Meten kwaliteit van leven na ruggemergletsel; verschillende aanbevelingen

Wood-Dauphinee S, Exner G, Bostanci B, Exner G, Glass C, Jochheim KA, et al. Quality of life in patients with spinal cord injury--basic issues, assessment, and recommendations. Restor Neurol Neurosci 2002;20(3-4):135-49.

INLEIDING: ruggenmergletsel veroorzaakt vaak een ernstige handicap. De mate van functionele beperkingen is bijzonder sterk afhankelijk van het niveau en de volledigheid van de laesie (tetraplegic, paraplegic). Maar de evaluatie van uitkomsten moet ook het bredere concept van de aan gezondheid gerelateerde kwaliteit van het leven voor patiënten met ruggenmergletsel meenemen. Een multinationale groep van clinici en onderzoekers beoordeeld dit concept en herziet de beschikbare instrumenten voor het meten van kwaliteit van leven in deze groep van patiënten

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 reviewed 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

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