Patterns of reporting health-related quality of life across racial and ethnic groups

Abstract

The National Institute of Health and the US FDA have regulations on the inclusion of minorities in research, and guidelines on how to conduct and report subgroup analyses among each racial and ethnic group. Although health-related quality of life (HRQL) has enjoyed increased popularity as an important end point in clinical research, the literature lacks a comprehensive review on whether or not racial and ethnic groups report HRQL differently, particularly among patients with specific disease states. HRQL is different from most other end points in clinical research in that it is reported by patients and thus is affected by patients’ racial and ethnic background in a special way. This paper summarizes the existing literature on patterns of reporting HRQL across racial and ethnic groups. It begins with a summary of general HRQL patterns and subsequently covers HRQL related to renal disease, breast cancer and prostate cancer. This paper is not intended to be exhaustive, but to inform researchers of good practice in clinical research utilizing HRQL as study end points.

Keywords::

• ethnic groups
• health-related quality of life
• patient-reported health outcomes
• racial groups

Acknowledgements

The authors would like to acknowledge the comments from anonymous reviewers and Dr Teresa Waters, and research assistance from Lawrence T Brown, Robert A Haygood, Meghan A Hufstader, Anndrea Mitchell and Salvador Sias.