Research

Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspective

Susan D Mathias¹ , Sue K Gao² , Kimberly L Miller³ , David Cella⁴ , Claire Snyder⁵ , Ralph Turner⁶ , Albert Wu⁵ , James B Bussel⁷ , James N George⁸ , Robert McMillan⁹ , Diane Kholos Wysocki¹⁰ and Janet L Nichol²

¹  Health Outcomes Solutions, P.O. Box 2343; Winter Park, Florida 32790, USA

²  Amgen, Inc., One Amgen Center Drive; Thousand Oaks, CA 91320-1799, USA

³  ICON Clinical Research, Lifecycle Sciences Group, 188 Embarcadero, Suite 200; San Francisco, CA 94105, USA

⁴  Evanston Northwestern Healthcare and Northwestern University Medical School, 1001 University Place, Suite 100; Evanston IL 60201, USA

⁵  John Hopkins University, 624 North Broadway; Baltimore, MD 21205, USA

⁶  Phase V Technologies, Inc., 20 Walnut Street; Wellesley Hills, MA 02481, USA

⁷  New York Presbyterian Hospital/Weill Cornell Medical Center, 525 East 68th Street; New York, NY 10021, USA

⁸  University of Oklahoma Health Sciences Center, P.O. Box 26901; Oklahoma City, OK 73190, USA

⁹  The Scripps Research Institute, 10550 N Torrey Pines Road; La Jolla, CA 92037, USA

¹⁰  University of Nebraska at Kearney, Copeland Hall 120B; Kearney, NE 68849, USA

author email corresponding author email

Health and Quality of Life Outcomes 2008, 6:13doi:10.1186/1477-7525-6-13

Published:	8 February 2008

Abstract

Background

Immune thrombocytopenic purpura (ITP), a condition characterized by autoimmune-mediated platelet destruction and suboptimal platelet production, is associated with symptoms such as bruising, epistaxis, menorrhagia, mucosal bleeding from the gastrointestinal and urinary tracts and, rarely central nervous system bleeding. The aim of this research is to develop a conceptual model to describe the impact of ITP and its treatment on patients' health-related quality of life (HRQoL).

Methods

A literature search and focus groups with adult ITP patients were conducted to identify areas of HRQoL affected by ITP. Published literature was reviewed to identify key HRQoL issues and existing questionnaires used to assess HRQoL. Focus group transcripts were reviewed, and common themes were extracted by grouping conceptual categories that described the impact on HRQoL.

Results

The literature synthesis and themes from the focus group data suggest that decreased platelet counts, disease symptoms, and treatment side effects influence multiple domains of HRQoL for ITP patients. Key areas affected by ITP and its treatments include emotional and functional health, work life, social and leisure activities, and reproductive health.

Conclusion

ITP affects various areas of HRQoL. This conceptual model will help inform the evaluation of therapeutic strategies for ITP.