A behavioural intervention increases physical activity in people with subacute spinal cord injury: a randomised trial.

QUESTIONS: For people with subacute spinal cord injury, does rehabilitation that is reinforced with the addition of a behavioural intervention to promote physical activity lead to a more active lifestyle than rehabilitation alone? DESIGN: Randomised, controlled trial with concealed allocation, intention-to-treat analysis, and blinded assessors. PARTICIPANTS: Forty-five adults with subacute spinal cord injury who were undergoing inpatient rehabilitation and were dependent on a manual wheelchair. The spinal cord injuries were characterised as: tetraplegia 33%; motor complete 62%; mean time since injury 150 days (SD 74). INTERVENTION: All participants received regular rehabilitation, including handcycle training. Only the experimental group received a behavioural intervention promoting an active lifestyle after discharge. This intervention involved 13 individual sessions delivered by a coach who was trained in motivational interviewing; it began 2 months before and ended 6 months after discharge from inpatient rehabilitation. OUTCOME MEASURES: The primary outcome was physical activity, which was objectively measured with an accelerometer-based activity monitor 2 months before discharge, at discharge, and 6 and 12 months after discharge from inpatient rehabilitation. The accelerometry data were analysed as total wheeled physical activity, sedentary time and motility. Self-reported physical activity was a secondary outcome. RESULTS: The behavioural intervention significantly increased wheeled physical activity (overall between-group difference from generalised estimating equation 21minutes per day, 95% CI 8 to 35). This difference was evident 6 months after discharge (28minutes per day, 95% CI 8 to 48) and maintained at 12 months after discharge (25minutes per day, 95% CI 1 to 50). No significant intervention effect was found for sedentary time or motility. Self-reported physical activity also significantly improved. CONCLUSION: The behavioural intervention was effective in eliciting a behavioural change toward a more active lifestyle among people with subacute spinal cord injury. TRIAL REGISTRATION: NTR2424.

Quality of life of adult men with Duchenne muscular dystrophy in the Netherlands: implications for care.

OBJECTIVE: To assess quality of life of adults with Duchenne muscular dystrophy in the Netherlands and to identify domains and major problems influencing quality of life. DESIGN: Cross-sectional. SUBJECTS: Seventy-nine men aged ≥ 20 years with Duchenne muscular dystrophy. METHODS: The Medical Outcome Study Short Form-36 (SF-36), World Health Organization Quality of Life - BREF (WHOQOL-BREF) and an interview were used to assess quality of life and problems. RESULTS: Compared with Dutch general population reference values, the SF-36 domains scores were lower on all domains except mental health and role limitations due to emotional problems. On the WHOQOL-BREF the social relationships domain score was lower. Main problems were intimate relationships, work, leisure, transport and meaningfulness of life. Seventy-three percent stated overall quality of life as "(very) good". The SF-36 domains mental health (rs 0.53, p < 0.001) and vitality (rs 0.49, p < 0.001) had the strongest associations with overall quality of life. CONCLUSION: Adult men with Duchenne muscular dystrophy assess their health status as low in the physical, but not in the mental, domains. Experienced problems are mainly in the area of participation. They are generally satisfied with their overall quality of life.

Resistive inspiratory muscle training in people with spinal cord injury during inpatient rehabilitation: a randomized controlled trial.

BACKGROUND: People with spinal cord injury (SCI) may benefit from resistive inspiratory muscle training (RIMT). Current evidence is weak, and little is known about the effect on functional outcomes and long-term effects. OBJECTIVE: The purpose of this study was to assess immediate and long-term effects of RIMT in people with SCI. DESIGN: This was a single-blinded randomized controlled trial. SETTING: The study was conducted at 4 specialized SCI units in the Netherlands. PATIENTS: The study participants were 40 people with SCI (15 with motor complete tetraplegia, 16 with incomplete tetraplegia, 8 with motor complete paraplegia, and 1 with incomplete paraplegia) who had impaired pulmonary function and were admitted for initial inpatient rehabilitation. INTERVENTION: Study participants were randomized to an RIMT group or a control group. All participants received usual rehabilitation care. In addition, participants in the intervention group performed RIMT with a threshold trainer. MEASUREMENTS: Measurements were performed at baseline, after 8 weeks of intervention, 8 weeks later, and 1 year after discharge from inpatient rehabilitation. Primary outcome measures were: respiratory muscle function, lung volumes and flows, and perceived respiratory function. Secondary outcome measures concerned patient functioning, which included health-related quality of life, limitations in daily life due to respiratory problems, and respiratory complications. RESULTS: During the intervention period, maximum inspiratory pressure (MIP) improved more in the RIMT group than in the control group (11.7 cm H2O, 95% confidence interval=4.3 to 19.0). At follow-up, this effect was no longer significant. No effect on other primary or secondary outcome measures was found except for an immediate effect on mental health. LIMITATIONS: The sample size was insufficient to study effects on respiratory complications. CONCLUSIONS: Resistive inspiratory muscle training has a positive short-term effect on inspiratory muscle function in people with SCI who have impaired pulmonary function during inpatient rehabilitation.

