Quality of life 10 years after a very severe traumatic brain injury (TBI): the perspective of the injured and the closest relative

This study is a further follow-up of a group of 15 very severely injured TBI patients who have earlier been followed-up 5 years after the injury, and their closest relatives. The aim of this study was to evaluate the factors related to the quality of life of the injured and the strain felt by the relatives. The information was gathered by questionnaires for the injured and the relative and clinical ratings based on the observations of a clinician. The self-reported quality of life of both the injured and their closest relatives was rather high in spite of the various physical, cognitive and emotional/behavioral disturbances. However, the strain felt by many of the relatives was still high 10 years after the injury although it had decreased over the years. The neurobehavioral and emotional disturbances had the most significant effect on the quality of life of the injured and strain felt by the relative. The relationship between the quality of life of the injured and strain felt by the relative was not linear. The implications of the findings for developing different forms of rehabilitation and support systems is discussed.     

Computed tomography of the normal feline nasal cavity and paranasal sinuses

We studied physical, cognitive, emotional and quality-of-life changes noted by relatives in a sample of 65 severely traumatic brain injured (TBI) patients several years after injury. The purpose of the present study was to evaluate the families perception of these changes and their need for information concerning the consequences of TBI. Our results indicated that the perceived changes in behavioural and affective symptoms and in the patient's quality of life were most closely associated with the need expressed by family members for information concerning, TBI. We also found that family relationships were especially affected by problems in the behavioral and affective domain, and the decrease in patient quality of life, as reported by relatives. These findings underline the importance of providing the relatives of TBI patients with information about the consequences of the injury with particular emphasis on behavioural and emotional disturbances, in order that they might cope better with these problems.     

Communal behaviors and psychological adjustment of family caregivers and persons with spinal cord injury.

Objective: Examined the influence of mutual communal behaviors on the adjustment reported by persons with spinal cord injury (SCI) and their family caregivers. Previous research has found that persons who have a history of mutually communal behaviors in relationships may react differently to relationship changes after an acquired physical disability than dyads with few communal behaviors. Method: Family caregivers and persons with SCI were administered measures of mutual communal behaviors, depression, and life satisfaction. Structural equation modeling was used to test the relations among caregivers' communal behaviors and care recipients' communal behaviors, depression, and life satisfaction. Results: Caregiver and care recipient reports of communal behaviors were not significantly correlated. Significant paths indicated that care recipients' communal behavior scores were positively associated with their life satisfaction, and care recipients' depression was inversely associated with their life satisfaction. Caregivers' communal behavior scores were unrelated to their self-reported adjustment. Conclusions: Caregiver-care recipient dyads may differ in their perceptions of communal behaviors in their relationships. Although care recipient reports of communal behavior may be related to their life satisfaction, communal behaviors may not serve a similar function among caregivers of persons with SCI. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

The reliability and validity of the Community Integration Measure in persons with traumatic brain injury.

Objective: To investigate the psychometric properties of the Community Integration Measure (CIM), a scale that assesses self-perceived quality of community integration, among persons with traumatic brain injury (TBI). Method: Persons (N = 279) with TBI completed the CIM, as well as other measures of community integration and quality of life, and were followed up to 15 years postinjury. Results: The CIM was found to be a reliable instrument with adequate internal consistency. Validity was demonstrated in its relationship to other measures of community integration and life satisfaction. Utility was evident in its prediction of perceived social support. Conclusion: Results suggest that the CIM is an adequate measure of community integration for persons with histories of TBI of up to 15 years. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Quality of life after spinal cord injury: A qualitative study.

