M.W.M. Post

Psychosocial issues in spinal cord injury: a review

Study design:Review.Objectives:To review literature on subjective well-being (SWB; mental health and life satisfaction) and on psychological and social support factors associated with these outcomes in people with spinal cord injury (SCI), in order to identify gaps in scientific knowledge and recommend research priorities.Setting:Non applicable.Methods:Narrative review of the SCI literature on life satisfaction and mental health (depression, anxiety, post-traumatic stress syndrome) outcomes in people with SCI. Further, reviews were performed of the SCI literature on psychological and social support variables associated with SWB and on psychosocial interventions aimed to improve SWB.Results:People with SCI experience, on average, higher levels of distress and lower levels of life satisfaction compared with the general population. Individual differences, however, are large, and most people with SCI adapt well to their condition. A set of psychological and social support factors is strongly related to SWB. Intervention studies on cognitive behavioural therapy or coping effectiveness training to improve SWB show promising results, but suffer from methodological weaknesses (for example, lack of randomization and small sample size).Conclusion:There is a need for cohort studies with sufficient sample size, which include people early after onset of SCI in order to enhance our understanding of the course of mental health and well-being after SCI. Cohort studies could also identify which people are at risk for long-term impairment of SWB. Finally, intervention studies on psychosocial interventions are needed to identify which interventions may improve SWB of people with SCI.

High prevalence of incontinence among young adults with spina bifida: description, prediction and problem perception

Study design:Cross-sectional study.Objectives:To study the prevalence of incontinence, problem perception and determinants of urinary and faecal incontinence in young adults with spina bifida.Setting:Nation-wide study in the Netherlands.Participants:A total of 179 of 350 invited patients participated, including 37 patients with spina bifida occulta and 142 with spina bifida aperta, of whom 119 had hydrocephalus; 41% were male and mean age was 20.4 (range 16–25 years).Methods:Data were collected from interviews, physical examination, neuropsychological tests and medical records.Results:Urinary and faecal incontinence was common in young adults with spina bifida (60.9 and 34.1%, respectively), regardless of the bladder and bowel management they used. The majority of urinary and faecal incontinent patients perceived this as a problem (69.7 and 77.0%, respectively). Spina bifida aperta, hydrocephalus and a level of lesion of L5 or above were associated with patients suffering from urinary and/or faecal incontinence. Predictors of perceiving urinary incontinence as a problem were, in addition to being incontinent, not having hydrocephalus and having a level of lesion of L5 or above. The only predictor of perceiving faecal incontinence as a problem was the frequency of incontinence.Conclusion:A majority of young adults with spina bifida suffer from urinary and faecal incontinence and most of them perceive their incontinence as a problem. Therefore, further efforts are important to improve urinary and faecal continence.

An epidemiological description of spinal cord injuries in The Netherlands in 1994

Study design: Retrospective descriptive study.Objectives: To ascertain the incidence of spinal cord injury in The Netherlands.Methods: From all patients, discharged from a Dutch general hospital in 1994 with the ICD-9 diagnosis code 806 (fracture of the spine with injury of the spinal cord) and 952 (injury to the spinal cord without apparent spinal fracture), a copy of the anonymized medical correspondence was requested. The received correspondence was analyzed for the diagnosis of traumatic spinal cord injury with motor, sensory, bladder and bowel symptoms lasting longer than 2 weeks.Results: 479 cases with the ICD-9 codes 806 or 952 were identified. On 329 cases we received information. According to our criteria 126 cases had a spinal cord injury with persisting symptoms. Of these 126 cases 18 died during hospital stay. Sex (77% male), level (57% tetra), completeness (48.7% complete), age distribution, cause of injury and incidence of stabilizing operation (44.2%) were assessed. Mean hospital stay was 31 days and of the subjects who survived the initial hospital phase, 70% were referred to a rehabilitation centre or a rehabilitation ward.Conclusion: The incidence of spinal cord injury surviving the acute phase in The Netherlands in 1994 was 10.4/million/annum.Sponsorship: De Hoogstraat Scientific Foundation.

