AimsThe Multiple Sclerosis Intimacy and Sexuality Questionnaire (MSISQ‐15) evaluates symptoms of sexual dysfunction in patients with multiple sclerosis (MS). The objective of this study was to provide and validate a Dutch version of the MSISQ‐15 in patients with neurological disease such as MS and spinal cord injury (SCI).MethodsThe linguistic validation process of the original English MSISQ‐15 into Dutch was performed according to standardized guidelines. Sexually active patients with MS or spinal cord disorders, including SCI and cauda equine syndrome, who visited a tertiary urology center or a rehabilitation center completed the MSISQ‐15, Pelvic Organ Prolapse/Urinary Incontinence Sexual Questionnaire (PISQ‐12) in women, or International Index of Erection Function (IIEF‐15) in men at baseline (test) and 2 weeks later (retest). A reference group recruited from a general medical practice completed the questionnaires once. Data were analyzed for measurement properties.ResultsFifty‐three patients with MS, 49 patients with spinal cord disorder, and 50 references were included. Content validity was adequate. Internal consistency (Cronbach's alpha >0.8) and reproducibility (intraclass correlation coefficient >0.8) of the MSISQ‐15 were excellent. Patients’ MSISQ‐15 scores were correlated with severity of symptoms of sexual dysfunction measured by PISQ‐12 or IIEF‐15 and confirmed positive rating for criterion validity. MSISQ‐15 scores in patients were higher than in references (on a scale of 15‐75: 38.9 ± 11.4 vs 21.1 ± 5.4; P < 0.001), indicating good construct validity.ConclusionsThe Dutch MSISQ‐15 is a reliable and valid measure to evaluate symptoms of sexual dysfunction in patients with MS or with SCI.

Hypothesis / aims of study Optimizing the patients’ quality of life is one of the main goals in the urological management of Multiple Sclerosis (MS) and spinal cord injury (SCI) patients. Therefore, it is essential for healthcare professionals to know patients’ present urinary-specific quality of life. The SF-Qualiveen is a short questionnaire that measures the urinary-specific quality of life of patients with urological dysfunction due to neurological disorders. The aim of this study is to translate, culturally adapt and validate a Dutch version of the SF-Qualiveen for use in MS and SCI patients.

Objective: To assess, for people with subacute spinal cord injury, if rehabilitation that is reinforced with the addition of a behavioral intervention to promote physical activity leads to a better health, participation and quality of life. Design: Randomized controlled trial. Setting: Rehabilitation centers. Participants: A total of 39 participants analyzed (45 included), with subacute spinal cord injury in inpatient rehabilitation, dependent on a manual wheelchair (33% tetraplegia, 62% motor complete, 150 ±74 days postinjury). Intervention: A behavioral intervention promoting physical activity after discharge, involving 13 individual sessions delivered by a coach trained in motivational interviewing, beginning two months before and ending six months after discharge from inpatient rehabilitation. Main measures: Physical capacity as determined during a maximal exercise test, body mass index, blood pressure, fasting lipid profile, and social participation (IMPACT-S) and quality of life (SF-36) were determined using questionnaires. Measurements were performed two months before discharge, at discharge, and six and 12 months after discharge from inpatient rehabilitation. B represents the between-group difference. Results: Twelve months after discharge, significant intervention effects were found for diastolic blood pressure (B = –11.35 mmHg, 95% CI = –19.98 to −2.71), total cholesterol (B = –0.89 mmol/L, 95% CI = –1.59 to −0.20), low-density lipoprotein cholesterol (B = −0.63 mmol/L, 95% CI = –1.25 to −0.00) and participation (B = 9.91, 95% CI = 3.34 to 16.48). Conclusions: A behavioral intervention promoting physical activity after discharge from inpatient rehabilitation improves social participation and seems to reduce risk factors for cardiovascular disease in people with subacute spinal cord injury.

