Quality of life in patients with spinal cord injury-basic issues, assessment, and recommendations

Issue title: Quality of life after multiple trauma

Article type: Research Article

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

Affiliations: School of Physical and Occupational Therapy, McGill University, 3654 Drummond St., Montreal, Quebec, Canada H3G 1Y5 | Spinal Cord Injury Center, BG Trauma Hospital, Hamburg, Germany

Note: [] Corresponding author. Tel.: +1 514 398 5326; Fax: +1 541 398 8193; E-mail: [email protected]

Note: [] Members of the SCI Consensus Group: S. Bostanci (Cologne, Germany), G. Exner (Hamburg, Germany) Chairman, C. Glass (Southport, UK), K.-A. Jochheim (Gologne, Germany), P. Kluger (Ulm, Germany), M. Koller (Marburg, Germany), K.R. Krishnan (Southport, UK), M.W.M. Post (Hoensbroek, The Netherlands), K.T. Ragnarsson (New York, USA), T. Rommel (Cologne, Germany), S. Wood-Dauphinee (Montreal, Canada) Chairman, G. Zitnay (Charlottsville, USA). We are saddened to report that during the compilation of this manuscript Mr. K.R. Krishnan, our colleague and friend, died suddenly on 28th December, 1999. His death was unexpected and has been a great loss to his family and friends alike. Krishnan had spent the past 30 years working with, and for, those with spinal cord injury and was an internationally respected clinician, researcher and advocate in the field. We dedicate this article to him in recognition of our respect and admiration for all his efforts and achievements.

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.

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

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