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

Susan D. Mathias*, Sue K. Gao, Kimberly L. Miller, David Cella, Claire Snyder, Ralph Turner, Albert Wu, James B. Bussel, James N. George, Robert McMillan, Diane Kholos Wysocki, Janet L. Nichol

*Corresponding author for this work

Research output: Contribution to journalArticle

54 Scopus citations

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.

Original languageEnglish (US)
Article number13
JournalHealth and Quality of Life Outcomes
Volume6
DOIs
StatePublished - Feb 8 2008

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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    Mathias, S. D., Gao, S. K., Miller, K. L., Cella, D., Snyder, C., Turner, R., Wu, A., Bussel, J. B., George, J. N., McMillan, R., Wysocki, D. K., & Nichol, J. L. (2008). Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: A conceptual model starting with the patient perspective. Health and Quality of Life Outcomes, 6, [13]. https://doi.org/10.1186/1477-7525-6-13