Quality of life in and after spinal cord injury rehabilitation: a longitudinal multicenter study.

PURPOSE: To investigate the changes in quality of life (QOL) in persons with spinal cord injury (SCI) and their close persons during the first 2 years post injury. METHOD: Longitudinal multiple sample multiple wave panel design. Data included 292 patients recruited from Austrian British German Irish and Swiss specialist SCI rehabilitation centers and 55 of their close persons. Questionnaire booklets were administered at 6 weeks 12 weeks 1 year and 2 years after injury to both samples. RESULTS: Study 1 investigated the WHOQOL-BREF domains in individuals with SCI and found differences mostly in the physical domain indicating that QOL increases for persons with SCI from onset. An effect of the culture was observed in the psychological and environmental domains with higher QOL scores in the German-speaking sample. Study 2 compared individuals with SCI to their close persons and found differences in the physical environmental and social domains over time. The scores on the psychological dimension did not significantly differ between the persons with SCI and their close persons over time. CONCLUSION: QOL measured by the WHOQOL-BREF shows that QOL changes during rehabilitation and after discharge. Apart from the physical dimension the persons with SCI and their close persons seem to experience a similar change in QOL. Further longitudinal research is suggested to clarify the mutual adjustment process of people with SCI and their close persons and to explore cultural differences in QOL between English-and German-speaking countries.

Adaptation and validation of the Spanish version of the Spinal Cord Lesion-related Coping Strategies Questionnaire (SCL CSQ-S).

STUDY DESIGN: Cross-sectional validation study. OBJECTIVES: To adapt the Spinal Cord Lesion-related Coping Strategies Questionnaire into the Spanish language (SCL CSQ-S) and to examine the relationship between coping strategies, global quality of life and psychological adaptation. SETTING: Data were collected through individuals with spinal cord injury (SCI) now living in the community who completed their routine follow-up assessment at the Institute Guttmann in Barcelona, Spain. METHODS: Forward and backward translation into Spanish of the English version of the questionnaire. Questionnaires of global Quality of Life, Community Integration, Coping, Depression, Anxiety and Functional Independence were administered to 349 adults with paraplegia and 162 adults with tetraplegia. Statistical analysis included confirmatory factor analysis and regression analysis. RESULTS: The factorial structure of the questionnaire was partly verified. The original correlated, three-factor model sufficiently fit the data obtained in this study: χ(2)(48)=109.46; P<0.001; Comparative Fit Index=0.96; Tucker-Lewis Index=0.96; Root Mean Square Error of Approximation=0.050 (0.038-0.062); Akaike information criterion=13.46. Items were found to be good indicators of their respective latent factors, showing adequate factorial charge ranges (between 0.41 and 0.75). The reliability coefficient (Cronbach's α) for the Acceptance subscale was 0.74, for Social reliance 0.76 and for Fighting spirit 0.69. Coping strategies as measured by SCL-CSQ-S contributed to the prediction of outcomes related to adaptation to disability. CONCLUSION: The results of the study show some evidence for the robustness of the structure of SCL CSQ-S and show that the Spanish version of the questionnaire largely replicate previous results. Coping strategies, especially Acceptance, are related to adaptation to injury.

Reliability and validity of the Turkish version of spinal cord lesion-related coping strategies.

OBJECTIVE: Spinal Cord Lesion-Related Coping Strategies Questionnaire (SCL CSQ) is a specific test that is developed for evaluating the coping strategies of the persons with spinal cord injury (SCI). The aim of this study was to evaluate the reliability and validity of the Turkish version of SCL CSQ (SCL CSQ-T) in persons with SCI. METHODS: One hundred persons with SCI were included in the study. All participants were evaluated with SCL CSQ-T and Brief Coping Styles Inventory (BCSI) at the baseline. SCL CSQ-T was repeated twice in 15 days. American Spinal Injury Association Impairment Scale and Functional Independence Measurement were used for the evaluation of the neurological loss severity and functional status. Emotional status was assessed by Hospital Anxiety and Depression Scale (HADS). Internal consistency reliability, test-retest reliability and construct validity of SCL CSQ-T were evaluated. RESULTS: Intraclass correlation coefficients of the SCL CSQ-T were between 0.51-0.86. Cronbach's alpha values and test-retest reliability of the acceptance, fighting spirit and social reliance subscales were good. Three factors were found in exploratory factor analysis. There was a positive correlation between the subscales of SCL CSQ-T. There was a statistically significant positive correlation between acceptance strategy of SCL CSQ-T and self-confidence and optimism of BCSI. The fighting spirit strategy positively correlated with self-confidence and optimistic strategies. The social reliance strategy positively correlated with helplessness and seeking social support. Coping strategies did not correlate with HADS. CONCLUSION: The results of this study revealed good internal consistency reliability, test-retest reliability and concurrent validity of the SCL CSQ-T factors acceptance and fighting spirit in relation to general coping strategies. The coping strategy social reliance needs revisions.

