Long term outcomes after moderate to severe traumatic brain injury

Objective:?This research examined the long-term outcomes of rehabilitation patients with moderate to severe traumatic brain injury (TBI).

Design:?Retrospective cohort study.

Setting and subjects:?We examined consecutive records of persons with moderate to severe traumatic brain injury who were discharged from a large rehabilitation hospital in Pennsylvania from 1973 to 1989. We interviewed consenting participants (n?=?306) up to 24 years post-injury.

Main outcome measures:?Self-rated health, activity limitations, employment, living arrangements, marital status, Community Integration Questionnaire, and use of rehabilitation services.

Results:?Participants were most limited in activities such as managing money and shopping. Twenty-nine per cent of our participants were working full time. There were significant relationships between activity limitations and residual cognitive impairment at follow-up. Self-rated health was correlated with most instrumental activities of daily living.

Conclusion:?Our findings document health and function in a large post acute TBI population and implications for rehabilitation are discussed.     

Success in the workplace following traumatic brain injury: are we evaluating what is most important?

Purpose: Vocational outcome, and in particular full-time paid work, is considered an important indicator of successful rehabilitation following traumatic brain injury (TBI). However it has not been established that these outcomes adequately or accurately represent the values of the people with TBI. This paper describes a study exploring the experiences of individuals who attempted returning to work following TBI, with emphasis on factors that related to perceptions of 'success' or 'failure'.

Method: A phenomenological study, interviewing seven people with moderate to severe TBI was conducted. The interview data were analysed for themes relating to experiences of success or failure in the workplace. Community consultation provided additional perspectives in the interpretation and validation of results.

Results: The results of this study support in part the assumption that paid employment is indicative of success following TBI. Equally prevalent were findings that challenged this assumption, including situations where: (1) return to employment contributed to catastrophic personal events, (2) feelings of success were achieved even though paid employment was not, and (3) success in the workplace was associated with factors other than hours worked or pay earned.

Conclusions: This research suggests that the use of work placement as a measure of successful rehabilitation might misrepresent the perspective of individuals with TBI. A multi-factorial approach to evaluating vocational rehabilitation is recommended, which incorporates the subjective experience of work.     

Prediction of long-term occupational performance outcomes for adults after moderate to severe traumatic brain injury

Purpose. To examine predictors of long-term occupational performance outcomes for adults after moderate to severe traumatic brain injury (TBI).

Method. This study involved analysis of data from a retrospective cohort of adults (N = 306) with moderate to severe TBI discharged from a Pennsylvania rehabilitation treatment facility. Extensive pre-injury sociodemographic, injury-severity, post-injury personal (cognitive, physical, affective), post-injury environmental (social, institutional, physical), and post-injury occupational performance (participation in self-care, productivity, leisure activities) data were gathered from hospital records and using in-person interviews. Interviews occurred at a mean time of 14 (range, 7-24) years post-injury. Hierarchical multiple regression analysis was used to investigate determinants of long-term occupational performance outcomes.

Results. Pre-injury behavioural problems, male gender, post-injury cognitive and physical deficits, and lack of access to transportation were significant independent predictors of worse occupational performance outcomes.

Conclusions. The study supports the use of a comprehensive model for long-term outcomes after TBI where pre-injury characteristics and post-injury cognitive and physical characteristics account for the greatest proportion of explained variance.     

Investigation of factors related to employment outcome following traumatic brain injury: a critical review and conceptual model

Purpose: The purpose of this article is to critically review the literature to examine factors that are most consistently related to employment outcome following traumatic brain injury (TBI), with a particular focus on metacognitive skills. It also aims to develop a conceptual model of factors related to employment outcome.

Method: The first stage of the review considered 85 studies published between 1980 and December 2003 which investigated factors associated with employment outcome following TBI. English-language studies were identified through searches of Medline and PsycINFO, as well as manual searches of journals and reference lists. The studies were evaluated and rated by two independent raters (Kappa = 0.835) according to the quality of their methodology based upon nine criteria. Fifty studies met the criteria for inclusion in the second stage of the review, which examined the relationship between a broad range of variables and employment outcome.

