Exploring patients' experience using PROMs within routine post-discharge follow-up assessment after stroke: a mixed methods approach.

BACKGROUND: Patient Reported Outcomes Measures (PROMs) are being used increasingly to measure health problems in stroke clinical practice. However, the implementation of these PROMs in routine stroke care is still in its infancy. To understand the value of PROMs used in ischemic stroke care, we explored the patients' experience with PROMs and with the consultation at routine post-discharge follow-up after stroke. METHODS: In this prospective mixed methods study, patients with ischemic stroke completed an evaluation questionnaire about the use of PROMs and about their consultation in two Dutch hospitals. Additionally, telephone interviews were held to gain in-depth information about their experience with PROMs. RESULTS: In total, 63 patients completed the evaluation questionnaire of which 10 patients were also interviewed. Most patients (82.2-96.6%) found completing the PROMs to be feasible and relevant. Half the patients (49.2-51.6%) considered the PROMs useful for the consultation and most patients (87.3-96.8%) reported the consultation as a positive experience. Completing the PROMs provided 51.6% of the patients with insight into their stroke-related problems. Almost 75% of the patients found the PROMs useful in giving the healthcare provider greater insight, and 60% reported discussing the PROM results during the consultation. Interviewed patients reported the added value of PROMs, particularly when arranging further care, in gaining a broader insight into the problems, and in ensuring all important topics were discussed during the consultation. CONCLUSIONS: Completing PROMs appears to be feasible for patients with stroke attending post-discharge consultation; the vast majority of patients experienced added value for themselves or the healthcare provider. We recommend that healthcare providers discuss the PROM results with their patients to improve the value of PROMs for the patient. This could also improve the willingness to complete PROMs in the future.

The Self-Regulation Assessment (SeRA) questionnaire: development and exploratory analyses of a new patient-reported outcome measure for rehabilitation.

PURPOSE: To develop and explore underlying dimensions of the Self-Regulation Assessment (SeRA) and psychometric features of potential components. Further, to identify associations between the SeRA and disability-management self-efficacy, type of diagnosis, and type of rehabilitation. MATERIALS AND METHODS: Based on a previously developed model of self-regulation, expert and patient opinions, and cognitive interviews, a list of 22 items on self-regulation (the SeRA) was constructed. The SeRA was included in a cross-sectional survey among a multi-diagnostic group of 563 former rehabilitation patients. Exploratory analyses were conducted. RESULTS: Respondents had a mean age of 56.5 (SD 12.7) years. The largest diagnostic groups were chronic pain disorder and brain injury. Four components were found within the SeRA, labelled as "insight into own health condition," "insight into own capabilities," "apply self-regulation," and "organization of help." Cronbach's alpha was high (total scale: 0.93, subscales: range 0.85-0.89). Only scores on the first subscale showed a ceiling effect. Subscale three showed the highest correlation with a self-efficacy measure. Small differences in SeRA total scores (range 71.6-78.1) were found between different diagnostic groups. CONCLUSION: The SeRA is a new self-regulation measure with four subscales. Further research is needed to establish the validity and reliability of the SeRA. IMPLICATIONS FOR REHABILITATIONThe Self-Regulation Assessment (SeRA) was developed to provide a comprehensive measurement of self-regulation among rehabilitation populations.The SeRA could potentially be used to identify persons with self-regulation problems at the start of rehabilitation treatment and measure outcomes of rehabilitation for self-regulation.The SeRA could potentially be used to help analyse outcomes of rehabilitation practice as well as evaluate interventions on self-regulation.

Intra- and interpersonal effects of coping style and self-efficacy on anxiety, depression and life satisfaction in patient-partner couples after stroke.