OBJECTIVE In order to unravel the working mechanisms that underlie the effectiveness of a behavioural intervention promoting physical activity in persons with subacute spinal cord injury, the aim of this study was to assess the mediating effects of physical and psychosocial factors on the intervention effect on physical activity. DESIGN Randomized controlled trial. SETTING Four rehabilitation centres in the Netherlands. SUBJECTS Thirty-nine persons with subacute spinal cord injury. INTERVENTION Behavioural intervention promoting an active lifestyle, based on motivational interviewing. The intervention involved a total of 13 individual sessions beginning 2 months before and ending 6 months after discharge from initial inpatient rehabilitation. MAIN MEASURES The potential mediating effects of fatigue, pain, depression, illness cognition, exercise self-efficacy, coping and social support on the effect of the behavioural intervention on objectively measured physical activity (B = 0.35 h, p < 0.01) were studied. Measurements were performed at baseline, discharge, 6 months and 1 year after discharge. RESULTS No single factor was found that strongly mediated the effect of the behavioural intervention on physical activity; however, multiple factors could partly explain the effect. Mediating effects greater than 10% were found for proactive coping (17.6%), exercise self-efficacy (15.9%), pain disability (15.3%) and helplessness (12.5%). DISCUSSION Proactive coping (the ability to anticipate and deal with potential threats before they occur), exercise self-efficacy (self-confidence with respect to performing exercise and daily physical activities), pain disability (interference by pain of daily activities) and helplessness (emphasizing the aversive meaning of the disease) are important concepts in interventions promoting physical activity in persons with subacute spinal cord injury.

Objective: To assess the longitudinal association between respiratory muscle strength and cough capacity in persons with recent spinal cord injury.Design: Longitudinal analyses.Subjects: Forty persons with recent spinal cord injury and impaired pulmonary function.Methods: Measurements were performed 4 weeks after the start of rehabilitation, 9 and 17 weeks after the first measurement, and one year after discharge from inpatient rehabilitation. Peak cough flow was measured with a spirometer. Maximum inspiratory and expiratory pressures (MIP and MEP), expressed in cmH(2)O, were measured at the mouth.Results: Both MIP and MEP were significantly positively associated with peak cough flow. After correction for confounders and time 10 cmH(2)O higher MIP was associated with a 0.32 Us higher peak cough flow, and a 10 cmH(2)O higher MEP was associated with a 0.15 l/s higher peak cough flow. The association between MIP and peak cough flow was mainly based on within-subject variance. The association between MIP and peak cough flow was stronger than between MEP and peak cough flow.Conclusion: Improvement in respiratory muscle strength is associated with improvement in cough capacity in persons with recent spinal cord injury who have impaired pulmonary function.

Since physical activity and exercise levels are known to be generally low in persons with spinal cord injury (SCI), there seems to be a need for intervention. Exercise self-efficacy (ESE), the confidence persons have in their ability to be physically active and exercise, is an important and modifiable predictor of physical behavior. The goal of this study was to 1) describe ESE in persons with subacute SCI, 2) to assess ESE in subgroups based on demographic and lesion characteristics, and 3) to explore the relation between ESE and physical behavior and physical capacity.

Citation for published version (APA): Postma, K., Vlemmix, L. Y., Haisma, J. A., de Groot, S., Sluis, T. A. R., Stam, H. J., & Bussmann, J. B. J. (2015). Longitudinal association between respiratory muscle strength and cough capacity in persons with spinal cord injury:: An explorative analysis of data from a randomized controlled trial. Journal of Rehabilitation Medicine, 47(8), 722-726. DOI: 10.2340/16501977-1986

Objectives: One of the explanations for the difference between health state utilities elicited from patients and the public—often provided but seldom studied—is adaptation. The influence of adaptation on utilities was investigated in patients with spinal cord injury. Methods: Interviews were held at 3 time points (T1, after admission to the rehabilitation center; T2, during active rehabilitation; T3, at least half a year after discharge). At T1, 60 patients were interviewed; 10 patients withdrew at T2 and T3. At all time points, patients were asked to value their own health and a health state description of rheumatoid arthritis on a time trade-off and a visual analogue scale. The Barthel Index, a measure of independence from help in activities of daily living, and the adjustment ladder were filled out. Main analyses were performed using mixed linear models taking the time-dependent covariates (Barthel Index and adjustment ladder) into account. Results: Time trade-off valuations for patients’ own health changed over time, even after correction for gain in independence from help in activities of daily living, F(2, 59) = 8.86, P < 0.001. This change was related to overall adaptation. Both a main effect for adaptation, F(87, 1) = 10.05; P = 0.002, and an interaction effect between adaptation and time, F(41, 1)= 4.10, P = 0.024, were seen for time trade-off valuations. Valuations given for one’s own health on the visual analogue scale did not significantly change over time, nor did the valuations for the hypothetical health state. Conclusion: Patients’ health state valuations change over time, over and above the change expected by the rehabilitation process, and this change is partly explained by adaptation. Experience with a chronic illness did not lead to change in valuations of hypothetical health states.