Cardiovascular disease risk in adults with spastic bilateral cerebral palsy.

OBJECTIVE: To explore: (i) cardiovascular disease risk factors and the 10-year clustered risk of a fatal cardiovascular event in adults with spastic bilateral cerebral palsy; and (ii) relationships between the 10-year risk and body fat, aerobic fitness and physical activity. DESIGN: Cross-sectional study. SUBJECTS: Forty-three adults with spastic bilateral cerebral palsy without severe cognitive impairment (mean age 36.6 years (standard deviation 6); 27 men). METHODS: Biological and lifestyle-related risk factors and the 10-year risk according to the Systematic Coronary Risk Evaluation (SCORE) were assessed. Relationships were studied using multivariable linear regression analysis. RESULTS: The following single risk factors were present: hypertension (n = 12), elevated total cholesterol (n = 3), low high-density lipoprotein cholesterol (n = 5; all men), high-risk waist circumference (n = 11), obesity (body mass index; n = 5; all men), reduced aerobic fitness (on average 80% of reference values), reduced level of everyday physical activity (on average 78% of reference values) and smoking (n=9). All participants had a 10-year risk <1%. Corrected for gender, participants with higher waist circumference (ß = 0.28; p = 0.06) or body mass index (ß=0.25; p = 0.08) tended to have a higher 10-year risk. CONCLUSION: In this relatively young adult sample of people with spastic bilateral cerebral palsy several single cardiovascular disease risk factors were present. The 10-year fatal cardiovascular disease risk was low, and higher body fat tended to be related to higher 10-year risk.

Exercise self-efficacy in persons with spinal cord injury: psychometric properties of the Dutch translation of the Exercise Self-Efficacy Scale.

OBJECTIVE: To assess the reliability and validity of the Dutch version of the exercise self-efficacy scale (ESES) in persons with spinal cord injury. This is the first independent study of ESES psychometric properties, and the first report on ESES test-retest reliability. SUBJECTS/PATIENTS: A total of 53 Dutch persons with spinal cord injury. METHODS: Subjects completed the Dutch ESES twice, with 2 weeks between (ESES_1 and ESES_2). Subjects also completed the General self-efficacy scale (GSE), and a questionnaire regarding demographic characteristics and lesion characteristics. Psychometric properties of the Dutch translation of the ESES were assessed and compared with those of the original English-language version. RESULTS: The Dutch ESES was found to have good internal consistency (Cronbach's α for ESES_1 = 0.90, ESES_2 = 0.88). Test-retest reliability was adequate (intra-class correlation coefficient = 0.81, 95% confidence interval 0.70-0.89). For validity, a moderate, statistically significant correlation was found between ESES and the GSE (Spearman's ρ ESES_1 = 0.52, ESES_2 = 0.66, p < 0.01). Furthermore, the psychometric properties of the Dutch ESES were found to be similar to those of the original English version. CONCLUSION: The results of this study support the use of the ESES as a reliable and valid measure of exercise self-efficacy.

Changes in pulmonary function during the early years after inpatient rehabilitation in persons with spinal cord injury: a prospective cohort study.