Many stroke patients and partners suffer from anxiety, depression, and low life satisfaction. Psychological factors such as coping style and self-efficacy can be protective factors within individuals. The close relationship between stroke patients and partners suggests that there may be interdependence in psychological functioning. The aim of this study was to examine intra- and interpersonal effects of coping style and self-efficacy on anxiety, depression, and life satisfaction in patient-partners couples. In this prospective cohort study, pro-active coping (UPCC), general self-efficacy (GSES), anxiety (HADS-A), depression (HADS-D), and life satisfaction (1-6 scale) were assessed in 215 couples at 2 and 12 months post-stroke. Effects within couples were assessed using structural equation modelling. Several intra- and interpersonal effects of coping style and self-efficacy at 2 months post-stroke were related to emotional health at 12 months post-stroke. Most effects were intrapersonal effects. The interpersonal effects were small but showed that pro-active coping by the patient was associated with lower anxiety of the partner. Higher self-efficacy of the partner was associated with lower depression scores and higher life satisfaction of the patient. This study underscores the importance of a dyadic approach to post-stroke functioning. It supports a family-based approach for treating post-stroke emotional problems.

Measures of self-regulation used in adult rehabilitation populations: A systematic review and content screening.

OBJECTIVE: We aimed to identify generic measures of self-regulation and to examine the degree to which these measures fit a recently developed conceptual model of self-regulation in a rehabilitation context. DATA SOURCES: Pubmed, Embase, PsycInfo, and CINAHL were searched. REVIEW METHODS: Articles were included if they were published between January 2015 and August 2020 and reported on empirical studies (trials and observational studies) using a measure of self-regulation or a related concept, in an adult rehabilitation population. Main content was analysed by linking all items of the selected measures to one or more of the six sub-themes of self-regulation: (1) insight into physical and cognitive impairments, (2) insight into the consequences of the impairments, (3) insight into abilities, (4) to be able to communicate limitations, (5) trust in body and functioning, and (6) make use of abilities. RESULTS: Two reviewers independently screened 7808 abstracts, resulting in the inclusion of 236 articles. In these articles, 80 different measures were used to assess self-regulation or related concept. Nineteen of these measures met the inclusion criteria and were included for the content analyses. Nine of these were self-efficacy measures. No measures covered four or more of the six sub-themes of self-regulation. The three sub-themes on gaining insights were covered less compared to the sub-domains 'trust' and 'make use of abilities'. CONCLUSIONS: Many measures on self-regulation exist None of these measures cover all six sub-themes of self-regulation considered important to measure self-regulation as a rehabilitation outcome.

The influence of psychological factors and mood on the course of participation up to four years after stroke.

PURPOSE: (1) To explore the course of participation from two months up to four years after stroke, and (2) to examine if adaptive and maladaptive psychological factors and mood measured at two months after stroke are determinants of the course of participation during this period. MATERIALS AND METHODS: Prospective cohort study in which 369 individuals with stroke were assessed at stroke onset, two months, six months, one year, two years and three to four years after stroke. The Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) restrictions subscale was used to measure participation. Psychological factors were clustered into adaptive (proactive coping, self-efficacy, extraversion and optimism) and maladaptive (passive coping, neuroticism and pessimism) psychological factors. The Hospital Anxiety and Depression Scale was used to assess mood. RESULTS: Although improvements in participation were observed up to one year after stroke, considerable long-term restrictions in social and physical domains persisted. More mood problems and less adaptive psychological factors were independent determinants of worse participation up to four years after stroke. CONCLUSIONS: Participation improves in the first 12 months after stroke and stabilizes afterwards. Mood problems and less adaptive psychological factors negatively influence the course of participation over time up to four years after stroke.Implications for rehabilitationFollow-up assessments after stroke should not only focus on cognitive and motor impairment, but also encompass screening on mood problems and adaptive psychological factors.Implementation of a routine follow-up assessment one year after stroke can be beneficial as restrictions in participation are unlikely to diminish spontaneously from then onwards.

Self-regulation as rehabilitation outcome: what is important according to former patients?