Results: The factors most consistently associated with employment outcome included pre-injury occupational status, functional status at discharge, global cognitive functioning, perceptual ability, executive functioning, involvement in vocational rehabilitation services and emotional status.

Conclusions: A conceptual model is presented which emphasises the importance of metacognitive, emotional and social environment factors for improving employment outcome.     

The influence of severe malnutrition on rehabilitation in patients with severe head injury

Objective: The purpose of the study was to evaluate the consequences of severe malnutrition in patients with severe head injury during rehabilitation.

Patients and methods: The data were collected from medical records of patients admitted to the neurorehabilitation unit over the last 5 years. Twenty of 1850 patients had severe malnutrion, the body mass index (BMI) of these patients were under 15 (10 - 14) kg/m². The majority of patients suffered traumatic brain damage (17/20). Thirteen patients arrived with percutaneous endoscopic gastrotomy /PEG, three nasogastric tube in 3 cases we placed PEG. The nutritional strategy included a high-calorie diet, by means of bolus feeding five times during the day, continuous feeding during the night; the daily intake target being more than 2500 kcal.

Results: During rehabilitation treatment the majority of patients (13/20) revealed weight gain with a rate of 0.5 - 2 kg/week. The following complications were treated during the rehabilitation phase: 20 pressure sores, 20 contractures, 11 urinal infections, 6 cases of pneumonia, 2 of purulent bronchitis, 6 of sepsis, 1 penoscrotal abscess, epidydymitis, and 1 case of purulent arthritis. The patients required total assistance at the time of admission. At discharge 10 patients remained completely dependent, 6 patients needed minimal assistance, and 4 patients could perform daily activities independently. The average length of stay in our unit was 78/6 - 150/days.

Conclusion: Patients with head injury suffering from severe malnutrition exhibit serious complications at the time of admission as well as during rehabilitation treatment. The patients were very difficult to mobilize. The length of stay at the rehabilitation unit was 28 days longer when complicated by malnutrition, than head injuries showing normal nutritional status. These findings underline the importance of adequate nutrition in patients with head injury in both the acute ward and in the rehabilitation unit.     

The experiences of treatment from other people as narrated by people with moderate or severe traumatic brain injury and their close relatives

Purpose. The aim of this study was to describe the treatment from other people as experienced by people with moderate or severe traumatic brain injury (TBI) and their close relatives.

Method. Twelve people with moderate or severe TBI and eight of their close relatives were interviewed. The interviews were analysed using thematic content analysis.

Results. The results were described by the means of two themes: being excluded and missing confirmation. People with TBI and their close relatives had experiences of being avoided, being ruled by the authorities, being met with distrustfulness and being misjudged. They also searched for answers and longed for the right kind of help. People who listened to them, believed them and tried to understand and help them were appreciated.

Conclusions. This study showed a lack of treatment which promotes well-being of the people with TBI and their close relatives. They experienced bad treatment also from authorities. Therefore, we emphasize that authorities should continuously reflect on how to make their practice a place which promotes dignity. Treatment of people with TBI and close relatives may be improved by increased knowledge about TBI, living with it and being a close relative to a person with TBI. This is a challenge to health care and rehabilitation professionals.     

Paediatric traumatic brain injury in South Africa: some thoughts and considerations

Purpose: This paper endeavours to describe the socio-political and economic backdrop to the assessment and management of traumatic brain injury (TBI) in children in South Africa.

Outcomes: The argument put forward is that huge disparities in socio-economic status, diverse socio-cultural influences, and widely differing educational systems and educational attainment which characterize the country's population, render the management of TBI different from approaches adopted in developed countries. The main causes of TBI can be attributed to the high rates of violence in the country, as well as an inordinately high incidence of motor vehicle accidents. Compensation through existing national legislative and insurance agencies is unavailable to most of the population, and markedly insufficient in many cases. The access to medical care and rehabilitation is inadequate for the majority of South African children, although there are valiant efforts on the part of professionals working within the primary health care model to provide the support to the children and their families not offered by existing educational and school structures.

