Each participant performed a series of wheelchair exercises equivalent in intensity to minimal functional speed (1 m s(-1)), functional walking speed (1.3 m s(-1)), a relatively challenging speed (1.6 m s(-1)) and a self-selected speed. Each participant also completed a graded exercise test (GXT) to volitional exhaustion (VO2peak). OBJECTIVES: The purpose of this study was (1) to assess the physical capacity of wheelchair users as they undertake typical mobility activities and (2) to investigate how closely the components of a differentiated model of perceived exertion mirror wheelchair users' own perception of exertion. METHODS: Eleven (eight males and three females) spinal cord-injured or congenitally impaired wheelchair-dependent participants volunteered for the study. Differentiated ratings of perceived exertion (RPE_arm and RPE_respiration) and oxygen uptake (VO2) and heart rate were recorded during each exercise. RESULTS: The mean comfortable speed at which the participants propelled their own wheelchairs on the wheelchair ergometer was 1.1±0.2 m s(-1). Speeds of 1 m s(-1) and 1.3 m s(-1) are typical of everyday functional propulsion. The corresponding RPE_respiration and RPE_arm ranged from 7 to 13 on the Borg scale; the %VO2peak measured in these trials ranged from 37 to 80% VO2peak. For propulsion intensities used in the present study-low, moderate, high and graded exercise intensity-no difference could be observed between RPE_respiration and RPE_arm. There were no significant differences between RPE_arm and RPE_respiration at the termination of the GXT. CONCLUSION: The current study showed potential for the use of RPE to assess and monitor daily wheelchair propulsion intensity in individuals with paraplegia.


Subject(s)
Locomotion , Perception , Physical Exertion , Spinal Cord Injuries/psychology , Wheelchairs , Adult , Exercise Test , Fatigue/physiopathology , Fatigue/psychology , Female , Heart Rate , Humans , Locomotion/physiology , Lumbar Vertebrae , Male , Middle Aged , Oxygen Consumption , Paraplegia/physiopathology , Paraplegia/psychology , Physical Exertion/physiology , Physical Fitness/physiology , Physical Fitness/psychology , Spinal Cord Injuries/physiopathology , Thoracic Vertebrae
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