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.

Feasibility of an online well-being intervention for people with spinal cord injury: a pilot study.

STUDY DESIGN: Pre-test and post-test designs with 14 participants. Measurements were taken at baseline (T1), immediately after the intervention (T2) and at 3-month follow-up (T3). OBJECTIVES: Psyfit is an online self-help program designed to enhance well-being in persons with depressed mood. We examined the feasibility of Psyfit in people with spinal cord injury (SCI). SETTING: Community, the Netherlands. METHODS: Participants chose two of the six Psyfit modules. The researcher maintained telephone contact with the participants. Feasibility was inferred from the completion rate of the modules and feedback from the participants. Outcome measures were the Mental Health Inventory-5, the Center for Epidemiological Studies Depression scale and the Warwick-Edinburgh Mental Well-Being Scale. RESULTS: Overall, 75% of the first module and 39% of the second module were completed. Seven participants were considered as study completers and were included in the evaluation. They evaluated Psyfit as a useful program and helpful for persons with SCI. Several technical problems were reported that mainly concerned browser compatibility. An increase in mental health and nonsignificant change of well-being were found at the end of the intervention period, but these were not maintained at follow-up. CONCLUSION: Psyfit seems a potentially feasible program. However, adaptation to the SCI population and further study with a controlled design and utilizing a larger sample size are necessary before it can be recommended as part of SCI rehabilitation.

Causes of death following spinal cord injury during inpatient rehabilitation and the first five years after discharge. A Dutch cohort study.

STUDY DESIGN: Prospective multicentre cohort study. OBJECTIVES: To determine mortality, causes and determinants of death of individuals with spinal cord injury (SCI) within five years after first inpatient rehabilitation. SETTING: The Netherlands. METHODS: Patients were included on admission to first clinical rehabilitation after traumatic or nontraumatic SCI. INCLUSION CRITERIA: age between 18 and 65, American Spinal Injury Association impairment scale A-D and expected long-term wheelchair dependency. Information about survival, cause of death, relevant comorbidity and psychosocial circumstances was obtained from the rehabilitation physician or general practitioner. Determinants of death were retrieved from a prospectively collected database. Deceased persons and survivors were compared using χ(2)-test and t-test. Cox regression analysis was performed to describe independent predictors of death. The Kaplan-Meier method was used to calculate survival curves for independent predictors. Excess mortality was described by a standardized mortality ratio (SMR). RESULTS: Mean duration of follow up was 6.2 years. A total of 27 persons (12.2%) died during this period (SMR 5.3). Main causes of death were cardiovascular disease (37.0%), pulmonary disease (29.6%) and neoplasm (14.8%). Older age at injury, nontraumatic SCI, family history of cardiovascular disease, less social support and a history of other medical conditions on admission were related to death. Older age at injury, nontraumatic SCI and a history of other medical conditions were independent predictors of death. CONCLUSION: Twelve per cent of persons with SCI who had survived the acute hospital phase died during follow up (SMR 5.3). The main causes of death were cardiovascular and pulmonary disease.

Validity of the mental health subscale of the SF-36 in persons with spinal cord injury.

STUDY DESIGN: Cross-sectional study 5 years after discharge from inpatient rehabilitation. OBJECTIVE: To examine the psychometric properties of the Mental Health subscale (MHI-5) of the 36-Item Short Form Health Survey (SF-36) in persons with spinal cord injury (SCI). SETTING: Eight Dutch rehabilitation centres with specialised SCI units. METHODS: Possible floor and ceiling effects were assessed, and Cronbach's α coefficient was calculated to assess internal consistency. Concurrent and divergent validity were assessed using Spearman correlations between the MHI-5 and measures of life satisfaction, neuroticism, vitality, general health, functional independence, participation, lesion characteristics and demographics. RESULTS: There were no floor or ceiling effects, but the total MHI-5 score was slightly skewed (-1.15). Internal consistency was good (α=0.79). Concurrent validity was shown by significant Spearman correlations between the MHI-5 and life satisfaction (0.53), neuroticism (-0.55), vitality (0.53) and general health (0.37). Divergent validity was shown by weak and, in part, non-significant correlations between the MHI-5 and functional independence (0.09), participation (-0.28) and lesion characteristics (range -0.01-0.19). CONCLUSION: The MHI-5 showed reliability and validity as a measure of mood in persons with SCI, and is a promising measurement instrument to assess mental health problems in this population.

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.

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.