Conclusion: The impact of the HIV/AIDS pandemic on the clinical picture of children and their families is profound and guides many of the decisions that are made by health care professionals. Given this bleak scenario, a re-focus on the strengths of existing structures and the creation of new possibilities is suggested as a positive and constructive approach to prevention, rehabilitation, and education.     

Return to work following traumatic brain injury: trends and challenges

Purpose. The aim of this paper is to present the current knowledge regarding return to work (RTW) following traumatic brain injury (TBI).

Method. Based on a Medline search, the authors reviewed the current TBI rehabilitation literature regarding (a) predictive factors for successful RTW, and (b) current concepts in rehabilitative strategies for successful RTW.

Results. The functional consequences to the victim of traumatic brain injury (TBI) can be severe. Intensive rehabilitative efforts typically emphasize the early phase and address mainly the accompanying functional deficits in the realm of basic activities of daily living and mobility. An otherwise successful medical rehabilitation may end unsuccessfully because of the failure to return to work, with profound consequences to the individual and family, both economic and psychosocial. Even mild TBI may cause lasting problems in tasks calling for sustained attention. There appears to be a complex interaction between pre-morbid characteristics, injury factors, post injury impairments, personal and environmental factors in TBI patients, which influences RTW outcomes in ways that make prediction difficult. Injury severity and lack of self-awareness appear to be the most significant indicators of failure to RTW. Several medical, psychosocial and rehabilitative therapies are currently being implemented in rehabilitation settings which improve the chances of returning to work.

Conclusion. Accurate prediction of whether a particular TBI patient will successfully return to work is not feasible, with RTW rates in the 12 - 70% range. A significant proportion of TBI patients, including those who are severely injured, are able to return to productive employment if sufficient and appropriate effort is invested. A comprehensive approach - medical and psychosocial - eventually entailing adequate vocational rehabilitation with supported employment can improve outcomes.     

'A lifestyle coat-hanger': a phenomenological study of the meanings of artwork for women coping with chronic illness and disability

Purpose: The purpose of this phenomenological enquiry was to explore the meanings and functions of art for a group of women living with disabling chronic illness. Participants were recruited on the basis that they considered artwork as central to their current well-being.

Method: Thirty women were interviewed and five submitted written narratives. Interpretative phenomenological analysis was carried out.

Results: About half of the participants had taken up their preferred artistic occupation since the onset of illness. Participants described their artwork as contributing to their health and well-being in many diverse ways. Art filled occupational voids, distracted thoughts away from illness, promoted the experience of flow and spontaneity, enabled the expression of grief, maintained a positive identity, and extended social networks. Its value was conceptualised by one participant as a 'lifestyle coat-hanger' organising numerous further roles and activities that gave purpose to life. Art was more than cathartic. It offered a versatile means of overcoming the restrictions imposed by illness on self and lifestyle, in many cases creating a more enriched lifestyle than before.

Conclusion: The findings may encourage professionals working in health and rehabilitation settings to assist clients in identifying meaningful, creative occupations that are feasible within the limits imposed by illness or injury.     

Performance of activities of daily living in multiple sclerosis

Purpose: To assess the performance of activities of daily living (ADL) in individuals with moderate to severe multiple sclerosis (MS).

Method: A total of 12 men and 32 women with MS (Expanded Disability Status Scale, EDSS, 6.0 - 8.5) were studied. The performance of personal ADL (P-ADL) and instrumental ADL (I-ADL) was assessed with the Functional Independence Measure (FIM) and the Assessment of Motor and Process Skills (AMPS).

