title: Quality of life in patients with spinal cord injury--basic issues, assessment, and recommendations.
abstract: BACKGROUND
  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 reviewed the available instruments for measurement of quality of life in this group of patients.
  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.
  
  
  METHODS
  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.
  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.
authors.affiliation: School of Physical and Occupational Therapy, McGill University, 3654 Drummond St., Montreal, Quebec, Canada H3G 1Y5. sharon.wood.dauphine@mcgill.ca
authors.forename: S
authors.initials: S
authors.lastname: Wood-Dauphinée
authors.forename: G
authors.initials: G
authors.lastname: Exner
authors.forename: B
authors.initials: B
authors.lastname: Bostanci
authors.forename: G
authors.initials: G
authors.lastname: Exner
authors.forename: C
authors.initials: C
authors.lastname: Glass
authors.forename: K-A
authors.initials: KA
authors.lastname: Jochheim
authors.forename: P
authors.initials: P
authors.lastname: Kluger
authors.forename: M
authors.initials: M
authors.lastname: Koller
authors.forename: K R
authors.initials: KR
authors.lastname: Krishnan
authors.forename: M W M
authors.initials: MW
authors.lastname: Post
authors.forename: K T
authors.initials: KT
authors.lastname: Ragnarsson
authors.forename: T
authors.initials: T
authors.lastname: Rommel
authors.forename: G
authors.initials: G
authors.lastname: Zitnay
mesh_terms: D004185:Disability Evaluation; D006233:Persons with Disabilities; D005500:Follow-Up Studies; D005858:Germany / Q000453:epidemiology; D006287:Health Planning Guidelines; D006304:Health Status; D006305:Health Status Indicators; D006801:Humans; D017063:Outcome Assessment, Health Care; D010147:Pain Measurement; D010549:Personal Satisfaction; D011594:Psychometrics; D011788:Quality of Life; D018434:Sickness Impact Profile; D013119:Spinal Cord Injuries / Q000145:classification / Q000523:psychology / Q000534:rehabilitation; D011795:Surveys and Questionnaires