Perceptions of gain following spinal cord injury: a qualitative analysis.

BACKGROUND: Significant research has focused on psychological difficulties following spinal cord injury (SCI), and there is a small prevalence of individuals who experience distress after injury. However, the converse is that many adjust well to injury and rate their quality of life highly. Despite this, there has been a comparative dearth of research investigating positive psychological outcomes after SCI, perceived by individuals living with this disability. OBJECTIVE: To explore individuals' perceptions of gain following the experience of SCI. METHODS: Participants, who had sustained an SCI between the ages 16 and 83, responded to an open-ended written question: "What do you think you have gained from the experience of spinal cord injury?" This was administered at 4 time points post injury: 6 weeks, 12 weeks, 1 year, and 2 years. RESULTS: Participants' responses were analyzed qualitatively using the framework of thematic analysis. Thirteen themes were identified: relationships, appreciation of relationships, perspective and appreciation of life, new goals or priorities, understanding of SCI or disability, appreciation of health or health care, changed personality, opportunity or challenge, knowledge of SCI or body, newly acquired skills, spirituality, acceptance, and nothing. Descriptive statistics were incorporated in the presentation of the data. CONCLUSIONS: This study provides evidence that a broad range of positive as well as negative psychological outcomes are possible following SCI. More research is needed to better understand the process through which these outcomes arise and to inform how such outcomes may be communicated to persons experiencing this type of injury.

Validation of the Swedish version of the Clinical Outcomes in Routine Evaluation Outcome Measure (CORE-OM).

UNLABELLED: The purpose of this study was to perform an initial validation of a Swedish translation of the Clinical Outcomes in Routine Evaluation Outcome Measure (CORE-OM). The CORE-OM is a broad self-report instrument of psychological problems, designed as an outcome measure for evaluating the effects of psychological therapy. Participants included a non-clinical group of 229 university students and a clinical group of 619 persons from four primary care sites. The Swedish CORE-OM showed excellent acceptability, high internal consistency and test-retest reliability, as well as acceptable convergent validity. There was strong differentiation of the clinical and non-clinical samples, with the clinical group scoring significantly more psychological problems than the non-clinical group. Sensitivity to change was demonstrated in psychological treatments in primary care. Overall, the psychometric characteristics of the Swedish CORE-OM were very similar to the original UK data. Nevertheless, the validity of the Swedish version needs to be examined more in detail, in larger and more diverse samples. Our results so far, however, provide support for using the Swedish CORE-OM as a psychological problems measure. To our knowledge, there are few other relatively short measures in Swedish that are free to reprint that meet the demands for psychometric properties and utility in primary care settings in which patients typically present a broad range of psychological problems. KEY PRACTITIONER MESSAGE: The Swedish version of the CORE-OM is a valid questionnaire for assessing the severity of a broad range of psychological problems.

Appraisals, coping and adjustment pre and post SCI rehabilitation: a 2-year follow-up study.

STUDY DESIGN: Longitudinal, multi-wave panel design. OBJECTIVES: To explore the changes in and the relationships between appraisals and coping with mood, functioning and quality-of-life (QOL) pre- and post-rehabilitation for acute spinal cord injury (SCI). SETTING: The data collected was part of an ongoing study from specialist units in selected British, Swiss, German and Irish SCI centres. METHODS: Questionnaires (Functional Independence, QOL, Mood, Appraisals, Coping and Support) were administered to 232 patients at 12 weeks post injury and sent to participants at 1 and 2 years post injury by post. RESULTS: Significant changes were observed in various outcome measures between 12 weeks and 1 year post injury, with little significant change occurring during the following year. Appraisals and coping at 12 weeks post injury were significantly related to outcome scores and also contributed significantly to the variance in QOL, mood and stress-related growth at 2 years post injury. CONCLUSION: The study provides further evidence for the link between appraisals, coping and subsequent adjustment to injury. Suggestion is made for the potential benefit of early assessment and intervention for patients at risk of poor adjustment to SCI.

