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

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

doi:10.1186/1477-7525-6-13

Cited by 82 publications

(103 citation statements)

References 51 publications

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“…However, some have consistent and statistically significant deficits on QoL measures, bleeding, and increased risk of death. 28,[124][125][126] For those who fail standard therapies and still require treatment, options are limited. In this situation, the risk of further therapy must be discussed with the patient and compared with the benefit of that therapy.…”

Section: Treatment Options For Adult Patients Failing First-and Seconmentioning

confidence: 99%

International consensus report on the investigation and management of primary immune thrombocytopenia

Provan¹,

Stasi

Newland³

et al. 2010

Blood

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1,789

1,923

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IntroductionPrimary immune thrombocytopenia (ITP) is an acquired immunemediated disorder characterized by isolated thrombocytopenia, defined as a peripheral blood platelet count less than 100 ϫ 10 9 /L, and the absence of any obvious initiating and/or underlying cause of the thrombocytopenia. 1 Until recently, the abbreviation ITP stood for idiopathic thrombocytopenic purpura, but current awareness relating to the immune-mediated nature of the disease, and the absence or minimal signs of bleeding in a large proportion of cases have led to a revision of the terminology. 1 Concepts surrounding the mechanisms of thrombocytopenia in ITP have shifted from the traditional view of increased platelet destruction mediated by autoantibodies to more complex mechanisms in which both impaired platelet production and T cell-mediated effects play a role. [2][3][4][5][6] Recent epidemiologic data suggest that the incidence in adults is approximately equal for the sexes except in the mid-adult years (30-60 years), when the disease is more prevalent in women. 7,8 ITP is classified by duration into newly diagnosed, persistent (3-12 months' duration) and chronic (Ն 12 months' duration). 1 Whereas ITP in adults typically has an insidious onset with no preceding viral or other illness and it normally follows a chronic course, 9 ITP in children is usually short-lived with at least two-thirds recovering spontaneously within 6 months. 10 Signs and symptoms vary widely. Many patients have either no symptoms or minimal bruising, whereas others experience serious bleeding, which may include gastrointestinal hemorrhage (GI), extensive skin and mucosal hemorrhage, or intracranial hemorrhage (ICH). The severity of thrombocytopenia correlates to some extent but not completely with the bleeding risk. 7,11 Additional factors (eg, age, lifestyle factors, uremia) affect the risk and should be evaluated before the appropriate management is determined.The investigation and management of ITP patients vary widely. The purpose of this consensus document is to comment on new data and provide recommendations relating to diagnosis and treatment. Final judgment regarding care of individual patients should, however, lie with the responsible health care professional and be based on careful investigation of individual circumstances. MethodsComposition of the panel. The panel included 22 members with recognized clinical and research expertise in ITP representing North America (United States, 7; Canada, 1), Europe (France, 1; Italy, 2; Spain, 1; Switzerland, 1; United Kingdom, 8), and Australia (1).Assessment of the literature. Articles were identified by a computer-assisted search of the literature published in English using the National Library of Medicine PubMed database. The For personal use only. on May 7, 2018. by guest www.bloodjournal.org From search criteria were: 'immune thrombocytopenic purpura', 'idiopathic thrombocytopenic purpura', 'ITP', and 'autoimmune thrombocytopenic purpura'. A subsequent search was performed using the corresponding MedLin...

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Section: Treatment Options For Adult Patients Failing First-and Seconmentioning

confidence: 99%

International consensus report on the investigation and management of primary immune thrombocytopenia

Provan¹,

Stasi

Newland³

et al. 2010

Blood

Self Cite

1,789

1,923

View full text Add to dashboard Cite

show abstract

“…Other causes for thrombocytopenia are comprehensively judged according to past medical history, a physical examination, a complete blood count, and an examination of a peripheral blood film (4)(5)(6). The etiology of ITP remains unclear, although a great deal has been understood about its immunology (7), and the physician experience in treating ITP is limited.…”

Section: Introductionmentioning

confidence: 99%

“…Some patients suffer from major bleeding that requires immediate attention (8), while others present few symptoms (7). Severe thrombocytopenia, potentially leading to massive bleeding, may be life-threatening and require emergency therapy.…”

Section: Introductionmentioning

confidence: 99%

Management of Adult Chronic Immune Thrombocytopenia in Japan: Patient and Hematologist Perspectives from a Multi-center Cross-sectional Questionnaire Survey

Tsukune

Komatsu

2016

Intern. Med.

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Objective The objective of this study was to explore the perspective of hematologists and their patients regarding the management of adult chronic immune thrombocytopenia (ITP). Methods This was a multi-center, questionnaire-based, cross-sectional study conducted between 2012 and 2013 throughout Japan. Patients Hematologists, members of the Japanese Society of Hematology in 171 institutions, and their patients were invited to participate in this study. The hematologists were mainly asked about their treatment strategies, while patients were asked about their opinion of the applied treatments, treatment effect, impact on their quality of life (QOL), and treatment satisfaction. Results Questionnaires from 204 hematologists and 213 patients were collected. One hundred sixty hematologists (78.4%) started treatment based on the patient's platelet count. Corticosteroids were considered to be the most effective treatment (44.1%). Forty-six percent of hematologists responded that treatment would be started after the platelet count fell below 20×10 9 /L with bleeding symptoms, compared to 62.9% for patients with no bleeding symptoms. A platelet count of 50×10 9 /L or lower was acceptable for 94.0% of hematologists and 66.8% of patients. Fatigue was most frequently experienced by patients (44.6%). Patients also experienced psychological symptoms (feeling of anxiety or depressive mood: 29.1%, labyrinthitis: 23.5%). While 70.6% of hematologists assumed that the patient QOL was impaired to a moderate to substantial degree, the QOL was impaired in 34.3% of patients. Conclusion A substantial gap which exists between hematologists and their patients highlights a need for better understanding of potential conflicts for establishing effective strategies for ITP management.

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“…Patients with ITP have an increased risk of bleeding ranging from minor to life-threatening events and a diminished healthrelated quality of life (HRQoL). [1][2] The treatment goal in chronic ITP is to increase and then maintain platelets in a safe range to prevent bleeding; in addition, improving HRQoL is an important goal for the majority of patients. American Society of Hematology guidelines suggest that platelet counts of 30 000-50 000/L in patients without other risk factors are required to preclude the most serious complications of ITP (intracerebral or major gastrointestinal hemorrhage) 3 and platelets Ն 50 000/L are considered "safe" even for the most invasive procedures.…”

Section: Introductionmentioning

confidence: 99%

Safety and efficacy of eltrombopag for treatment of chronic immune thrombocytopenia: results of the long-term, open-label EXTEND study

Saleh

Bussel

Cheng

et al. 2013

Blood

281

249

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

Cited by 82 publications

References 51 publications

International consensus report on the investigation and management of primary immune thrombocytopenia

International consensus report on the investigation and management of primary immune thrombocytopenia

Management of Adult Chronic Immune Thrombocytopenia in Japan: Patient and Hematologist Perspectives from a Multi-center Cross-sectional Questionnaire Survey

Safety and efficacy of eltrombopag for treatment of chronic immune thrombocytopenia: results of the long-term, open-label EXTEND study

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