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Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): Impact of ITP on health-related quality of life.
Cooper, Nichola; Kruse, Alexandra; Kruse, Caroline; Watson, Shirley; Morgan, Mervyn; Provan, Drew; Ghanima, Waleed; Arnold, Donald M; Tomiyama, Yoshiaki; Santoro, Cristina; Michel, Marc; Laborde, Serge; Lovrencic, Barbara; Hou, Ming; Bailey, Tom; Taylor-Stokes, Gavin; Haenig, Jens; Bussel, James B.
Afiliação
  • Cooper N; Department of Haematology, Hammersmith Hospital, Imperial College London, London, UK.
  • Kruse A; Platelet Disorder Support Association, Cleveland, Ohio, USA.
  • Kruse C; Platelet Disorder Support Association, Cleveland, Ohio, USA.
  • Watson S; Patient representative for the UK ITP Forum, Bolnhurst, UK.
  • Morgan M; ITP Support Association, Bolnhurst, UK.
  • Provan D; Academic Haematology Unit, Blizard Institute, Barts and The School of Medicine and Dentistry, London, UK.
  • Ghanima W; Department of Medicine, Østfold Hospital Trust, Kalnes, Norway.
  • Arnold DM; Department of Hematology, Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
  • Tomiyama Y; Department of Medicine, McMaster Centre for Transfusion Research, McMaster University, Hamilton, Ontario, Canada.
  • Santoro C; Department of Blood Transfusion, Osaka University Hospital, Osaka, Japan.
  • Michel M; Hematology, University Hospital Policlinico Umberto I, Rome, Italy.
  • Laborde S; Department of Internal Medicine, National Referral Center for Adult Immune Cytopenias, Henri Mondor University Hospital, Assistance Publique Hôpitaux de Paris, Université Paris-Est Créteil, Créteil, France.
  • Lovrencic B; O'Cyto, Saint Loubes, France.
  • Hou M; Italian Association of Immune Thrombocytopenic Purpura, Caprino Veronese, Italy.
  • Bailey T; Department of Hematology, Shandong University, Jinan, China.
  • Taylor-Stokes G; Bespoke Team, Adelphi Real World, Macclesfield, UK.
  • Haenig J; Bespoke Team, Adelphi Real World, Macclesfield, UK.
  • Bussel JB; Novartis Pharma AG, Basel, Switzerland.
Am J Hematol ; 96(2): 199-207, 2021 02 01.
Article em En | MEDLINE | ID: mdl-33107998
ABSTRACT
Immune thrombocytopenia (ITP) has a substantial, multifaceted impact on patients' health-related quality of life (HRQoL). Data describing which aspects of ITP physicians and patients perceive as having the greatest impact are limited. The ITP World Impact Survey (I-WISh) was a cross-sectional survey, including 1507 patients and 472 physicians, to establish the impact of ITP on HRQoL and productivity from patient and physician perspectives. Patients reported that ITP reduced their energy levels (85% of patients), capacity to exercise (77%), and limited their ability to perform daily tasks (75%). Eighty percent of physicians reported that ITP symptoms reduced patient HRQoL, with 66% reporting ITP-related fatigue substantially reduced patient HRQoL. Patients believed ITP had a substantial impact on emotional well-being (49%) and 63% worried their condition would worsen. Because of ITP, 49% of patients had already reduced, or seriously considered reducing their working hours, and 29% had considered terminating their employment. Thirty-six percent of patients employed at the time of the survey felt ITP decreased their work productivity, while 51% of patients with high/very high symptom burden reported that ITP affected their productivity. Note, I-WISh demonstrated substantive impact of ITP on patients' HRQoL both directly for patients and from the viewpoint of their physicians. Patients reported reduced energy levels, expressed fears their condition might worsen, and those who worked experienced reduced productivity. Physicians should be aware not only of platelet counts and bleeding but also the multi-dimensional impact of ITP on patients' lives as an integral component of disease management.
Assuntos

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Púrpura Trombocitopênica Idiopática / Hemorragia Tipo de estudo: Diagnostic_studies / Observational_studies / Prevalence_studies / Risk_factors_studies Limite: Female / Humans / Male Idioma: En Ano de publicação: 2021 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Púrpura Trombocitopênica Idiopática / Hemorragia Tipo de estudo: Diagnostic_studies / Observational_studies / Prevalence_studies / Risk_factors_studies Limite: Female / Humans / Male Idioma: En Ano de publicação: 2021 Tipo de documento: Article