PURPOSE: Self-regulation refers to self-management and self-control, with or without disability. Outcomes of rehabilitation with respect to self-regulation are unclear. This study aims to identify elements of self-regulation that former patients consider important in the context of medical rehabilitation. MATERIALS AND METHODS: Qualitative exploration based on focus group discussions (FGDs). Transcripts were analysed using thematic analysis as well as open coding. Forty individuals participated in seven diagnosis-related FGDs. RESULTS: Six subthemes were raised in the FGDs which could be merged into three main themes. Two main themes are conditional for regaining self-regulation: 1) having insight into one's condition and abilities (i.e., insight into impairments. consequences of impairments. abilities); 2) to know how to cope with the consequences of the condition (be able to communicate limitations; have to trust in body and functioning). The subject of the last theme 3) is how to apply self-regulation in one's own life (to make use of abilities and optimize functioning). CONCLUSIONS: Three main themes of self-regulation in the context of medical rehabilitation were identified by former patients, partly relating to the ability to self-regulate and partly to the execution of self-regulation. This knowledge can be used to define specific rehabilitation goals and further develop rehabilitation outcome measurement.IMPLICATIONS FOR REHABILITATIONAwareness of the fundamental subthemes of self-regulation in rehabilitation will positively contribute to theory building and improve clinical practice (e.g., goal setting).Paying explicit attention to the six subthemes as standard elements of rehabilitation will help to provide a comprehensive view concerning self-regulation.The conceptual model of self-regulation, based on patient perspectives, can contribute to the measurement of rehabilitation outcomes.

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

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

Which approach to measure cognitive functioning should be preferred when exploring the association between cognitive functioning and participation after stroke?

A variety of approaches are currently used to explore the relationship between cognitive functioning and participation after stroke. We aimed to gain insight into the preferred approach to measure cognitive functioning when exploring the association between cognitive functioning and participation in the long term after stroke. In this inception cohort study 128 individuals with stroke participated and were assessed at a single time point three to four years after the event. Participation was measured using the Restrictions subscale of the Utrecht Scale for Evaluation of Rehabilitation-Participation. Subjective cognitive complaints were assessed using the Cognition subscale of the Checklist for Cognitive and Emotional Consequences (CLCE-24-C). Objective cognitive performance was measured using the Montreal Cognitive Assessment (MoCA) and a neuropsychological test battery (NTB) testing multiple cognitive domains. Participation showed a strong correlation (r = 0.51) with the CLCE-24-C and moderate correlations with the domains of visuospatial perception (r = 0.37) and mental speed (r = 0.36). Backward linear regression analyses showed that participation restrictions were best explained by the combination of the CLCE-24-C and a test for visuospatial perception (R2 = 0.31). Our findings suggest the use of a combination of subjective cognitive complaints and objective cognitive performance to explore the relationship between cognitive functioning and participation after stroke.

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

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

Associations between illness cognitions and health-related quality of life in the first year after diagnosis of amyotrophic lateral sclerosis.

OBJECTIVE: To describe illness cognitions among patients with amyotrophic lateral sclerosis (ALS), to study cross-sectional associations between illness cognitions and health-related quality of life (HRQoL) and to study the predictive value of illness cognitions measured shortly after the diagnosis for HRQoL at follow-up. METHODS: Prospective longitudinal design. We administered Self-report questionnaires at study onset (n = 72) and follow-up (n = 48). Median follow-up period was 10.0 months. At baseline median ALS Functional Rating Scale-Revised was 43, median time since onset of symptoms was 13.6 months, 79% of patients presented with spinal onset. Illness cognitions Helplessness, Acceptance and Disease Benefits were measured with the Illness Cognitions Questionnaire (ICQ) and HRQoL with the ALS Assessment Questionnaire (ALSAQ-40). Correlational and regression analyses were used. RESULTS: Patients experienced more Helplessness at follow-up. We found no significant changes in Acceptance or Disease Benefits at follow-up. In cross-sectional analyses, Helplessness was independently related to worse HRQoL at baseline (ß = 0.44; p = .001) and Acceptance and Disease Benefits were independently related to worse HRQoL at follow-up (ß = -0.17, p = .045) and (ß = -0.186, p = .03 respectively). Longitudinal analyses showed that, adjusted for disease severity at baseline, Helplessness at baseline was a predictor of worse HRQoL at follow-up (ß = 0.43; p = .006). None of the illness cognitions were a significant predictor of HRQoL with adjustment for baseline HRQoL. CONCLUSION: Helplessness was independently associated with HRQoL in the cross-sectional and longitudinal analyses. These results can help us identify patients shortly after diagnosis who might benefit from psychological interventions.

