Marcel P. Dijkers

Quality of life of individuals with spinal cord injury: A review of conceptualization, measurement, and research findings

Quality of life (QoL) is increasingly becoming a key concept in research and clinical services. However, no agreement exists on what QoL is and how it is to be measured. This paper reviews three different yet linked approaches to QoL conceptualization: QoL as subjective well-being; QoL as achievement; and QoL as utility. People with spinal cord injury (SCI) tend to report fewer feelings of well-being, on average, than nondisabled persons; score lower on physical, mental, and social health and in other domains of life that people consider important to life quality; and have a health state that is preferred much less than that of the average person. Many QoL instruments used in SCI research have not been validated for this group, or have questionable assumptions, and clinical applications of QoL measures still have many problems. Much SCI QoL research tends to be atheoretical.

Participation Objective, Participation Subjective: A Measure of Participation Combining Outsider and Insider Perspectives

BackgroundParticipation now replaces community integration or handicap as concepts reflecting the social and interpersonal aspects of disability. If rehabilitation is to adequately measure participation, new measures of participation are needed. To represent the voice of the consumer, such measures should reflect not just “objective,” normative aspects, but also subjective ones, tapping the consumers view of participation. ObjectivesTo describe the development of and preliminary metrological information on a new measure of participation, Participation Objective, Participation Subjective (POPS). MethodsA total of 454 community-living individuals with traumatic brain injury (TBI) completed the POPS, as well as measures of quality of life (Life 3), depressive mood (BDI), and TBI symptoms (BISQ). The POPS requires reporting of the share of household activities performed, or the frequency or hours of nonhousehold activities. For each, the subject indicates whether he or she wants to perform more, the same, or less of the activity, and the importance of the activity to well-being. Five subscales and a total scale are calculated, for an objective component (PO), and a subjective component (PS) that reflects importance-weighted satisfaction with activity level. ResultsIndividuals with mild TBI scored minimally higher than those with moderate-severe TBI on PO subscores, but desired more change on the PS. Test-retest reliability for the PO and the PS and the subscales was from weak (intraclass correlation coefficient 0.28) to adequate (0.89), with PS components having better reliability. The PS component scores had the expected correlations with TBI symptoms, depressed mood, and life satisfaction, among both those with mild injury and those with moderate-severe injury. Injury severity and time since onset were not related to PO or PS scores. ConclusionsThe POPS shows promise as a measure of participation. It fills a void in that it reflects both insider and outsider perspectives on participation after TBI.

Issues in the Conceptualization and Measurement of Participation: An Overview

While participation is increasingly defined as the key outcome of rehabilitation, disagreements on and shortcomings in the definition, operationalization, and measurement of this concept abound and interfere with the progress of clinical services and research. This article explores a number of the major issues related to the quantification of participation and makes suggestions for new directions, using the following orienting questions: What is the definition of participation? Where is the border between Participation and Activity? Is there more to participation than performance? What domains should be included in a participation measure? What are the appropriate metrics in quantifying participation? How do we define adequate participation? How should participation be operationalized? What is the proper measurement model for participation instruments? How should we collect data on participation? How do we evaluate the quality of a participation instrument?

Measuring quality of life: methodological issues.

Quality of life is a term used in a number of disciplines, and definitions and conceptualizations vary from utility of health states to life satisfaction and from possession of socially desirable characteristics to positive affect. This article offers a taxonomy of measures of quality of life based on measurement characteristics, which are shown to closely parallel definitions and their underlying assumptions. The fact that basic philosophical issues and ethical assumptions underlie quality of life measurement is stressed. Clinimetric characteristics of quality of life measures (validity, reliability, responsiveness, sensitivity, practicality, face validity, interpretability) are reviewed. This article concludes with a discussion of a number of additional methodological issues, including the following: measurement of change in the quality of life; generic v disease-specific measures; the use of self-reports by persons with mental health or cognitive-communicative problems; and the use of proxy reporters of quality of life.

The Craig Handicap Assessment and Reporting Technique (CHART): Metric Properties and Scoring

The purpose of this study was to facilitate the proper use and interpretation of the Craig Handicap Assessment and Reporting Technique (CHART) as a measure of community integration and social participation in individuals with spinal cord injury (SCI). CHART data on 1,998 cases in the SCI Model Systems database were analyzed. These cases provide the basis for norms by neurologic categories on a large sample. The relationship of CHART subscale scores with demographic factors (age, gender, race/ethnicity, occupation, year post injury, marital status, and education) and level and completeness of SCI are described. Maximum scores achieved for the subscales are presented by time post injury. Sample biases are demonstrated with substantial missing data in the Economic Self Sufficiency subscale. The CHART total score is shown to be a potentially misleading summary assessment of handicap, and use of subscale scores is recommended. The discussion addresses these issues and others relevant to characteristics and pra...

Pain after spinal cord injury: an evidence-based review for clinical practice and research. Report of the National Institute on Disability and Rehabilitation Research Spinal Cord Injury Measures meeting.

