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
More than half (52%, n=~62/120) of the patients who took part in the survey reported feeling that their treating physician didn’t understand the impact ITP had on their life4
The physical impact of ITP
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:
- Immune thrombocytopenia (ITP) (2014). [PDF] Guy’s and St Thomas’ NHS Foundation Trust. Available at: www.guysandstthomas.nhs.uk/resources/patient-information/haematology/Imm.... Date accessed: May 2021.
- 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.
- Cooper N, et al. Am J Hematol. 2021;96:188–198.
- 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.
- Mathias S, et al. Health Qual Life Outcomes. 2008;6:13.
- 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.
- Data on file I-WISh Global Survey Report 2018.
