Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspective
Year: 2008
Type: article
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.
Authors: 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 Wysocki, Janet L Nichol
Institutions: Health Outcomes Solutions (United States), Amgen (United States), Northwestern University, Johns Hopkins University, NewYork–Presbyterian Hospital, Weill Cornell Medical Center, University of Oklahoma Health Sciences Center, Scripps Research Institute, University of Nebraska at Kearney
Language: English
Subfield: Hematology
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,190
Funder: Amgen
OpenAlex ID: W2136971471
