title: Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspective.
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.
  
  
  CONCLUSIONS
  ITP affects various areas of HRQoL. This conceptual model will help inform the evaluation of therapeutic strategies for ITP.
authors.affiliation: Health Outcomes Solutions, P,O, Box 2343; Winter Park, Florida 32790, USA. smathias@healthoutcomessolutions.com
authors.forename: Susan D
authors.initials: SD
authors.lastname: Mathias
authors.forename: Sue K
authors.initials: SK
authors.lastname: Gao
authors.forename: Kimberly L
authors.initials: KL
authors.lastname: Miller
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.forename: Claire
authors.initials: C
authors.lastname: Snyder
authors.forename: Ralph
authors.initials: R
authors.lastname: Turner
authors.forename: Albert
authors.initials: A
authors.lastname: Wu
authors.forename: James B
authors.initials: JB
authors.lastname: Bussel
authors.forename: James N
authors.initials: JN
authors.lastname: George
authors.forename: Robert
authors.initials: R
authors.lastname: McMillan
authors.forename: Diane Kholos
authors.initials: DK
authors.lastname: Wysocki
authors.forename: Janet L
authors.initials: JL
authors.lastname: Nichol
mesh_terms: D000293:Adolescent; D000328:Adult; D002140:California; D002908:Chronic Disease; D005260:Female; D017144:Focus Groups; D006304:Health Status; D006784:Hospitals, Teaching; D006801:Humans; D007154:Immune System Diseases / Q000523:psychology; D008297:Male; D008962:Models, Theoretical; D009519:New York City; D009825:Oklahoma; D011594:Psychometrics / Q000379:methods; D011696:Purpura, Thrombocytopenic / Q000503:physiopathology / Q000523:psychology; D011788:Quality of Life; D015203:Reproducibility of Results; D012919:Social Behavior; D011795:Surveys and Questionnaires