Abstract Background/Objectives: To examine the reliability, validity, sensitivity, and practicality of various outcome measures for pain after spinal cord injury (SCI), and to provide recommendations for specific measures for use in clinical trials. Data Sources: Relevant articles were obtained through a search of MEDLINE, EMBASE, CINAHL, and PubMed databases from inception through 2006. Study Selection: The authors performed literature searches to find articles containing data relevant to the reliability and validity of each pain outcome measure in SCI and selected non-SCI populations. Data Extraction: After reviewing the articles, an investigator extracted information utilizing a standard template. A second investigator reviewed the chosen articles and the extracted pertinent information to confirm the findings of the first investigator. Data Synthesis: Taking into consideration both the quantity and quality of the studies analyzed, judgments on reliability and validity of the measures were made by the two investigators. Based upon these judgments, recommendations were formulated for use of specific measures in future clinical trials. In addition, for a subset of measures a voting process by a larger group of SCI experts allowed formulation of recommendations including determining which measures should be incorporated into a minimal dataset of measures for clinical trials and which ones need revision and further validity and reliability testing before use. Conclusions: A 0-10 Point Numerical Rating Scale (NRS) is recommended as the outcome measure for pain intensity after SCI, while the 7-Point Guy/Farrar Patient Global Impression of Change (PGIC) scale is recommended as the outcome measure for global improvement in pain. The SF-36 single pain interference question and the Multidimensional Pain Inventory (MPI) or Brief Pain Inventory (BPI) pain interference items are recommended as the outcome measures for pain interference after SCI. Brush or cotton wool and at least one high-threshold von Frey filament are recommended to test mechanical allodynia/hyperalgesia while a Peltier-type thermotester is recommended to test thermal allodynia/hyperalgesia. The International Association for the Study of Pain (IASP) or Bryce-Ragnarsson pain taxonomies are recommended for classification of pain after SCI, while the Neuropathic Pain Scale (NPS) is recommended for measuring change in neuropathic pain and the Leeds Assessment of Neuropathic Symptoms and Signs (LANSS) for quantitating neuropathic and nociceptive pain discrimination.

International Spinal Cord Injury Pain Classification: part I. Background and description

Study design:Discussion of issues and development of consensus.Objective:Present the background, purpose, development process, format and definitions of the International Spinal Cord Injury Pain (ISCIP) Classification.Methods:An international group of spinal cord injury (SCI) and pain experts deliberated over 2 days, and then via e-mail communication developed a consensus classification of pain after SCI. The classification was reviewed by members of several professional organizations and their feedback was incorporated. The classification then underwent validation by an international group of clinicians with minimal exposure to the classification, using case study vignettes. Based upon the results of this study, further revisions were made to the ISCIP Classification.Results:An overall structure and terminology has been developed and partially validated as a merger of and improvement on previously published SCI pain classifications, combined with basic definitions proposed by the International Association for the Study of Pain and pain characteristics described in published empiric studies of pain. The classification is designed to be comprehensive and to include pains that are directly related to the SCI pathology as well as pains that are common after SCI but are not necessarily mechanistically related to the SCI itself.Conclusions:The format and definitions presented should help experienced and non-experienced clinicians as well as clinical researchers classify pain after SCI.

Measuring the Long-Term Outcomes of Traumatic Brain Injury: A Review of the Community Integration Questionnaire

The Community Integration Questionnaire (CIQ) was developed as a measure of reassumption of roles, responsibilities, and relationships by persons with traumatic brain injury (TBI). In this article, data from a number of studies relevant to the CIQs psychometric qualities (reliability, sensitivity, validity, and subscore and total score distributions) are summarized, and its scope, content validity, metric, norms, and age and gender effects on scores are discussed. Recommendations are made for the use of the CIQ, and for research needed to improve the utility of the current measure as well as to develop a better one.

A tale of two countries: environmental impacts on social participation after spinal cord injury

Study design: Comparative analysis of survey data produced in two countries.Objectives: To assess the degree to which environmental barriers impact social participation, and to identify the aspects of participation most affected.Setting: Community-dwelling individuals with spinal cord injury in the USA and Turkey.Methods: Subjects completed the Functional Independence Measure (FIM) motor score, the Craig Hospital Inventory of Environmental Factors (CHIEF), and the Craig Handicap Assessment and Reporting Technique (CHART). Analysis of co-variance was used to analyze CHIEF and CHART differences within and between country.Results: US subjects reported higher participation scores (CHART) and lower barriers (CHIEF), however, when controls for age, gender, time since injury and motor ability (FIM) were applied, country differences in reports of barriers were limited. Motor ability was the major predictor of participation, which was minimally affected by barriers.Conclusion: Conceptualization and measurement issues may have been the reason for the minimal support for the hypothesis that environment affects participation. Suggestions for future research are made.Sponsorship: National Institute on Disability and Rehabilitation Research, Centers for Disease Control and Prevention.

Objective measurement of fatigue following traumatic brain injury.

ObjectivesTo quantify posttraumatic brain injury (post-TBI) mental fatigue objectively by documenting changes in performance on neuropsychological tests as a result of sustained mental effort and to examine the relationship between objectively measured mental fatigue and self-reported situational and day-to-day fatigue. ParticipantsThe study included 202 community-dwelling individuals with mild-severe TBI and 73 noninjured controls. MeasuresMeasures included Cambridge Neuropsychological Test Automated Battery, Global Fatigue Index, and situational fatigue rating. MethodSubjects were administered a 30-minute computerized neuropsychological test battery 3 times. The second and third administrations of the battery were separated by approximately 2 hours of interviews and administration of self-report measures. ResultsThe neuropsychological test scores were factor analyzed, yielding 3 subscales: speed, accuracy, and executive function. Situational fatigue and day-to-day fatigue were significantly higher in individual with TBI group than in individuals without TBI and were associated with speed subscale scores. Individuals with TBI evidenced a significant decline in performance on the accuracy subscale score. These declines in performance related to sustained mental effort were not associated with subjective fatigue in the TBI group. While practice effects on the speed and accuracy scores were observed in non–brain-injured individuals, they were not evidenced in individuals with TBI. ConclusionsFindings were largely consistent with previous literature and indicated that while subjective fatigue is associated with poor performance in individuals with TBI, it is not associated with objective decline in performance of mental tasks.