Restorative Neurology and Neuroscience - Volume 20, issue 3-4

Authors: Neugebauer, E. | Bouillon, B. | Bullinger, M. | Wood-Dauphineé, S. | Lefering, R.

Article Type: Research Article

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 81-81, 2002

Authors: Neugebauer, E.

Article Type: Other

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 83-84, 2002

Authors: Neugebauer, E. | Lefering, R. | Bouillon, B. | Bullinger, M. | Wood-Dauphinee, S.

Article Type: Research Article

Abstract: From September 29 until October 2, 1999, a group of international experts met in Wermelskirchen, Germany, for a consensus conference on "Quality of Life after Multiple Trauma". The meeting was initiated and sponsored by the German Ministry of Education and Research. It was the aim of the group to develop evidence-based guidelines for the systematic evaluation and application of Quality of Life (QoL) measures in patients with severe trauma. The present paper describes the format of …the meeting, the selection of the participants, the time schedule, and the proceeding, in order to facilitate the interpretation of the results. The work was structured according to the different types of injury: traumatic brain injury (TBI), multiple injuries without TBI, spinal cord injury, and children with TBI. For each injury group, a specific task force group with 9--13 members was established, consisting of methodologists as well as clinicians from different disciplines. The conference was organised as an altenate sequence of plenary sessions and small working group meetings. The work itself was structured according to the following five questions which have been agreed on and distributed to the participants in advance: 1. What is the major problem (ranking) of the patient at different time points after the accident? 2. Which domains of QoL are affected in the sequelae of trauma? 3. Which instruments are useful to evaluate QoL in trauma patients? 4. Which studies have assessed QoL aspects with which instruments? 5. What instruments should be used in which patient group at what time? The moderators of each task force group summarised the respective results and tried to give recommendations for future application of QoL assessment in trauma patients. As far as possible, the statements should be based on the existing evidence. Furthermore, the groups should recommend QoL measures for use across different patient groups and time points. Show more

Keywords: quality of life, consensus conference, multiple injuries

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 87-92, 2002

Authors: Bullinger, Monika

Article Type: Research Article

Abstract: Health-related quality of life is increasingly accepted as relevant endpoint in medicine. Available work pertains to development and psychometric testing of measurement instruments. Theoretical papers are largely missing, inclusion of instruments in clinical trials, however, has begun now, especially in oncology and cardiology. Based on a review of the available literature, areas of application of quality of life research are described. Focus of attention are conceptual, methodological and practical challenges as well as …the contribution of quality of life research to evaluating the results of medical treatment. Show more

Keywords: quality of life, outcome evaluation, assessment, clinical trials

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 93-101, 2002

Authors: Ragnarsson, Kristjan T.

Article Type: Research Article

Abstract: In 1998, the National Institute for Health (NIH) organized a consensus conference about the rehabilitation of persons with traumatic brain injury (TBI). The conference results are based on an extensive bibliography from the scientific literature and presentations at the conference. The focus of this conference was the evaluation of rehabilitative measures for the cognitive and behavioral consequences of TBI, and the extent to which specific interventions are supported by existing evidence. Specifically, the conference …considered the following aspects and their implications for rehabilitation -- the epidemiology of TBI in the United States, -- the consequences in terms of pathophysiology, impairments, functional limitations, disabilities, societal limitations, and economic impact, -- the mechanisms underlying functional recovery following TBI, -- the common therapeutic interventions for the cognitive and behavioral sequelae of TBI, and -- the models for comprehensive coordinated multi-disciplinary rehabilitation. Based on the answers to these questions, the conference tried to give recommendations regarding rehabilitation practices for people with TBI, and identified areas where further research is needed. Show more

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 103-108, 2002

Authors: Bullinger, M. | the TBI Consensus Group,

Article Type: Research Article

Abstract: Introduction: Traumatic brain injuries (TBI) are one of the most common consequences of traffic accidents. Patients with mild, moderate or severe brain injuries suffer from physical, cognitive, behavioral, emotional and social problems. Most of these problems have been a long standing focus amongst practitioners and researchers. Only recently a development has started that took interest in the quality of life outcome of TBI patients. The international members of this consensus meeting reviewed the literature on …Quality of Life assessment after TBI and discussed the applicability of different measurements to this specific patient group. Time Points: During the acute phase (T1; < 3 month after trauma) QoL it is difficult to assess due to the reduced conciousness of TBI patients. In the phase of rehabilitation (T2; < one year after trauma) and in the post-rehabilitation phase (T3) repeated assessment of QoL is recommended. Instruments: Several generic and disease-specific instruments possibly relevant to TBI patients or specifically developed for this group were assessed according to the existing evidence in the literature. Criteria for the evaluation of these intruments were: feasibility, specificity, validity, comprehensiveness, international availability, existence of norms, and psychometric quality. The cognitive impairment and the existential dimension were not sufficiently considered in most of the reviewed instruments. Group Consensus: The familiy's and relatives' view of the patient's QoL should not be used as a proxy but provides an additional source of information in the acute phase. At T2 and T3, assessment of the patient's quality of life should include a generic as well as a disease specific instrument. Among the generic instruments the SF-36, the EuroQol and the WHO-QoL should be considered. The literature about specific instruments for patients with TBI like the EBIC is scarce. Therefore, the group could hardly give an empiracally based recommendation. The need for further investigation on QoL instruments in TBI patients is strongly emphasized. Show more

