General health status measures for people with cognitive impairment: learning disability and acquired brain injury

Riemsma R P, Forbes C A, Glanville J M, Eastwood A J, Kleijnen J
Record ID 32001000050
Authors' objectives:

- To identify the general health status measures that have been validated in patients with cognitive impairment. - To assess the extent to which these measures have been validated. - To draw out the implications of the findings for the use of existing measures and for future primary research in this area.

Authors' results and conclusions: The review includes data from 71 studies, reported in 83 separate publications. In total 34 different general health status measures were described in the 83 publications, with the Sickness Impact Profile (SIP) and the Short Form-36 (SF-36) the most frequently used measures (20 and 19 studies, respectively). These studies included a total of 98 instrument validations, 52 of which definitely or probably included people with cognitive impairment. Six measures were extensively validated (quality scores ranged from 0.25 to 0.5, on a scale from 0 to 1) in studies in which more than 50% of the respondents were people with cognitive impairment. A further three measures were also validated in studies in which more than 50% of the respondents were people with cognitive impairment, but their level of validation was more limited (quality scores ranged from 0.1 to 0.2). Five measures were validated in studies in which 2050% of the respondents were cognitively impaired, which may limit their relevance to participants with cognitive impairment (quality scores ranged from 0.1 to 0.6). The SF-36 was also validated in two studies in which 2050% of the respondents were cognitively impaired and the quality score was 0.3. Finally, nine of the measures were only validated in studies in which less than 20% of the respondents were cognitively impaired. For these measures it was unclear whether the findings applied to people with cognitive impairment.
Authors' recommendations: Very few measures have been validated specifically for cognitively impaired respondents. Studies where at least 50% of the respondents were cognitively impaired generally showed poorer validity results compared with studies with fewer cognitively impaired persons, indicating that general health status measures designed for the general population are not automatically suitable for people with cognitive impairment. The few measures that were specifically developed for people with cognitive impairment also reported poor validity results. Therefore, there are no validated instruments available for use in cognitively impaired respondents; existing measures, specifically designed for use in these populations, should be used with caution. The most promising measure is the MS-Quality of Life Interview (MS-QLI) for MS patients. The MS-QLI was thoroughly validated in 300 MS patients and the results were good, except for the social function subscale. However, only 2050% of the respondents in this study had cognitive impairment. Most information on the validity of general health status measures was found in studies among people with LD. For these patients, six measures were found that have been validated in a populations where more than 50% of the respondents were cognitively impaired LD patients.
Authors' methods: Systematic review
Project Status: Completed
URL for project:
Year Published: 2001
English language abstract: An English language summary is available
Publication Type: Not Assigned
Country: England, United Kingdom
MeSH Terms
  • Brain Injuries
  • Cognition Disorders
  • Health Status Indicators
  • Learning Disabilities
Organisation Name: NIHR Health Technology Assessment programme
Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK
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Copyright: 2009 Queen's Printer and Controller of HMSO
This is a bibliographic record of a published health technology assessment from a member of INAHTA or other HTA producer. No evaluation of the quality of this assessment has been made for the HTA database.