Results: Twenty-four of the 44 individuals were rated dependent in P-ADL by the FIM motor score, mainly due to limitations in some areas of self-care and in transfers and locomotion. Only three individuals were rated dependent by the FIM cognitive score, indicating no or little cognitive disability. Two thirds of the individuals who were rated independent/modified independent in P-ADL by the FIM were rated dependent in I-ADL by the AMPS. Only the FIM motor score was significantly related to the EDSS score, indicating that ADL performance and disease severity is weakly related.

Conclusions: Moderate to severe MS reduces the ability to perform both P-ADL and I-ADL. An individual with MS can be independent in P-ADL but still unable to perform I-ADL satisfactorily. Assessments of both P-ADL and I-ADL are advocated to evaluate ADL performance in order to implement appropriate management strategies for individuals with MS.     

Functional outcome in patients with critical illness polyneuropathy

Purpose: To evaluate the functional outcome of intensive care patients with critical illness polyneuropathy (CIP), 6 and 12 months after the onset.

Methods: Design: A prospective observational cohort study and a cross-sectional study.

Setting: University hospital in the Netherlands.

Patients: Eight consecutive intensive care patients with CIP for the prospective study and eight patients diagnosed with CIP in the past 6 months for the cross-sectional study.

Main outcome measures: Functional outcome regarding body functions and structure, activities, participation and perceived quality of life.

Results: Nine patients (56%) died within one year. Functional outcome, participation and subjective health status in survivors varied widely at 6 and 12 months. After 12 months, physical functioning was improved in all patients. However activities related to mobility outdoors, autonomy, participation and quality of life were restricted in most patients.

Conclusions: The majority of survivors have persistent functional disabilities in activities, reduced quality of life and restrictions in autonomy and participation one year after the onset of CIP. Prolonged rehabilitation treatment is necessary for an increasing number of intensive care patients who develop CIP, in order to reduce handicaps and achieve optimal autonomy and social participation.     

Health problems of persons with spinal cord injury living in the Netherlands

Purpose. To investigate the prevalence of health problems among persons with spinal cord injury (SCI) living in the Netherlands, to identify the problems experienced as most important, and to analyse the experienced impact of these most important problems on daily activities and social life.

Method. Postal survey among all members of the Dutch Association of Patients with SCI. The questionnaire focused on 26 health problems: 13 secondary impairments, 8 problems of daily living and 5 psychosocial problems.

Results. The respondents (response rate 45.5%, 454 persons) experienced an average of 8 health problems. The most frequently occurring problems regarded bladder and bowel regulation, spasms, pain, oedema and sexuality. Except for oedema, these problems were also most often cited as the most important. The most disabling condition for both daily and social activities was pain. Few significant relationships were found between the prevalence of health problems and the level, completeness and duration of the injury or gender.

Conclusion. Persons with SCI living in the community experience many health problems and limitations in daily activities and social life due to these problems. The occurrence of these problems does not diminish with increasing time after injury. This strongly emphasises the need for follow-up care.     

Agricultural workers' return to work following spinal cord injury: a comparison with other industry workers

Purpose: To investigate the impact of spinal cord injury on employment outcomes as experienced by agricultural workers in comparison with persons employed in other industries. Because of the challenges associated with working in many of the agricultural industries, it was anticipated that agricultural workers would achieve inferior return-to-work outcomes.

Method: Survey of all employed persons who experienced a traumatic spinal cord injury in southeastern Australia between 1990 and 1996 (inclusive).

Results: Contrary to expectation, agricultural workers had a significantly higher rate of return to work (61.7% vs. 41.1%). However, an investigation into the hours spent working and agricultural workers' satisfaction with their employment activities, indicated that most were underemployed and had the potential to achieve even better outcomes.

Conclusion: Results indicate that more can be done to help injured agricultural workers achieve their employment potential.     

Leisure-time physical activity and secondary conditions in women with physical disabilities

Purpose: To examine the relationship between secondary conditions and leisure-time physical activity participation (LTPA) in women with physical disabilities.

Method: A survey was conducted in a metropolitan urban USA area of women (n = 170) with physical disabilities including MS, CP, polio, arthritis, TBI, and CVA among others and aged 21 - 65 years. Outcome measures were LTPA, secondary conditions (numbers and severity), and functional status.