Epidemiology of Traumatic Spinal Cord Injury in the Netherlands: Emergency Medical Service, Hospital, and Functional Outcomes.

BACKGROUND: Evaluating treatment of traumatic spinal cord injuries (TSCIs) from the prehospital phase until postrehabilitation is crucial to improve outcomes of future TSCI patients. OBJECTIVE: To describe the flow of patients with TSCI through the prehospital, hospital, and rehabilitation settings and to relate treatment outcomes to emergency medical services (EMS) transport locations and surgery timing. METHOD: Consecutive TSCI admissions to a level I trauma center (L1TC) in the Netherlands between 2015 and 2018 were retrospectively identified. Corresponding EMS, hospital, and rehabilitation records were assessed. RESULTS: A total of 151 patients were included. Their median age was 58 (IQR 37-72) years, with the majority being male (68%) and suffering from cervical spine injuries (75%). In total, 66.2% of the patients with TSCI symptoms were transported directly to an L1TC, and 30.5% were secondarily transferred in from a lower level trauma center. Most injuries were due to falls (63.0%) and traffic accidents (31.1%), mainly bicycle-related. Most patients showed stable vital signs in the ambulance and the emergency department. After hospital discharge, 71 (47.0%) patients were admitted to a rehabilitation hospital, and 34 (22.5%) patients went home. The 30-day mortality rate was 13%. Patients receiving acute surgery (<12 hours) compared to subacute surgery (>12h, <2 weeks) showed no significance in functional independence scores after rehabilitation treatment. CONCLUSION: A surge in age and bicycle-injuries in TSCI patients was observed. A substantial number of patients with TSCI were undertriaged. Acute surgery (<12 hours) showed comparable outcomes results in subacute surgery (>12h, <2 weeks) patients.

Correction: Experienced sitting-related problems and association with personal, lesion and wheelchair characteristics in persons with long-standing paraplegia and tetraplegia.

A correction to this paper has been published and can be accessed via a link at the top of the paper.

Experienced sitting-related problems and association with personal, lesion and wheelchair characteristics in persons with long-standing paraplegia and tetraplegia.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: To describe experienced sitting-related health and stability problems among persons with paraplegia (PP) or tetraplegia (TP) and to investigate associations with personal, lesion and wheelchair characteristics as well as satisfaction with sitting posture. SETTING: Dutch community. METHODS: A self-report questionnaire on seating was developed and completed by wheelchair-users living with Spinal Cord Injury (SCI) for ≥10 years (N = 264). Sitting-related problems and satisfaction with sitting posture were compared between participants with PP and TP using Chi-square and t-tests. Logistic regression analyses were performed to investigate associated characteristics. RESULTS: Reported sitting-related problems comprised: sitting to be tiring (regularly to always) (33%), sitting to be painful (28%), pressure ulcers in the last three months (29%), instability while sitting (8%) and instability during reaching (33%). Except for instability during reaching, no differences in occurrence of sitting-problems were found between lesion-group. Persons with TP were more dissatisfied with their sitting posture than persons with PP: 51% vs 36% (p = 0.022) and 51% and 47% respectively thought their sitting posture could be improved (p = 0.670). 'Experienced lack of support in the wheelchair' was associated with most sitting-problems. Pain and instability were associated with dissatisfaction with sitting posture. CONCLUSION: Sitting-related problems and dissatisfaction with sitting posture were frequently reported by persons with long-standing SCI. Sitting problems appeared to associate with lacking support in the wheelchair/seating. A comprehensive feedback from the wheelchair user and a stability check (reach task), as part of the wheelchair/seating-user fitting, may contribute to prevention of sitting-related problems.

