Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspective.
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.
Mathias
Susan D
SD
Health Outcomes Solutions, P,O, Box 2343; Winter Park, Florida 32790, USA. smathias@healthoutcomessolutions.com
Gao
Sue K
SK
Miller
Kimberly L
KL
Cella
David
D
Snyder
Claire
C
Turner
Ralph
R
Wu
Albert
A
Bussel
James B
JB
George
James N
JN
McMillan
Robert
R
Wysocki
Diane Kholos
DK
Nichol
Janet L
JL
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