Health-related quality-of-life assessments in diverse population groups in the United States

Med Care. 2000 Sep;38(9 Suppl):II102-24.

Abstract

Background: Effectiveness research needs to represent the increasing diversity of the United States. Health-related quality-of-life (HRQOL) measures are often included as secondary treatment outcomes. Because most HRQOL measures were developed in nonminority, well-educated samples, we must determine whether such measures are conceptually and psychometrically equivalent in diverse subgroups. Without equivalence, overall findings and observed group differences may contain measurement bias.

Objectives: The objectives of this work were to discuss the nature of diversity, importance of ensuring the adequacy of HRQOL measures in diverse groups, methods for assessing comparability of HRQOL measures across groups, and methodological and analytical challenges.

Results: Integration of qualitative and quantitative methods is needed to achieve measurement adequacy in diverse groups. Little research explores conceptual equivalence across US subgroups; of the few studies of psychometric comparability, findings are inconsistent. Evidence is needed regarding whether current measures are comparable or need modifications to meet universality assumptions, and we need to determine the best methods for evaluating this. We recommend coordinated efforts to develop guidelines for assessing measurement adequacy across diverse subgroups, allocate resources for measurement studies in diverse populations, improve reporting of and access to measurement results by subgroups, and develop strategies for optimizing the universality of HRQOL measures and resolving inadequacies.

Conclusions: We advocate culturally sensitive research that involves cultural subgroups throughout the research process. Because examining the cultural equivalence of HRQOL measures within the United States is somewhat new, we have a unique opportunity to shape the direction of this work through development and dissemination of appropriate methods.

Publication types

  • Review

MeSH terms

  • Awareness
  • Cross-Cultural Comparison
  • Cultural Diversity*
  • Ethnic Groups
  • Health Status Indicators*
  • Humans
  • Outcome Assessment, Health Care / methods
  • Psychometrics
  • Quality of Life*
  • Research Design*
  • Self-Assessment
  • Surveys and Questionnaires
  • Treatment Outcome
  • United States / epidemiology