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. 2021 Feb 1;96(2):199-207.
doi: 10.1002/ajh.26036. Epub 2020 Dec 19.

Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): Impact of ITP on health-related quality of life

Nichola Cooper  1 , Alexandra Kruse  2 , Caroline Kruse  2 , Shirley Watson  3 , Mervyn Morgan  4 , Drew Provan  5 , Waleed Ghanima  6   7 , Donald M Arnold  8 , Yoshiaki Tomiyama  9 , Cristina Santoro  10 , Marc Michel  11 , Serge Laborde  12 , Barbara Lovrencic  13 , Ming Hou  14 , Tom Bailey  15 , Gavin Taylor-Stokes  15 , Jens Haenig  16 , James B Bussel  17
Affiliations

Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): Impact of ITP on health-related quality of life

Nichola Cooper et al. Am J Hematol. .

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.

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Conflict of interest statement

N.C. reports honoraria for speaking engagements and advisory boards from Amgen and Novartis. C.K. received honoraria for speaking engagements and consultancy fees paid to PDSA from Amgen, Novartis, and Rigel Pharmaceuticals. S.W. reports advisory work for Novartis. M.M. reports advisory work for Novartis, Sobi and UCB. D.P. received research grants and honoraria from Novartis and Amgen and consultancy for UCB, MedImmune, and ONO Pharmaceutical. W.G. received research grants from Bayer, BMS, and Novartis and honoraria for participation in advisory boards for Amgen and Novartis. D.M.A. received research grants from Novartis, Amgen, and Bristol‐Myers Squibb and worked as a consultant for Amgen, Novartis, Rigel, and Principia. Y.T. reports honoraria and membership of advisory committees for Novartis and honoraria from Chugai and Kyowa‐Kirin. C.S. reports participating in speakers' bureaus for Amgen, advisory boards for Grifols and Gilead, and speakers' bureaus and advisory boards for Shire/Takeda, Novo Nordisk, Bayer, Pfizer, CSL, Roche, Novartis, and Sobi. M.M. reports membership of advisory boards and speaker engagements for Amgen and Novartis. B.L. reports honoraria for consultancy fee paid to Aipit (Italian Association of Immune Thrombocytopenic Purpura) from UCB and Novartis. J.B.B. reports honoraria, membership of a Board of Directors or advisory board, and research funding for Amgen, Novartis, and GSK, research funding from Boehringer Ingelheim, Prophylix Pharma, Protalex, and Rigel Pharmaceuticals, membership of a Board of Directors or advisory board for Momenta Pharmaceuticals, Prophylix Pharma, Protalex, and Rigel Pharmaceuticals, patents and royalties from UptoDate, and participating in a speakers' bureau for Physician Education Resource. J.H. is a full‐time employee of Novartis Pharma AG. T.B. and G.T.‐S. are employees of Adelphi Real World, which has received consultancy fees from Novartis. A.K., S.L., and M.H. have nothing to disclose.

Figures

FIGURE 1
FIGURE 1
A, Proportion of patients reporting an impact of ITP on daily living (ILQI). ITP, immune thrombocytopenia. n = number of respondents. Note: The remaining respondents all replied “never”. B, Patient‐perceived factors driving a psychological/emotional impact in ITP. ITP, immune thrombocytopenia. N = 1507 for all questions. There were “not stated” responses for two questions: “It is important to me that I have a stable and safe platelet count” (n = 2) and “I worry that my platelet count goes up and down for no apparent reason” (n = 1). Note: % values refer to the proportion of patients scoring 5‐7 on a 7‐point Likert scale indicating the greatest psychological/emotional impact [Color figure can be viewed at wileyonlinelibrary.com]
FIGURE 2
FIGURE 2
A, Effect of ITP on employment status. B, Effect of ITP on employment status by symptom burden. ITP, immune thrombocytopenia. C, Effect of ITP on regular activities. D, Effect of ITP on regular activities by age. ITP, immune thrombocytopenia [Color figure can be viewed at wileyonlinelibrary.com]
FIGURE 3
FIGURE 3
Top three treatment goals identified by A, patients and B, physicians. Most frequently selected treatment goals (patients and physicians were asked to select and rank their top three treatment goals) [Color figure can be viewed at wileyonlinelibrary.com]
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