The Wayfinding Questionnaire: A clinically useful self-report instrument to identify navigation complaints in stroke patients.

Post-stroke navigation complaints are frequent (about 30%) and intervention is possible, but there is no assessment instrument to identify patients with navigation complaints. We therefore studied the clinical validity of the Wayfinding Questionnaire (WQ) in a cross-sectional study with 158 chronic stroke patients and 131 healthy controls. Patients with low (more navigation complaints) versus normal WQ scores were compared for demographics, stroke characteristics, emotional and cognitive complaints, and health-related quality of life (HRQoL). Actual navigation performance of 78 patients was assessed in a virtual reality setting. Effect sizes (d) were calculated. WQ responses (22 items) of stroke patients were compared with those of controls (discriminant validity). Results showed that patients with a low WQ score (n = 49, 32%) were more often women (p = 0.013) and less educated (p = 0.004), reported more cognitive complaints (d = 0.69), more emotional problems (d = 0.38 and 0.52), and lower HRQoL (d = 0.40 and 0.45) and, last but not least, performed worse on the navigation ability tasks (d = 0.23-0.80). Patients scored lower than controls on 21/22 WQ items, predominantly with small to medium effect sizes (d = 0.20-0.51). We conclude that the WQ is valid as a measure of navigation complaints in stroke patients, and thus strongly advocate its use in stroke care.

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

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

International Spinal Cord Injury Core Data Set (version 2.0)-including standardization of reporting.

STUDY DESIGN: The study design includes expert opinion, feedback, revisions and final consensus. OBJECTIVES: The objective of the study was to present the new knowledge obtained since the International Spinal Cord Injury (SCI) Core Data Set (Version 1.0) published in 2006, and describe the adjustments made in Version 2.0, including standardization of data reporting. SETTING: International. METHODS: Comments received from the SCI community were discussed in a working group (WG); suggestions from the WG were reviewed and revisions were made. All suggested revisions were considered, and a final version was circulated for final approval. RESULTS: The International SCI Core Data Set (Version 2.0) consists of 25 variables. Changes made to this version include the deletion of one variable 'Total Days Hospitalized' and addition of two variables 'Date of Rehabilitation Admission' and 'Date of Death.' The variable 'Injury Etiology' was extended with six non-traumatic categories, and corresponding 'Date of Injury' for non-traumatic cases, was defined as the date of first physician visit for symptoms related to spinal cord dysfunction. A category reflecting transgender was added. A response category was added to the variable on utilization of ventilatory assistance to document the use of continuous positive airway pressure for sleep apnea. Other clarifications were made to the text. The reporting of the pediatric SCI population was updated as age groups 0-5, 6-12, 13-14, 15-17 and 18-21. CONCLUSION: Collection of the core data set should be a basic requirement of all studies of SCI to facilitate accurate descriptions of patient populations and comparison of results across published studies from around the world.

Version 1.1 of the international spinal cord injury skin and thermoregulation function basic data set.