OBJECTIVE: To describe changes in pulmonary function (PF) during the 5 years after inpatient rehabilitation in persons with spinal cord injury (SCI) and to study potential determinants of change. DESIGN: Prospective cohort study. SETTING: Eight rehabilitation centers with specialized SCI units. PARTICIPANTS: Persons with SCI (N=180). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: PF was determined by forced vital capacity (FVC) and forced expiratory volume in 1 second (FEV1) as a percentage of the predicted value, at the start of rehabilitation, at discharge, and 1 and 5 years after discharge from inpatient rehabilitation. The population was divided into 3 subgroups on the basis of whether their PF declined, stabilized, or improved. RESULTS: FVC improved on average 5.1% over the whole period between discharge of inpatient rehabilitation and 5 years thereafter, but changes differed largely between persons. FVC declined in 14.9% of the population during the first year after discharge. During this year, body mass index, inspiratory muscle strength, change in peak power output, and change in peak oxygen uptake differed significantly between subgroups. FVC declined in 28.3% of the population during the following 4 years, but no differences were found between the subgroups for this period. Subgroups based on changes in FEV1 differed only with respect to change in peak oxygen uptake the first year after discharge. CONCLUSIONS: In our study, many persons with SCI showed a decline in PF, larger than the normal age-related decline, during the 5 years after inpatient rehabilitation. Results suggest that a decline in PF during the first year after inpatient rehabilitation is associated with higher body mass index, lower inspiratory muscle strength, and declined physical fitness.

Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy.

AIM: To investigate the prevalence and co-occurrence of chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy (SBCP) and explore associations of chronic pain and fatigue with depressive symptoms and daily functioning. METHOD: Fifty-six adults with SBCP without severe cognitive impairment participated (35 males, 21 females; mean age 36y 5mo, SD 5y 10mo; Gross Motor Function Classification System level I [13], II [28], III [11], IV [4]). Chronic pain (>3mo), severity and nature of fatigue (Fatigue Severity Scale; Multidimensional Fatigue Inventory), and depressive symptoms (Center for Epidemiological Studies Depression Scale) were assessed. Associations were explored using multivariable logistic regression analyses. RESULTS: The study sample had a higher prevalence of chronic pain (75% vs 39%; p<0.001), mean fatigue (Fatigue Severity Scale, 4.4 [SD 1.3] vs 2.9 [SD 1.1]; p<0.001), and prevalence of depressive symptoms (25% vs 12%; p=0.004) than Dutch healthy reference samples. Chronic pain and severe fatigue co-occurred in 34% and in combination with depressive symptoms in 16% of the participants. Severity of fatigue was associated with depressive symptoms (OR 3.38; p<0.01). Chronic pain and fatigue were not associated with limitations in daily functioning. INTERPRETATION: These findings suggest that adults with SBCP are severely affected by chronic pain, fatigue, and depressive symptoms, in addition to their spastic paresis.

Upper limb function in adults with Duchenne muscular dystrophy.

OBJECTIVE: To determine upper limb function and associated factors in adults with Duchenne muscular dystrophy. DESIGN: Cross-sectional study. SUBJECTS: A sample of 70 men with Duchenne muscular dystrophy (age range 20-43 years). METHODS: General motor function and, in particular, upper limb distal motor function, were assessed with the Motor Function Measure. Muscle strength and range of motion of the upper limb were evaluated using hand-held dynamo-metry, manual muscle-testing and goniometry. Associations were studied using Spearman's correlation coefficients and multiple linear regression analysis. RESULTS: General motor function was severely impaired. Wide variability was found in distal motor function, muscle strength and range of motion of the upper limb, especially in early adulthood. Muscle strength and range of motion explained 76% of the variance in upper limb distal motor function. CONCLUSION: This study illustrates a large variability in upper limb function in adult patients with Duchenne muscular dystrophy, and identifies muscle strength and range of motion as factors strongly associated with upper limb function. These results suggest that preserving muscle strength and range of motion in Duchenne patients might be relevant for a better outcome of distal motor function of the upper limb when adult.

Validation of the Physical Activity Scale for individuals with physical disabilities.

OBJECTIVE: To determine the criterion validity of the Physical Activity Scale for Individuals With Physical Disabilities (PASIPD) by means of daily physical activity levels measured by using a validated accelerometry-based activity monitor in a large group of persons with a physical disability. DESIGN: Cross-sectional. SETTING: Participants' home environment. PARTICIPANTS: Ambulatory and nonambulatory persons with cerebral palsy, meningomyelocele, or spinal cord injury (N=124). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Self-reported physical activity level measured by using the PASIPD, a 2-day recall questionnaire, was correlated to objectively measured physical activity level measured by using a validated accelerometry-based activity monitor. RESULTS: Significant Spearman correlation coefficients between the PASIPD and activity monitor outcome measures ranged from .22 to .37. The PASIPD overestimated the duration of physical activity measured by using the activity monitor (mean ± SD, 3.9±2.9 vs 1.5±0.9h/d; P<.01). Significant correlation (ρ=-.74; P<.01) was found between average number of hours of physical activity per day measured by using the 2 methods and difference in hours between methods. This indicates larger overestimation for persons with higher activity levels. CONCLUSIONS: The PASIPD correlated poorly with objective measurements using an accelerometry-based activity monitor in people with a physical disability. However, similar low correlations between objective and subjective activity measurements have been found in the general population. Users of the PASIPD should be cautious about overestimating physical activity levels.

