WHAT IS ITP?
ITP is a rare disease, typically affecting around 3,000 patients in the UK at a given time.1 It is characterised by an abnormally low number of platelets – the cells that help the blood to clot. As a result, ITP patients experience excessive bruising and bleeding after suffering skin punctures and injuries.2
Due to the elevated risk of excessive bleeding and the visual impact that bruises can have, ITP affects the physical and emotional wellbeing of ITP patients in multiple ways. They may experience anxiety about their condition due to their inability to take part in sports; be unable to undertake physically demanding jobs; or limit their interaction with others due to the visual impact of the bruises.1,2
MEASURING THE BURDEN OF ITP
I-WISh was an international survey involving 1,507 ITP patients and 472 HCPs across 13 countries designed to capture the burden of ITP on patients' quality of life.3
In order to gain an in-depth understanding of the physical and psychological consequences of ITP on affected patients in the UK, the specific I-WISh survey data for the UK was analysed. 119 patient surveys were completed in the UK.1
The aim of the UK I-WISh survey was to investigate differences between patients’ and physicians’ perceptions of symptom burden, treatment goals and disease management. The key areas that were explored included information about:1
- Diagnosis experience
- Signs and symptoms
- Impact of symptoms
- Patient-physician relationship
SYMPTOM BURDEN OF ITP in the UK
The results from the UK I-WISh survey revealed that patients with ITP are burdened by a wide range of symptoms.1
- The most frequent symptoms affecting ITP patients in the UK, at the time of diagnosis were fatigue (66%) and bruising (75%)
- At the time the survey was conducted, the most common symptom persisting in UK patients was fatigue (59%)
EMOTIONAL BURDEN OF ITP
While the physical impact of ITP is well known, I-WISh examined the often overlooked emotional burden associated with this condition in the UK. The results highlighted that nearly one third of ITP patients were fearful or anxious about their condition. For patients in the UK, the biggest concerns about their disease were their capacity to maintain a safe platelet count (69%); worrying about fluctuations in platelet counts (45%); and their condition worsening over time (39%).1
These factors highlight the need for a treatment that will give ITP patients a sustained platelet count. In doing so these patients may experience the potential benefit of relief from the physical and psychological burden of ITP, improving their quality of life.1
IMPACT OF ITP ON DAILY LIVING
The I-WISh study offered important insights into how ITP disrupts patients' lives in the UK. It was clear that ITP exerts an enormous social burden, with 83% of ITP patients in the UK reporting that their condition had an impact on their energy levels, their ability to exercise and to undertake ordinary daily tasks. In addition, social and work life are also commonly affected in ITP patients.1
Abbreviations: HCP, healthcare professional; ITP, immune thrombocytopenia; I-WISh, ITP World Impact Survey.
- Cooper N, et al. Poster presented at the British Haematology Society Annual Meeting, April 16–18, 2018, Liverpool, UK. PO-022.
- Trotter P, Hill QA. Patient Relat Outcome Meas. 2018;9:369–384.
- Kruse A, et al. Presented at EHA 24th Annual Congress, Amsterdam, Netherlands, June 13–16, 2019. PF711.