OBJECTIVE: To describe the changes made to the international spinal cord injury (SCI) skin and thermoregulation function basic data set in version 1.1. SETTING: International. METHODS: An international working group reviewed suggested changes to the international SCI skin and thermoregulation function basic data set version 1.0. These changes were discussed and the agreed changes were made. Subsequently, the recommended adjustments were circulated for review to the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, the American Spinal Injury Association (ASIA) Board, around 40 national and international societies, and to interested individuals who had signed up wishing to have the opportunity to review. In addition, the suggested changes were displayed at the ISCoS and ASIA websites for at least a month for possible comments. RESULTS: The recommendation 'largest diameter, including undermining' is changed to: 'Largest undermining', and a description of how to measure this is inserted. The 'smallest opening diameter' is changed to: 'Width' as the maximum dimension perpendicular to the length axis. In the literature, there is a tendency to replace 'grades' or 'stages' with 'categories'; therefore, the word 'category' is used instead of 'grade' or 'stage'. CONCLUSIONS: Impracticable measurements have been adjusted and new terminology adopted. All are to be found on ISCoS website: http://www.iscos.org.uk/international-sci-skin-and-thermoregulation-function-data-sets.

Associations between disability-management self-efficacy, participation and life satisfaction in people with long-standing spinal cord injury.

OBJECTIVES: To study disability-management self-efficacy (DMSE) and its correlates in a large sample of Dutch people with long-standing spinal cord injury (SCI). DMSE is the confidence that people with SCI may have in their ability to manage the consequences of their condition with respect to the various domains in their life. Research questions were: (1) What is the level of DMSE in Dutch people with long-standing SCI?; (2) Is DMSE associated with demographic and lesion characteristics?; and (3) Is DMSE associated with participation and life satisfaction if these associations are adjusted for demographic and lesion characteristics and mood? METHODS: Eligible people were identified from all eight rehabilitation centers with a specialty in SCI rehabilitation in the Netherlands (N=261). Data were collected using a self-report questionnaire. DMSE was measured using the University of Washington Self-Efficacy Scale-Short Form (UW-SES-6). Correlation and linear regression analyses were used. RESULTS: Levels of UW-SES-6 scores were largely independent of demographic and lesion characteristics. UW-SES-6 scores were bivariately moderately to strongly associated with mood (0.47), participation (0.39-0.51) and life satisfaction (0.46). In the regression analyses, UW-SES-6 scores still explained a significant amount of variance of participation (standardized ß 0.31-0.33) and life satisfaction (standardized ß 0.21) when controlling for demographic and lesion characteristics and mood, and explained an additional 3.2-8.1% of the variance of participation and life satisfaction. CONCLUSION: DMSE is a psychological resource associated with higher levels of participation and life satisfaction after SCI. The UW-SES-6 is a brief and easy to use measure of this psychological resource.

Impact of health problems secondary to SCI one and five years after first inpatient rehabilitation.

STUDY DESIGN: This is a multicenter prospective cohort study. OBJECTIVES: The objective of this study was to describe and compare the impact of health problems secondary to spinal cord injury (SCI) on functioning at home and on social activities at 1 and 5 years after discharge from first inpatient rehabilitation. SETTING: The study was conducted in a Dutch community. METHODS: Participants with SCI who use a wheelchair for everyday mobility (N=110) completed a self-report questionnaire as part of a larger cohort study including four items on extra time needed (body care, bladder and bowel regulation, 'organization' and transportation) and impact of 10 health problems on functioning at home and on social activities. The 10 health problems include secondary health conditions (bladder regulation, bowel regulation, decubitus, pain, spasticity, gain in body weight and edema), psychosocial problems (sexuality, having difficulty with being dependent on help from others) and handicap management. RESULTS: Median extra time needed for self-management and transportation was not significantly higher 1 year after discharge (16 (IQR 13.5) h per week) compared with 5 years after discharge (13 (IQR 17) h per week) (P=0.925). Participants reported slightly less impact, comparing the severity sum-score (range 10-50) of the 10 health problems on functioning at home and in social activities, 5 years post discharge (20 and 17, respectively) than 1 year post discharge (21 and 18, respectively; P<0.05). Most frequently mentioned health problems were handicap management, being dependent on help from others, bladder regulation, bowel regulation, pain and sexuality. CONCLUSIONS: The impact of health problems after SCI is considerable and hardly diminishes over time. These results emphasize the need for structured long-term care for people with SCI.