Predicting respiratory infection one year after inpatient rehabilitation with pulmonary function measured at discharge in persons with spinal cord injury.

OBJECTIVE: To determine whether pulmonary function at discharge from inpatient rehabilitation can predict respiratory infection in spinal cord injury in the first year after discharge, and to determine which pulmonary function parameter predicts best. DESIGN: Multicentre prospective cohort study. SUBJECTS: A total of 140 persons with spinal cord injury. METHODS: Pulmonary function was tested at discharge from inpatient rehabilitation. Pulmonary function parameters (expressed in absolute and percentage predicted values) were: forced vital capacity, forced expiratory volume in 1 sec, and peak expiratory flow. Respiratory infection was determined one year after discharge by a physician. Differences between the respiratory infection and non-respiratory infection groups were tested; and receiver operating characteristic curves were used to determine how accurately pulmonary function parameters could predict respiratory infection. RESULTS: Of the 140 participants, 14 (10%) experienced respiratory infection in the first year after discharge. All pulmonary function parameters were significantly lower in persons who experienced respiratory infection than in those who did not. All pulmonary function parameters were almost equally accurate in predicting respiratory infection; only percentage predicted forced vital capacity was less accurate. CONCLUSION: Pulmonary function at discharge from inpatient rehabilitation can be used as a predictor of respiratory infection in the first year after discharge in spinal cord injury. No single pulmonary function parameter was a clearly superior predictor of respiratory infection.

A prospective study on physical activity levels after spinal cord injury during inpatient rehabilitation and the year after discharge.

OBJECTIVES: To assess the change over time in the physical activity level after a spinal cord injury (SCI), to explore its determinants, and to compare the physical activity level 1 year after discharge from the rehabilitation center with the level in able-bodied persons. DESIGN: Prospective cohort study. Measurements were obtained at the start of active rehabilitation, 3 months later, at discharge, 2 months after discharge, and 1 year after discharge. SETTING: Rehabilitation center in The Netherlands and the participant's home. PARTICIPANTS: Persons (n=40) with SCI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The physical activity level, as indicated by the duration of dynamic activities (ie, wheelchair driving, walking, cycling, noncyclic movement) per day, and the intensity of everyday activity; both were measured with an accelerometry-based activity monitor during 2 consecutive weekdays. RESULTS: Random coefficient analyses showed that the duration of dynamic activities and the intensity of everyday activity increased during inpatient rehabilitation at rates of 41% and 19%, respectively (P<.01). Shortly after discharge, there was a strong decline (33%; P<.001) in the duration of dynamic activities. One year after discharge, this decline was restored to the discharge level but was low in comparison with levels in able-bodied persons. The level of lesion and completeness of lesion were determinants of the change in the physical activity level after discharge. CONCLUSIONS: The physical activity level increased during inpatient rehabilitation, but this increase did not continue after discharge, and the level 1 year after discharge was distinctly lower than the level in able-bodied persons. Subpopulations had a different change over time in the physical activity level after discharge.

Functional independence and health-related functional status following spinal cord injury: a prospective study of the association with physical capacity.

OBJECTIVE: To determine changes in functional independence following spinal cord injury and to evaluate the association between functional independence and physical capacity. DESIGN: Multi-centre prospective cohort study. SUBJECTS: Patients with spinal cord injury admitted for initial rehabilitation. METHODS: The motor Functional Independence Measure (FIMmotor) was determined at the start of rehabilitation (n = 176), 3 months later (n = 124), at discharge (n = 160) and one year after discharge from inpatient rehabilitation (n = 133). One year after discharge, physical and social dimensions of health-related functional status (Sickness Impact Profile 68; SIP68) were determined. On each occasion, physical capacity was established by measuring arm muscle strength, peak power output and peak oxygen uptake. RESULTS: Multi-level random coefficient analyses revealed that FIMmotor improved during inpatient rehabilitation, but stabilized thereafter. Changes in FIMmotor were associated with peak power output. Multiple regression models showed that FIMmotor and peak power output at discharge were associated with FIMmotor one year after discharge (R2 = 0.85), and that peak power output at discharge was associated with the social dimension of the SIP68 (R2 = 0.18) one year after discharge. CONCLUSION: Functional independence improves during inpatient rehabilitation, and functional independence is positively associated with peak power output.