van Leeuwen CM, Post MW, Westers P, van der Woude LH, de Groot S. Sluis T, Slootman H, Lindeman E. Relationships between activities, participation, personal factors, mental health, and life satisfaction in persons with spinal cord injury. Arch Phys Med Rehabil 2012;93:82-9.Objective: To clarify relationships between activities, participation, mental health, and life satisfaction in persons with spinal cord injury (SCI) and specify how personal factors (self-efficacy, neuroticism, appraisals) interact with these components. We hypothesized that (1) activities are related directly to participation, participation is related directly to mental health and life satisfaction, and mental health and life satisfaction are 2 interrelated outcome variables; and (2) appraisals are mediators between participation and mental health and life satisfaction, and self-efficacy and neuroticism are related directly to mental health and life satisfaction and indirectly through appraisals.Design: Follow-up measurement of a multicenter prospective cohort study 5 years after discharge from inpatient rehabilitation.Setting: Eight Dutch rehabilitation centers with specialized SCI units.Participants: Persons (N=143) aged 18 to 65 years at the onset of SCI.Interventions: Not applicable.Main Outcome Measures: Mental health was measured by using the Mental Health subscale of the 36-Item Short Form Health Survey and life satisfaction with the sum score of "current life satisfaction" and "current life satisfaction compared with life satisfaction before SCI."Results: Structural equation modeling showed that activities and neuroticism were related to participation and explained 49% of the variance in participation. Self-efficacy, neuroticism, and 2 appraisals were related to mental health and explained 35% of the variance in mental health. Participation, 3 appraisals, and mental health were related to life satisfaction and together explained 50% of the total variance in life satisfaction.Conclusions: Mental health and life satisfaction can be seen as 2 separate but interrelated outcome variables. Self-efficacy and neuroticism are related directly to mental health and indirectly to life satisfaction through the mediating role of appraisals.

OBJECTIVE To investigate the prevalence of overweight/obesity and the course of the body mass index (BMI) in persons with spinal cord injury during and after inpatient rehabilitation. DESIGN Multi-centre longitudinal study. SUBJECTS A total of 184 persons with spinal cord injury. METHODS BMI was determined at the start of active rehabilitation, 3 months later, at discharge, and 1, 2 and 5 years after discharge. RESULTS The percentage of persons who were overweight/obese (BMI ≥ 22 kg/m2) increased over the years from 56% to 75%. The absolute BMI did not significantly increase during rehabilitation, but showed a significant increase the year after discharge from inpatient rehabilitation (p < 0.001). From examining the personal or lesion characteristics, age was the only factor that was related to the absolute BMI. BMI increased by 1 kg/m2 for each 10-year increase in age. Men, persons with paraplegia and older people had more chance of being overweight/obese compared with women, persons with tetraplegia and younger people. CONCLUSION The BMI of people with spinal cord injuries gradually increases during and after inpatient rehabilitation, with significant increases in the first year after discharge. It is recommended that emphasis is placed on weight-management protocols (diet and exercise) to encourage a healthy lifestyle.

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 I 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 I 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.

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.

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.

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 [Vo(2)peak, 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 Vo(2)peak contributed to the prediction of discharge Vo(2)peak (R-2=.51). Discharge Vo(2)peak contributed to its prediction 1 year later (R-2=.75). Start POpeak, sex, age, and level of lesion contributed to discharge POpeak (R-2=.73). Discharge POpeak, hours of employment before injury, and level of lesion contributed to POpeak 1 year later (R-2=.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 (R-2 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.

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 (VO(2)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, VO(2)peak, strength, and respiratory function improved during inpatient rehabilitation, and that VO(2)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 I component could improve another component.

Objective The basis for a physically active lifestyle and participation in adapted physical activity for many individuals with a disability will be laid during the initial phase of clinical rehabilitation. Little is known of the outcome and effectiveness of clinical rehabilitation on physical activity, fitness and restoration of mobility. A spinal cord injury is a common and typical diagnosis in clinical rehabilitation, often involving relatively young and active individuals. 'Restoration of mobility in spinal cord injury (SCI) rehabilitation' is a multi-disciplinary research collaboration