Cognitive appraisals, coping and quality of life outcomes: a multi-centre study of spinal cord injury rehabilitation.

STUDY DESIGN: Longitudinal, multiple wave panel design. OBJECTIVES: To investigate the degree to which current thinking in terms of early appraisals and coping predicts adjustment and quality of life outcomes after spinal cord injury, and to what degree social and demographic variables are involved. SETTING: Data were analysed from 266 patients recruited as part of an ongoing study from specialist units in selected British, Swiss, German and Irish spinal centres. METHOD: Questionnaire booklets were administered as soon as possible after injury onset and after 12 weeks to patients with newly acquired spinal cord injuries. Individuals included had sustained their injury between the ages of 16 and 83. RESULTS: Significant improvements in outcome measures were found across the data set within the first 12 weeks after spinal cord injury and changes observed in the appraisals and coping strategies employed. Significant differences were found between participating centres on both outcome measures and in the coping and appraisal processes used. Coping and appraisal processes at 6 weeks after injury were found to contribute significantly to the variation in psychological well-being at 12 weeks after injury. CONCLUSION: This study shows the process of adjustment to spinal cord injury to begin in the early stages of rehabilitation, and initial appraisals are important to how an individual will cope with their injury and to their psychological well-being. Support is also given to the importance of psychological factors to functional outcomes.

Sense of coherence and psychological outcomes in people with spinal cord injury: appraisals and behavioural responses.

STUDY DESIGN: Longitudinal, multi-wave design. OBJECTIVES: To investigate the contribution of sense of coherence (SOC), appraisals, and behavioural responses when predicting psychological outcomes to spinal cord injury (SCI). METHOD: Patients (N=237) sustaining a SCI aged 17 or above were recruited from specialist spinal injuries centres across six European countries. Measures of SOC, appraisals, coping strategies, and psychological well-being were administered at 6 and 12 weeks post-injury and at a 1 year follow-up. RESULTS: People scoring high on SOC at 6 weeks post-injury showed significantly better psychological outcomes at 1 year post-injury and SOC showed significant relationships with appraisals at 12 weeks post-injury and coping strategies 1 year post-injury. Significant relationships were found between appraisals at 12 weeks post-injury and psychological outcomes, adaptive coping strategies were significantly related to psychological well-being at 1 year post-injury. Regression analyses found SOC, appraisals, and coping behaviours to explain 61.8% of the variance in psychological quality of life, 66.5% of the variance in depression, and 37.7% of the variance in anxiety at 1 year post-injury. CONCLUSION: This study provides further evidence in support of previous findings which suggest SOC to have a primary role in long-term psychological well-being. The relationship described here - from SOC to the appraisal of injury and subsequent behavioural responses - suggests SOC to be an influential factor in the long-term adjustment of people with SCI.

Translation and Australian validation of the spinal cord lesion-related coping strategies and emotional wellbeing questionnaires.

STUDY DESIGN: Representative community cross-sectional self-report survey of adults with spinal cord injury (SCI). OBJECTIVES: To establish semantic translation and validation of the Swedish scales--the Spinal Cord Lesion Coping Strategies Questionnaire and the Spinal Cord Lesion Emotional Wellbeing Questionnaire. SETTING: Adults on the Victorian traumatic SCI register and attendees of the nontraumatic outpatient clinic were invited to participate. METHODS: Instruments were forward and backward translated to establish semantic equivalence. Principle components analyses were undertaken. Correlation and logistic regression analyses were conducted to demonstrate validity of the instruments using both positive (high quality of life) and negative (depression and anxiety) psychological outcomes. RESULTS: The final sample consisted of 443 adults with SCI living in the community. Both instruments demonstrated acceptable psychometric properties. Univariate correlation analyses showed most of the new scale components displayed medium to large relationships in the expected direction with the psychological outcomes and the other subscales. Health status and helplessness were significant predictors of both the positive and negative psychological outcomes in the logistic regression analyses. Acceptance was significantly related to the positive outcome only. Female and incomplete tetraplegia categories were significantly and positively related to depression only. CONCLUSION: Notwithstanding a few issues with some of the subscales, the results support the usefulness of these easy to use instruments and point to ways for further development of the scales.