Prognostic models for physical capacity at discharge and 1 year postdischarge from rehabilitation in persons with spinal cord injury.

OBJECTIVE: To develop prognostic models for physical capacity at discharge and 1 year after discharge from inpatient rehabilitation in persons with spinal cord injury (SCI). DESIGN: Inception cohort; data collected at start of rehabilitation (n=104), at discharge (n=81), and 1 year later (n=74). SETTING: Eight Dutch rehabilitation centers. PARTICIPANTS: Patients with SCI at initial rehabilitation. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Physical capacity determined by endurance capacity (peak oxygen uptake [VO2peak, in L/min] and power output [POpeak, in watts]) during a maximal exercise test, arm muscle strength, and respiratory function. Multiple regression models, either with or without prior outcome, evaluated subject, lifestyle, and lesion-related predictors. RESULTS: Only start VO2peak contributed to the prediction of discharge VO2peak (R2=.51). Discharge VO2peak contributed to its prediction 1 year later (R2=.75). Start POpeak, sex, age, and level of lesion contributed to discharge POpeak (R2=.73). Discharge POpeak, hours of employment before injury, and level of lesion contributed to POpeak 1 year later (R2=.81). Models without prior outcome explained less variance. Education, employment, body mass index, not smoking, and conservative stabilization of the spine positively contributed to endurance capacity. Muscle strength was well predicted (R2 range, .68-.84). Without prior outcome, respiratory function was poorly predicted. CONCLUSIONS: Because prior outcome contributed to an accurate prediction, the early assessment of physical capacity is important in establishing prognoses. Although their accuracy warrants caution in their application, models could complement clinical expertise when informing patients about expected physical outcome and identifying those at risk of low physical capacity.

Complications following spinal cord injury: occurrence and risk factors in a longitudinal study during and after inpatient rehabilitation.

OBJECTIVE: To assess the occurrence and risk factors for complications following spinal cord injury during and after inpatient rehabilitation. DESIGN: Multicentre longitudinal study. SUBJECTS: A total of 212 persons with a spinal cord injury admitted to specialized rehabilitation centres. METHODS: Assessments at the start of active rehabilitation (n=212), 3 months later (n=143), at discharge (n=191) and 1 year after discharge (n=143). RESULTS: Multi-level random coefficient analyses revealed that complications were common following spinal cord injury. Most subjects reported neurogenic and musculoskeletal pain, or had spasticity at each assessment. During the year after discharge, complications remained common: urinary tract infections and pressure sores affected 49% and 36% of the population, respectively. The degree of pain decreased, whereas the degree of spasticity increased significantly during inpatient rehabilitation. Overall, increased age, increased body mass index, traumatic lesion, tetraplegia, and complete lesion all increased the risk of complications. CONCLUSION: Complications are common following spinal cord injury. They need specific attention after discharge from inpatient rehabilitation and within subpopulations.

Changes in physical capacity during and after inpatient rehabilitation in subjects with a spinal cord injury.

OBJECTIVE: To assess changes in physical capacity and its determinants in persons with a spinal cord injury. DESIGN: Prospective cohort study. Measurements at the start of active rehabilitation (t1), 3 months later (t2), at discharge (t3), and 1 year after discharge (t4). SETTING: Eight rehabilitation centers in The Netherlands. PARTICIPANTS: A total of 186 subjects at t1 and 123 subjects at t4. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Peak aerobic power output (POpeak), peak oxygen uptake (V(O2)peak), muscle strength of the upper extremity (manual muscle test, handheld dynamometry), and respiratory function (forced expiratory flow per second, forced vital capacity). RESULTS: Random coefficient analysis demonstrated that the POpeak, V(O2)peak, strength, and respiratory function improved during inpatient rehabilitation, and that V(O2)peak, strength, and respiratory function continued to improve after discharge. Age, sex, and level and completeness of lesion were determinants of the change in components of physical capacity. CONCLUSIONS: Physical capacity improves during inpatient rehabilitation, and some components continue to improve after discharge. Subpopulations have a different level of (change in) physical capacity. The components of physical capacity are related; intervention studies are needed to confirm whether training 1 component could improve another component.