ABSTRACT. Objective: To describe the subjective quality of life (QOL) of persons with a spinal cord injury (SCI). Study Design: Qualitative analysis of transcribed interviews. Participants: Forty community-dwellers with SCI. Results: Few participants could define QOL, but most could identify indicators of QOL and provided clear ratings of their own QOL. Individuals were grouped into three QOL ratings categories (excellent or very good, good or fair, less than satisfactory) and compared in terms of issues reported to affect QOL. Conclusions: Financial security, material assets, meaningful social roles, and a longer time since injury appear to be prerequisites for high-level QOL. Personal growth and positive value changes following SCI offset the economic and social disadvantages of persons in the intermediate QOL group. Financial stability, material resources, and emotional and spiritual "capital" were in short supply for many persons in the low QOL group. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Quality of life for individuals with traumatic brain injury: comparison with others living in the community

OBJECTIVES: To provide a conceptual overview of approaches to quality of life (QOL) measurement and an extensive review of research relating to QOL after TBI; to document subjective QOL of individuals with traumatic brain injury (TBI); to explore how subjective QOL differs for people with TBI in comparison to individuals with no disability (ND) and those with spinal cord injury (SCI); and to document the perceptions of unmet important needs and the relationship between such perceptions and subjective QOL. DESIGN: Interview-based data focusing on current perceptions of QOL and unmet important needs, obtained from individuals with TBI, SCI, or ND. Covariance and partial regression analyses were used to explore group differences and to document relationships between variables. SETTING: Individuals drawn from diverse communities across New York State. PARTICIPANTS: TBI group: 430 individuals who identified themselves as having TBI; SCI group: 101 individuals with spinal cord injury; ND group: 187 people who identified themselves as having no disability. Participants were recruited through recruitment ads in general circulation newspapers and newsletters and through contacting a wide variety of community agencies. MAIN OUTCOME MEASURES: Two summary QOL indicators: a Global QOL Measure based on two items tapping the individual's emotion-based view of QOL, and a summary score adapted from Flanagan"s Scale of Needs, reflecting the individual's perceptions of total unmet important needs. RESULTS: Both summary QOL indicators were correlated with demographic characteristics. Unmet important needs were stronger in the TBI group than in the SCI and ND groups. Most areas of unmet important need were moderately correlated with the summary QOL indicators. Analyses of covariance showed that severity of injury was a more powerful modulator of post-TBI QOL judgments than the mere fact of TBI. For example, those with the most severe injury (ie, loss of consciousness [LOC] >1 month) rated their QOL similar to that in the ND group, whereas individuals who had experienced only a brief LOC (<20 minutes) viewed their QOL as significantly lower than that in the ND and SCI groups and lower than other TBI severity subgroups. CONCLUSIONS: This exploration of subjective QOL strengthens the argument that after TBI, the insider"s reaction to injury varies greatly within the population. Thus, severity of injury strongly affects perceptions of QOL. The use of a multimethod approach for exploring the reactions and perceptions of QOL has proven useful in this study.     

The relation between spirituality and quality of life among individuals with spinal cord injury.

Objective: To determine how spiritual-based coping relates to quality of life in individuals with spinal cord injury (SCI). Design, Setting, & Participants: A telephone interview of 75 participants, primarily Caucasian single men aged 19 to 71 (enrolled in the Northern New Jersey Spinal Cord Injury Model System). Measures: Ellison's Spiritual Well-Being Scale, Duke Health Profile, Craig Handicap Assessment and Reporting Technique, Diener's Satisfaction With Life Survey. Results: Virtually all participants (98.7%) reported using some form of spiritual-based coping. Quality of life was highest among participants who use existential spiritual as opposed to religious spiritual coping. In particular, existential spirituality shared 27% variance with overall perceived life quality. Conclusions: Spiritual-based coping might be encouraged as a possible strategy to improve life quality. Clinicians should be cognizant of ongoing spiritual practices among persons with SCI. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Self and parent ratings of executive functioning after adolescent traumatic brain injury.