Results: Respondents experienced 11.99 ( ± 6.05) secondary conditions in the past year, self-rated their severity as 'moderate problems', and reported moderate levels of functional impairment. LTPA participation (excluding calisthenics/exercise) was reported to be 2.90 ( ± 5.12) times/week with 39.4% reporting no participation. After controlling for the interaction between severity of secondary conditions and functional status, the secondary conditions of physical deconditioning and isolation were significantly and inversely related to LTPA participation (r = - 0.164, p = 0.036; r = - 0.156, p = 0.045, respectively).

Conclusion: Reported secondary conditions of physical deconditioning and isolation are inversely related to the ability of moderately impaired women with physical disabilities to participate in LTPA when functional status was controlled and should be considered in efforts to increase involvement in this health promoting behaviour.     

Women on sickness absence--views of possibilities and obstacles for returning to work. A focus group study

Purpose: The aim was to learn how women on sickness absence due to work related strain perceive and describe their possibilities and obstacles for returning to work.

Method: The focus group method was used. Five groups were conducted and each group met at one occasion. Twenty women participated in total.

Results: Three different themes were found. In 'The process of losing control' the participants describe the process from controlling every day living, to total loss of control of private and working life. The second theme, 'Not finding alternatives', deals with the difficulties of finding an alternative way back to work. 'Mastering life as a whole' contains strategies for regaining control over daily activities and life as a whole. The results show that personal as well as environmental factors have an impact for returning to work.

Conclusions: In this study we have received an understanding of the complex situation of being on sickness absence due to work related strain. We have learned the importance of recognizing the context of the individual and understanding the interplay between the person and the environment. As professionals in rehabilitation we can use this knowledge to create a rehabilitation programme supporting people back to work.     

Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults

Purpose: Exploring the experiences of Australian adolescents with Cystic Fibrosis (CF) as they made the transition from paediatric to adult care. This often traumatic change of care was examined from the perspective of the two types of care, paediatric and adult, elements of a transition programme if available and psychosocial factors that may affect the transition.

Method: Focused-in-depth interviews were conducted with six young adults with CF(19 - 34 years), asking them to describe their experiences during the transition period.

Results: Thematic analysis of the transcribed interviews indicated that the four main areas that affected the transition experiences of the participants were paediatric and adult health care, the elements included in the transition programme, and psychosocial factors.

Conclusions: The relationship of the patient with their paediatric doctor, the doctor's attitude towards the transition and the delivery of age-appropriate care appeared to influence the experiences of adolescents as they changed to adult care. Successful elements of a transition programme, if it was offered, were the orientation tours, the provision of information and the presence of a familiar face at adult clinics. Transition experiences of individuals had potential effects on their psychological and physical well-being so that, in order to maximize quality of care, health professionals must be aware of factors which may improve transition experiences.     

Quality assessment in rehabilitation centres: the indicator system 'Quality Profile'

Purpose: An indicator system for measuring the quality of rehabilitation centres ('Quality Profile' of rehabilitation centres) is presented. The implementation of the concept is explained with the aid of results regarding structural, process and outcome quality in 26 cardiac and orthopaedic rehabilitation centres.

Method: In each centre, structural, process and outcome quality, including patient and employee satisfaction, are measured. Process quality is determined by means of a peer review procedure that includes examination of 20 randomly selected cases on the basis of discharge reports and therapy plans. The medical outcome is measured by a prospective study with three measurement time points and a sample of approx. N = 200 patients per centre.

Results: Overall, the level of quality of the medical rehabilitation in the institutions participating in the study must be considered high. However, on almost all quality dimensions, even after a risk adjustment there are clear differences between centres, which point to the usefulness of benchmarking analyses and the need for improvements in quality in some centres.

Conclusions: The indicator system presented is a starting-point for comprehensive, comparative measurement of the quality of in-patient rehabilitation centres that, with regard to its principles, also appears applicable to other areas of health care.