Symptoms are not measured by platelet count
Immune thrombocytopenia (ITP) is a rare platelet disorder characterised by increased bleeding, bruising and fatigue.1 However, the ITP disease burden can have a toll on both the physical and emotional well-being of patients. This impact can often be underestimated²
The ITP World Impact Survey (I-WISh), conducted in 13 countries, was led by ITP experts and patient support groups with the aim of understanding the real-world impact of ITP from the perspective of patients (n=1507) and physicians (n=472)³*
The impact of ITP in the UK²
Alongside the global insights, a sub-population analysis of the I-WISh study shed light on the burden experienced by ITP patients in the UK (n=120/1507)
Physicians often overestimate common signs of ITP, and underestimate the symptoms experienced by patients.
Patient vs. physician reported signs and symptoms at diagnosis²
Approximately half (49% n=57/120) of the patients who took part in the survey reported feeling that their treating physician did not understand the impact ITP had on their life'.⁴
The physical impact of ITP²
It is understood that ITP patients suffer from fatigue. However, ITP can impact patients widely with other signs and symptoms which are recognised less often. Some of these can have a large impact on the quality of life (QoL) of patients and yet be underrated by physicians:²
Social stigma of ITP
“My bruising bothers me especially in the summertime when I can’t [go swimming] because I’m always bruising and people look at you funny”⁵
Purpura and petechiae are signs of ITP that patients often report as severe [60% (n=~54/90) and 51% (n=~35/69), respectively].2 Worrying about their physical appearance, patients can feel the need to wear certain clothing to hide their disease, which can have a severe emotional burden on some patients⁶
The emotional burden of ITP
“When you’re in a flare you just feel off in a corner by yourself and you’re isolated from everyone”⁵
ITP can have an emotional impact on patients. In the I-WISh study patients reported stress (24%, n=~29/119), depression (18%, n=~22/120) and anxiety (8%; n=~10/120).2,6 Concerningly, more than 1 in 10 patients worried about dying due to their disease⁶
It is important to note more than half (60%; n=~740/1233) of patients who took part in the I-WISh study wanted additional support due to the impact of ITP on their mental health⁷
Are you asking your patients how ITP makes them feel?
ITP, immune thrombocytopenia; I-WISh, ITP World Impact Survey; QoL, quality of life.
*ITP patients and haematolgogists (or haemto-oncologists) treating ITP from the following 13 countries were invited to participate: Canada, China, Colombia, Egypt, France, Germany, India, Italy, Japan, Spain, Turkey, UK, and US.³
References:
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Immune thrombocytopenia (ITP) (2014). [PDF] Guy’s and St Thomas’ NHS Foundation Trust. Available at: https://www.guysandstthomas.nhs.uk/resources/patient-information/haematology/Immunethrombocytopenia-web-friendly.pdf. Date accessed:December 2021.
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Cooper N, et al. Symptom burden in Immune Thrombocytopenia (ITP): Findings reported by UK patients and physicians from the ITP World Impact Survey (I-WISh). Poster presented at the Annual Scientific Meeting of the British Society for Haematology 2020; November 9–14 : Virtual Event. BSH2020-697.
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Cooper N, et al. Am J Hematol. 2021;96:188–198.
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Cooper N, et al. Patients' and Physicians' Perceptions of Treatments and Goal Setting in Immune Thrombocytopenia (ITP): Findings reported by UK patients and physicians from the ITP World Impact Survey (I-WISh). Poster presented at the Annual Scientific Meeting of the British Society for Haematology 2020; November 09–14: Virtual Event. BSH2020-688.
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Mathias S, et al. Health Qual Life Outcomes. 2008;6:13.
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Cooper N, et al. Burden of Disease in Immune Thrombocytopenia (ITP): The results for UK patients from the ITP World Impact Survey (I-WISh). Poster presented at the British Haematology Society Annual Meeting April 16–18, 2018. Liverpool. PO-022.
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Data on file I-WISh Global Survey Report 2018.
IE | May 2022 | 174745
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