Objective: To examine the level of agreement between adolescents with traumatic brain injury (TBI) and their parents in standardized ratings of executive functioning, and to determine correlates of discrepancies between those ratings. Participants: Ninety-eight 11- to 16-year-old adolescents with TBI and their parents, and 97 neuropsychologically healthy controls. Method: Five-year consecutive series of rehabilitation referrals for TBI. Measures: Behavior Rating Inventory of Executive Function–Self Report (BRIEF–SR) and Behavior Rating Inventory of Executive Function (BRIEF) parent report versions. Results: Self and parent ratings were moderately positively correlated in both the TBI group and the control group, but parents generally identified more executive dysfunction than did the adolescents. Parent-adolescent discrepancies were statistically significantly greater in the TBI group than in the control group on the Metacognitive index but not the Behavioral Regulation index. The degree of the former discrepancy was predicted by duration of coma in the TBI group. Conclusions: Adolescents with more severe TBI may underestimate their own degree of executive dysfunction in daily life, particularly aspects of metacognitive abilities, possibly, in part, because of an organic-based lack of deficit awareness. (PsycINFO Database Record (c) 2011 APA, all rights reserved)     

Health behavior in persons with spinal cord injury: development and initial validation of an outcome measure

OBJECTIVE: To describe the development and initial psychometric properties of a new outcome measure for health behaviors that delay or prevent secondary impairments associated with spinal cord injury (SCI). DESIGN: Persons with SCI were surveyed during routine annual physical evaluations. SETTING: Veterans Affairs Medical Center Spinal Cord Injury Unit, which specializes in primary care for persons with SCI. PARTICIPANTS: Forty-nine persons with SCI, aged 19-73 years, 1-50 years post-SCI. MAIN OUTCOME MEASURE: The newly developed Spinal Cord Injury Lifestyle Scale (SCILS). RESULTS: Internal consistency is high (alpha = 0.81). Correlations between clinicians' ratings of participants' health behavior and the new SCILS provide preliminary support for construct validity. CONCLUSIONS: The SCILS is a brief, self-report measure of health-related behavior in persons with SCI. It is a promising new outcome measure to evaluate the effectiveness of clinical and educational efforts for health maintenance and prevention of secondary impairments associated with SCI.     

Girls with spinal cord injury: Social and job-related participation and psychosocial outcomes.

Objective: To examine social and job-related participation among girls with spinal cord injury (SCI) and relationships between participation, depression, and quality of life. Participants and Setting: This sample included 97 girls (aged 7–17 years) who had sustained SCI at least 1 year prior to interview, and who were receiving care at three pediatric SCI centers within a single hospital system. Measures: Participants completed the Children’s Assessment of Participation and Enjoyment, Children’s Depression Inventory, and Pediatric Quality of Life Inventory. Caregivers completed a demographics form. Results: Girls participated more often in social activities than in job-related activities and participated in social activities with a more diverse group and further from home. A broader context of social participation was related to lower depression, which in turn was related to higher quality of life. Higher frequency of job-related participation was related to lower depression, which in turn was related to higher quality of life. Conclusions: Social and job-related participation are related to psychosocial outcomes among girls with SCI. Participation in social and job-related activities should be a focus of rehabilitation for girls, because the skills gained from this involvement may help build resilience against future obstacles to socialization and employment. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Predicting premorbid neuropsychological functioning following pediatric traumatic brain injury

This study examined the prediction of premorbid neuropsychological functioning using data from an ongoing prospective study of traumatic brain injuries (TBI) in children ages 6 to 12 years. Prediction equations were derived based on 80 children with orthopedic injuries (OI), who served as a comparison group for the children with TBI. Collectively, parent ratings of premorbid school performance, maternal ethnicity, family socioeconomic status, and children's word recognition skill predicted from 13% to 45% of the variance in three measures of neuropsychological functioning. The regression equations were used to compute predicted scores among 109 children with TBI. Actual scores fell significantly below predicted scores among children with TBI, and the magnitude of the deficits was correlated with injury severity. Premorbid neuropsychological functioning can be predicted in children with TBI, but with less precision than would be desirable for clinical purposes.     

Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers

STUDY OBJECTIVES: To measure emergency care providers' attitudes toward quality of life after spinal cord injury (SCI) and to determine if their perceptions influence the care they provide. DESIGN: A closed-ended questionnaire. SETTING AND PARTICIPANTS: Two hundred thirty-three emergency nurses, emergency medicine technicians, emergency medicine residents, and attending physicians at three level I trauma centers were surveyed. Their responses were compared with previously reported quality-of-life ratings of a group of 128 high-level SCI survivors. MEASUREMENTS AND RESULTS: One hundred fifty-three emergency care providers completed the survey (response rate, 63%). Forty-one percent believed that resuscitation efforts after severe SCI are too aggressive, and 28% believed that future quality of life should be a factor in determining the interventions that should be provided. If they sustained severe SCIs themselves, 22% of providers would want nothing done to ensure their survival, and 23% would want pain relief only. Only 18% imagined they would be glad to be alive with a severe SCI, compared with 92% of a true SCI comparison group. Seventeen percent of providers anticipated an average or better quality of life compared with 86% of the actual SCI comparison group. CONCLUSION: The quality of life, self-esteem, and outcomes that emergency health care providers imaging after SCI are considerably more negative than those reported by SCI survivors. Because providers' knowledge and attitudes may affect the care they provide and may influence patients and families struggling with critical treatment decisions, emergency care providers must be aware of outcomes, well-being, and life satisfaction following severe SCI.     

Executive functions and social competence in young children 6 months following traumatic brain injury.

Objective: This study examined the impact of traumatic brain injury (TBI) in young children on executive functions and social competence, and particularly on the role of executive functions as a predictor of social competence. Method: Data were drawn from a prospective, longitudinal study. Participants were children between the ages of 3 years 0 months and 6 years 11 months at time of injury. The initial sample included 23 with severe TBI, 64 with moderate TBI, and 119 with orthopedic injuries (OI). All participants were assessed at 3 and 6 months postinjury. Executive functions were assessed using neuropsychological tests (Delayed Alternation task and Shape School) and parent ratings on the Behavior Rating Inventory of Executive Function and Child Behavior Questionnaire. Parents rated children's social competence on the Adaptive Behavior Assessment System, Preschool and Kindergarten Behavior Scales, and Home and Community Social Behavior Scales. Results: Children with severe TBI displayed more negative outcomes than children with OI on neuropsychological tests, ratings of executive functions, and ratings of social competence (η2 ranged from .03 to .11). Neuropsychological tests of executive functions had significant but weak relationships with behavioral ratings of executive functions (ΔR2 ranged from .06 to .08). Behavioral ratings of executive functions were strongly related to social competence (ΔR2 ranged from .32 to .42), although shared rater and method variance likely contributed to these associations. Conclusions: Severe TBI in young children negatively impacts executive functions and social competence. Executive functions may be an important determinant of social competence following TBI. (PsycINFO Database Record (c) 2011 APA, all rights reserved)     

Using exercise to enhance subjective well-being among people with spinal cord injury: The mediating influences of stress and pain.

Purpose: To assess exercise as a strategy for reducing pain and improving subjective well-being (SWB) among people with spinal cord injury (SCI). Design: Randomized controlled trial. Method and Participants: Thirty-four individuals with SCI. Exercisers performed aerobic and resistance training twice weekly, whereas wait-list controls maintained their usual level of activity. Results: Analyses of covariance indicated that after 3 months, exercisers reported less pain, depression, and stress, as well as greater perceived quality of life and better physical self-concept than controls (ps     

Sexuality and quality of life. Results from the quality of life-study of 4,626 Danes aged 31-33 years born at Rigshospitalet 1959-1961