Development and validation of impact-s, an ICF-based questionnaire to measure activities and participation

OBJECTIVE IMPACT-S is the screener part of the ICF Measure of Participation and ACTivities questionnaire. IMPACT-S consists of 33 items in 9 scales, reflecting the 9 activity and participation chapters of the International Classification of Functioning, Disability and Health (ICF). The reliability and validity of IMPACT-S as an independent brief measure of activities and participation was examined. DESIGN Repeated administration of a postal questionnaire. PATIENTS Road accident victims were recruited through several Dutch hospitals and rehabilitation centres. A total of 276 patients participated and 197 took part in both measurements. METHODS Examination of test-retest reliability, reproducibility and construct validity. The World Health Organization Disability Assessment Schedule II (WHODAS-II) was included as criterion measure for concurrent validity. RESULTS Types of main injury were fractures (38%), trauma?tic brain injury (37%), spinal cord injury (13%), whiplash (9%) and other (3%). Mean time after injury was 2.2 years. Internal consistency of IMPACT-S was satisfying for all 9 domains (0.75-0.89) and excellent for the total score (0.96). Test-retest reliability was good at item level (0.44-0.72), domain level (0.72-0.92) and total score (0.94). Strong correlations (0.61-0.88) between IMPACT-S and corresponding WHODAS-II scores were found. CONCLUSION IMPACT-S is a reliable and valid generic measure of activity limitations and participation restrictions that fits the ICF.

Services for spinal cord injured: availability and satisfaction

This article discusses service delivery for Spinal Cord Injured (SCI) in the Netherlands. In this wealthy country, almost everyone has access to domestic adaptations and other equipment, regardless of income and with low, or without user contributions. However, satisfaction with this system or its products is rarely examined. Subjects in this research are 318 SCI individuals between 18 and 65 years of age, living in the community at a mean time of 3.6 years after injury. Availability of accessible housing, domestic adaptations, wheelchairs and outdoor transportation is investigated. Satisfaction with available services and satisfaction with service delivery procedures is measured by self-developed questionnaires. Relationships between these satisfaction scores and measures for functional health status (SIP68) and life satisfaction (LSQ) are analyzed. The presence of domestic adaptations is high, and 78.3% said their houses were sufficiently adapted at the time of the interview. Wheelchairs were generally available and most respondents had more than one. However, many users had complaints about their wheelchairs: 35.9% about their manual wheelchairs and 47.5% about their electric wheelchairs. Public transport was rarely used, 51.1% of respondents had an adapted car. Having an adapted car was significantly related to the ability to drive independently. Satisfaction with available services was acceptable, but satisfaction with service delivery procedures was very low. Satisfaction with available services did have a significant relationship with functional health status when the influence of the type of injury was taken into account. Satisfaction with available services also had a significant relationship with life satisfaction, after the influence of functional health status was taken into account. Further research on this topic is recommended.

Burden of support for partners of persons with spinal cord injuries

Study design:Cross-sectional survey.Objectives:(1) To describe the support given to persons with spinal cord injuries (SCI) by their partners, (2) to describe the perceived burden of support by partners and (3) to examine predictors of perceived burden of support.Setting:The Netherlands.Methods:All members of the Dutch patients organisation DON (N=1004) and their caregivers, if applicable, were invited. Physical disability of the person with SCI was measured using the Barthel Index (BI). A number of secondary conditions, other practical problems and psychosocial problems were recorded. Partner support was described using a list of ADLsupport, other practical support and emotional support. Burden of support was measured by a six-item measure (Cronbachs alpha 0.92), Nonparametric descriptive statistics and correlations were used. Linear regression was used to identify predictors of caregiver burden.Results:Responses were obtained from 461 persons with SCI. Of 265 couples, patient as well as partner data were available. Mean age of the partners was 49.4 years (SD 12.2) and 69.8% were women. Mean BI of the persons with SCI was12.3 (SD 4.7) on a 0–20 scale and 60.4% were seriously disabled (BI<15). Most partners provided various kinds of support. ADL-support and other practical support were given much more often by partners of persons with serious disability, but less difference was seen regarding emotional support. Professional (paid) support was obtained by 45.3% of all couples. Perceived burden of support was high in 24.8% of partners of persons with serious disabilities against 3.9% of partners of persons with minor disabilities. Significant predictors of caregiver burden were (in order of importance) the amount of ADL support given, psychological problems of the patient, partner age, partner gender, BI score and time after injury (total explained variance 47%).Conclusion:A substantial proportion of partners of persons with SCI suffer from serious burden of support. Prevention of caregiver burnout should be part of the lifelong care for persons with SCI.

Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review

Study design:Systematic review.Objectives:To review the literature on relationships between psychological factors and quality of life (QOL) of persons with spinal cord injury (SCI).Setting:NA.Methods:A systematic literature search was conducted in several online databases (PubMed, Embase and PsychInfo). Articles were included if they provided quantitative information on associations between QOL-related dependent variables and psychological factors as independent variables in an SCI population. The search was limited to empirical studies published in English. The methodological quality of the included articles was assessed.Results:A total of 48 studies were included. Total locus of control, sense of coherence, self-worth, hope, purpose in life and positive affect were consistently associated with greater QOL. Negative affect and posttraumatic cognitions were consistently associated with lower QOL. Inconsistent evidence was found for subscales of locus of control, the role of attribution of blame, spirituality, personality, appraisals, passive coping and emotion-focused coping. No evidence was found for an association between active problem-focused coping styles and QOL.Conclusion:Many psychological factors were strongly and consistently related to QOL, but for some others no or inconsistent evidence was found. Further research should (1) use larger study groups, preferably in longitudinal designs, (2) improve terminological precision and avoid conceptual overlap between determinants and outcomes, (3) increase uniformity of questionnaires and (4) reexamine concepts that have been abandoned prematurely, such as personality and social comparison.

Characteristics, length of stay and functional outcome of patients with spinal cord injury in Dutch and Flemish rehabilitation centres.

Study design:Multi-centre prospective descriptive study.Objective:To establish a profile of the population affected with traumatic and non-traumatic spinal cord injury (SCI) admitted to rehabilitation centres in the Netherlands and Flanders (Belgium) and to describe determinants of length of stay (LOS) and functional outcome.Setting:Eleven rehabilitation centres in the Netherlands and Flanders.Patients:A total of 919 patients with traumatic and non-traumatic SCI on first admission to rehabilitation centres between 2002 and 2007.Methods:Information about LOS, functional outcome and personal and injury characteristics was derived from a joint data set developed for this project.Results:A total of 54.7% of patients with SCI had a non-traumatic lesion. The group of patients with non-traumatic SCI showed a more even gender distribution, a more advanced age and less severe lesion characteristics than the group of patients with traumatic SCI. Linear regression models explained 32% of the variance of LOS and 42% of the variance of functional outcome. Functional status on admission was the strongest determinant of LOS and completeness of the lesion was the strongest determinant of functional outcome. Aetiology (traumatic versus non-traumatic) was a weak independent determinant of LOS but was not an independent determinant of functional outcome.Conclusion:Patients with non-traumatic SCI formed a majority in the Dutch and Flemish SCI population. Although the characteristics of patients with traumatic and non-traumatic SCI clearly differed, rehabilitation of patients with non-traumatic SCI appears at least as efficient as rehabilitation of patients with traumatic SCI.

Perceived health in young adults with spina bifida

The aims of this study were to compare the perceived health of young adults with spina bifida with a population without disability, and to determine the effect of the disease characteristics and resulting impairments on perceived health. This cross‐sectional study is part of the Adolescents with Spina Bifida in the Netherlands study. Data were collected by physical examination and a questionnaire. In total, 179 patients (age range 16‐25y) participated in the study and perceived health data were completed for 164 participants (92 females, 72 males; mean age 20y 7mo [SD 2y 9mo]). Twenty‐six participants had spina bifida occulta and 138 had spina bifida aperta, of whom 115 also had hydrocephalus. Perceived health was measured with the Medical Outcome Study 36‐item Short‐form Health Survey (SF‐36), a generic health status measure. SF‐36 scores of young adults with spina bifida were below those of an age‐matched population group for six of the eight domains. This difference was largest for the physical functioning domain. Although these differences were statistically significant they were small. Findings for the emotional health domains (vitality, mental health, role problems due to emotional problems) did not differ at all from the population group.

Health behaviour of persons with spinal cord injury

Study design:Postal survey.Objective:To describe the health behaviour of persons with spinal cord injury (SCI) living in the community and the relationships between health behaviour, respondent/injury characteristics, and health-related variables: the presence and number of secondary impairments, readmissions in rehabilitation centre and hospital, and perceived health.Setting:Members of the Dutch Association of Patients with SCI.Methods:The frequency of health behaviours, that delay or prevent secondary impairments, was assessed by means of a 22-item, self-report questionnaire. The questionnaire was also focused on 13 secondary impairments.Results:The frequency of engaging in health behaviour varied considerably between the respondents. Variance was observed between and within the health behaviours measured. The respondents did not frequently engage in pressure relief methods when sitting/driving in their wheelchair. Almost no statistical differences were observed between health behaviour of subgroups of respondents based on respondent/injury characteristics. However, the total health behaviour scores increased significantly with increasing age and pressure sore prevention was significantly more applied in persons with a complete lesion. Health behaviour was significantly more applied in respondents who had one or more secondary impairments.Conclusion:As secondary impairments are prevalent among persons with SCI and education on a healthy lifestyle is a core component of every rehabilitation programme, it is of great importance to rigorously test the efficacy of health behaviours promoted during rehabilitation. Therefore, longitudinal research is recommended.