Condition-related coping strategies in persons with spinal cord lesion: a cross-national validation of the Spinal Cord Lesion-related Coping Strategies Questionnaire in four community samples.

STUDY DESIGN: Cross-sectional, questionnaire. OBJECTIVES: Coping strategies employed to manage the consequences of a spinal cord lesion (SCL) have been found to be distinctly related to emotional well-being. However, research and clinical implications have been hampered by the lack of cross-validated measures that are directly related to the lesion and its consequences. This study investigates the psychometric performance of the SCL-related Coping Strategies Questionnaire in four different countries. SETTING: Austria, Germany, Switzerland and UK. METHODS: The study sample comprised 355 community residing persons with SCL. Multi-trait/multi-item analysis methods and non-parametric and parametric tests were used. RESULTS: The Acceptance coping scale showed satisfactory psychometric qualities, whereas there were some problems in the Fighting spirit scale and greater problems in the Social reliance scale. Compared with the Swedish developmental sample, Acceptance was used more in the four study countries. Consistent with the original sample, Acceptance and Fighting spirit coping correlated with fewer signs of emotional distress, persons lesioned > or = 5 years tended to report more Acceptance than the newly lesioned and coping strategies were mainly unrelated to neurological status. CONCLUSION: The English and German language versions of the Acceptance coping scale were valid and reliable, whereas some translated items in the Fighting spirit scale need to be revised. Translations of the Social reliance scale need to be thoroughly revised and retested. The results add further evidence to the literature on the stability of the link between adapting life priorities (ie Acceptance) and emotional well-being.

Effects of coping on psychological outcome when controlling for background variables: a study of traumatically spinal cord lesioned persons.

STUDY DESIGN: Cross-sectional. OBJECTIVES: In a previous study we found spinal cord lesion (SCL)-related coping factors to be distinctly related to levels of SCL-related psychological outcome. However, we did not control for other potentially confounding variables. In this study we investigated effects of coping strategies on psychological outcome reactions in traumatically spinal cord lesioned persons controlling for sociodemographic, disability-related and social support variables. SETTING: The Gothenburg Spinal Injuries Unit in Sweden. METHODS: The study sample comprised 255 persons and a subsample of 157 persons. A series of stepwise multiple regression analyses were performed. RESULTS: SCL-related coping factors clearly predicted psychological outcome even when background variables were controlled. Higher levels of acceptance coping predicted decreased psychological distress and increased positive morale. Elevated social reliance coping predicted heightened distress. Higher levels of social support predicted lower feelings of helplessness. Sociodemographic and disability-related variables were weak predictors of psychological outcome with one exception: higher education predicted less bitterness and brooding. CONCLUSION: SCL-related coping remained the most important predictor of psychological outcome even when a wide range of variables was controlled. Thus we conclude that psychosocial interventions aimed at helping individuals develop their coping strategies might be of substantial value in their adjustment to SCL.

Linkages between coping and psychological outcome in the spinal cord lesioned: development of SCL-related measures.

STUDY DESIGN: Cross-sectional. OBJECTIVES: To investigate relationships between coping and mental well-being with clinical relevance to spinal cord lesion (SCL). SETTING: The Gothenburg Spinal Injuries Unit in Sweden. METHODS: The study sample comprised 274 persons. From in-depth interviews, literature reviews, and the transactional theory of stress and coping, items reflecting coping and psychological outcome, respectively were generated. Principal components factor analysis, multi-trait analysis, and structural equation modelling were used. RESULTS: The coping scale comprised three factors: Acceptance (i.e. revaluation of life values); Fighting spirit (i.e. efforts to behave independently); Social reliance (i.e. a tendency towards dependent behaviour). The outcome scale included the factors: Helplessness (i.e. feeling perplexed, out of control and low self-esteem); Intrusion (i.e. bitterness and brooding); Personal growth (i.e. positive outcomes of life crisis). Acceptance showed a positive relation to Personal growth and was inversely related to both Helplessness and Intrusion. Fighting spirit had a weak negative association to Helplessness and a weak positive association to Personal growth. Social reliance was positively related to Helplessness and Intrusion. Only Social reliance showed any association to neurological status. Those lesioned 1-4 years reported more Helplessness, Intrusion, Social reliance, and less Acceptance than those lesioned >or=5 years. CONCLUSION: Coping is related to psychological outcome in SCL. Our situational coping measure may be a candidate to assess intervention effects.