From a cohort of 7222 31-33-year-olds we obtained answers to a 317-item quality-of-life questionnaire that included five questions on sexuality from 4626 respondents, giving a response rate of 64.1%. Among the women, 1.6% said they were bisexual and 1.4% homosexual; the corresponding figures for men were 1.3% and 1.1% respectively. The quality of life of bisexual persons was somewhat lower than the cohort mean (W: 15.6% lower, M: 19.1% lower), and that of homosexual persons was a little lower than the cohort mean (W: 8.5% lower, M: 3.7% lower). About a quarter of all respondents said they had sexual problems. Most frequent among the women were reduced sexual desire (17.0%) and the absence of a suitable sex partner (7.6%), and among the men, the absence of a suitable sex partner (12.5%) and premature ejaculation (5.5%). The quality of life of persons with sexual problems was measured to be from 7.0% to 24.2% lower than the cohort mean (as expressed in terms of this mean). The intermediate-sized relationship between sexual problems and quality of life suggests that such problems can be symptoms of reduced quality of life, rather than medical problems to be tackled as such. Implications for quality life-sensitive clinical practice are discussed.     

Family satisfaction predicts life satisfaction trajectories over the first 5 years after traumatic brain injury.

Objectives: Examined the influence of functional impairment, stable marital status, and family satisfaction on life satisfaction trajectories for 609 individuals (435 men, 174 women) over the first 5 years after traumatic brain injury (TBI). Measures: Participants completed the Family Satisfaction Scale (FSS), Functional Independence Measure (FIM), and the Life Satisfaction Index (LSI) at years 1, 2, 4, and 5 after sustaining a TBI. Results: Trajectory modeling revealed that higher family satisfaction was associated with increases in life satisfaction for individuals with less functional impairment. Stable marital status was not significantly associated with life satisfaction trajectories. Implications: Family satisfaction appears to have pronounced beneficial effects on life satisfaction for persons with less functional impairment after TBI regardless of marital status. In contrast, a stable marriage appears to have no apparent benefits to self-reported life satisfaction over the first 5 years post-TBI. Theoretical and clinical implications of these results are discussed. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Comparing two measures of depression in spinal cord injury.

Compared 2 measures of depression, the Zung Self-Rating Depression Scale (SRDS) and the Brief Symptom Inventory (BSI), and discussed their use with (1) 162 spinal cord injury (SCI) outpatients and (2) 30 SCI inpatients. Sample 2 was used to study the predictor validity of the tests based on clinicians' ratings of Ss' depression status. Results indicate a fair degree of correlation between these tests. Fairly good test reliability was also found. The SRDS was more clearly delineated into distinct conceptual factors than the BSI. An analysis of predictive validities of the 2 tests using test scores and independent clinician ratings suggests that the BSI and the SRDS were the most useful predictors of depression among SCI Ss. However, the SRDS was superior for identifying SCI persons at risk of being depressed during or after rehabilitation hospitalization. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Long-term outcomes and life satisfaction of adults who had pediatric spinal cord injuries

OBJECTIVE: To determine long-term outcomes and life satisfaction of adults who sustained pediatric spinal cord injury (SCI). DESIGN: Structured interview of adults who were 25 years or older who had pediatric SCI. SETTING: Community. PARTICIPANTS: A convenience sample of 46 patients from a total of 81 patients who received care in an SCI program: 1 refused participation, 4 died, and 30 were lost to follow-up. MAIN OUTCOME MEASURES: A structured questionnaire including physical, psychosocial, and medical information. The Craig Handicap Assessment and Reporting Technique and two measures of life satisfaction were also administered. RESULTS: Participants were 25 to 34 years old, mean 27 years. Thirty-two had tetraplegia and 14 had paraplegia. Thirty-one were men. Mean years of education was 14. Fifty-four percent were employed, 48% lived independently, and 15% were married. Life satisfaction was associated with education, income, satisfaction with employment, and social/recreation opportunities, and was inversely associated with some medical complications. Life satisfaction was not significantly associated with level of injury, age at injury, or duration of injury. CONCLUSIONS: Individuals who had pediatric SCI, much like adult-onset SCI, have the greatest opportunity for a satisfying adult life if rehabilitation emphasizes psychosocial factors such as education, employment, and long-term health management.