Keywords: traumatic brain injury, quality of life, consensus conference

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 111-124, 2002

Authors: Bouillon, B. | Kreder, H.J. | the MI Consensus Group,

Article Type: Research Article

Abstract: Background: While the primary goal of trauma care continues to be the preservation of life, interest has begun to focus on disability and quality of life of those who survive. Numerous instruments have been developed to measure personal well-being, impairment, or subjective life-satisfaction. But there is no consensus regarding which instruments are most appropriate to use in multiply injured patients, and comparison of results are difficult. Objective: The objective of this multinational conference was to …arrive at a consensus regarding the measurement of quality of life in survivors of multiple trauma. Specifically we sought to identify the best time intervals for measurement and a minimum set of instruments. Method: The group reviewed instruments currently in use for quality of life measurement in multiply injured patients. A structured discussion covered the following topics: definition of the population, the concept of quality of life, the importance of different domains of quality of life at different time points, the type of measures and their validity, consistency, and practicability, the mode of administration, subject burden, and availability of population norms. Results: The group suggested three time points, after 3, 12 and 24 months, for the assessment of quality of life after multiple injury. The Glasgow Outcome Scale (GOS) was suggested as an overall global outcome measure including death and vegetative state. The EuroQol was proposed to permit economic analysis, and the SF-36 as a validated global quality of life measure. Conclusion: While most selected measures are psychometrically sound, many have had limited use in the setting of multiple injuries. Researchers and clinicians may use these suggestions as a source of information when developing a measurement strategy. Show more

Keywords: quality of life, multiple injuries, consensus conference

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 125-134, 2002

Authors: Wood-Dauphinée, S. | Exner, G. | the SCI Consensus Group,

Article Type: Research Article

Abstract: Introduction: Spinal cord injury (SCI) often causes severe disabilities. The degree of functional impairment strongly depends on the level and completeness of lesion (tetraplegic, paraplegic). But evaluation of outcomes also needs to consider the broader concept of health-related quality of the life (HRQL) for SCI patients. A multinational group of clinicians and researchers assessed this concept and revieved the available instruments for measurement of quality of life in this group of patients. Time points: Phase …I is in the acute clinic; phase II during rehabilitation; phase III after discharge home. Annual follow-up investigations should be maintained. The phase of initial care (phase 0) is important for prognosis and should, therefore, be part of the documentation. Instruments: Criteria used to evaluate current QoL measures: reliability, validity, responsiveness, availability of translations, application in SCI patients, existing population norms. Several specific instruments or subscales exist for the following domains: physical and psychological functioning, pain, and handicap. Well-known generic measures of HRQL also have been applied to SCI patients, and a disease-specific instrument has been developed (SCIQL-23). A variety of subjective quality of life measures were evaluated as well. Group consensus / guideline: Prior to discharge from rehabilitation, the group suggested the use of the Functional Independence Measure, the Hospital Anxiety and Depression Scale and a Visual Analogue Scale for pain. Following discharge from the acute clinic, the SF-36, the Craig Handicap Assessment and Reporting Technique, the Quality of Well-being Scale, or the Life Satisfaction questionnaire were proposed. However, the evidence supporting the use of these instruments is sparse. Show more

Keywords: quality of life, spinal cord injury, consensus conference

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 135-149, 2002

Authors: Ravens-Sieberer, Ulrike | Patrick, Peter D. | the CHI Consensus Group,

Article Type: Research Article

Abstract: An international Task Force was convened under the guidance of BMBF Conference so as to review the "State of the art" for measuring quality of life (QoL) in children who have suffered traumatic brain injury (TBI). After expert review of instruments and evaluation of two independent literature reviews this work group established "inclusion criteria" for the review of current tools that could contribute to the measurement of QoL in children with TBI. Six instruments were determined …to meet all or most of the criteria required to be used in current clinical practice and research for children with TBI. Show more

Keywords: children, quality of life, traumatic brain injury, consensus conference

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 151-159, 2002

Authors: Neugebauer, E. | Bouillon, B. | Bullinger, M. | Wood-Dauphinée, S.

Article Type: Research Article

Abstract: In October 1999, an international and interdisciplinary consensus conference was held about the assessment and application of quality of life (QoL) measures after multiple trauma. Four working groups represented the following patients: children with traumatic brain injury (TBI); adults with TBI, adults with multiple injuries (but without TBI), and adults with spinal cord injury. According to predefined questions, the groups tried to identify the relevant problems of the patients, at different time points after the …traumatic event. A review of the existing instruments for quality of life assessment and the evidence of their application in trauma patients in the scientific literature was performed by each group. Based on the results of these literature reviews it was concluded that there are not enough data to establish "evidence-based" guidelines for QoL assessments in these patients. Nevertheless, the groups comprised of experts clinicians and methodologists, agreed on the Glasgow Outcome Scale and the SF-36 as generic tools for QoL assessment across all trauma patients. It was further recommended to use these generic tools in combination with condition-specific instruments to better reflect the specific problems of the patients. Finally, the whole group suggested that it was not appropriate to view this conference as a "final report" about QoL assessment in trauma patients, but rather it should be seen as a starting point for increased efforts to initiate clinical research projects using QoL as an outcome, to develop better instruments, and to include QoL assessments into daily routines. Show more

Keywords: quality of life, consensus conference, multiple injuries, traumatic brain injury, spinal cord injury

Citation: Restorative Neurology and Neuroscience, vol. 20, no. 3-4, pp. 161-167, 2002