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.Key words: affect, health status, outcome assessment (health care), personal satisfaction, quality-adjusted life years, quality of life, reproducibility of results, review, spinal cord injuries, utility. may do so during a period of depression and despair that is not uncommon after SCI [4]. The suicide rate among Abbreviations: ABS = affect balance scale; ASIA ^ American Spinal Injury Association; CHART ^ Craig Handicap Assessment and Reporting Technique; Ci = confidence interval; DALY -disability-adjusted life year; EQ-5D -EuroQoL (5 dimensions); HRQoL = health-related quality of life; HUB Ĥ ealth Utilities Index, version 3; ICF = Intemational Classification of Functioning. Disability and Health; LSI-A ^ Life Satisfaction Index, version A; MCS = Mental Component Summary (of SF-36); NHP -Nottingham Health Profile; PCS -Physical Component Summary (of SF-36); PQVS = Profil de la Qualite de Vie subjective; QALY ^ qualityadjusted life year; QoL = quality of life; QoLI = (Frisch's) Quality of Life inventory; QoLS = (Flanagan's) Quality-of-Lifc scale; QWB = Quality of Well-Being Scale; SCI = spinal cord injury; SD = standard deviation; SF-6D = SF-36-derived, six-dimension utility measure; SF-12 = Short-Form 12 questions; SF-36 = Short-Form 36 questions; SIP = Sickness Impact Profile; SWB = subjective well-being; SWLS = Satisfaction With Life Scale; WHO -World Health Organization.
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.
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