ITP introduces a multifaceted burden on patients' lives, including a high-symptom burden and negative impact on emotional well-being and ability to work. Fatigue is a frequently reported and severe symptom and patients who experienced a delayed diagnosis also reported experiencing anxiety as a result.
- ITP is defined by isolated thrombocytopenia (platelet count less than 100,000), with the diagnosis relying on exclusion of other causes of thrombocytopenia.
- Estimated incidence ranges from 10 to 70 cases per 1,000,000 per year.
- Previous studies have highlighted fatigue as an important morbidity; however, limited data are available on the overall impact of ITP on the patient's quality of life (QoL).1,2
- The I-WISh survey results aim to understand the impact of ITP on patient QoL using a global patient and physician sampling frame. Here, we present preliminary data from the patient survey.
- The following presents preliminary data from the patient survey.
- I-WISh is a cross-sectional survey of ITP patients over 18 years old and physicians in 14 countries. Patients were recruited via physicians and patient support groups.
- This interim report includes data from 1400 patients in 12 countries (USA, China, UK, France, Germany, Italy, India, Canada , Turkey, Colombia , Spain, Japan).
- Patients completed a 30-minute online survey, designed and endorsed by a steering committee including expert clinicians and patient advocacy leads specializing in ITP, providing information on demographics, diagnosis experience, symptoms, impact on daily living and emotional well-being, QoL, and their treatment and management.
- As of May 14, 2018, 1,400 patients had completed the survey; 65% female, mean age 47.1 years (Table 1); 172 patients were excluded.
- Most (63%) reported a high score for their current health state (Table 1); only 15% reported a low score.
Initial Presentation and Diagnosis
- Mean time from initial presentation to a healthcare professional and ITP diagnosis was approximately 113 (568) days, median 14 days.
- NB: Some patients reported experiencing ITP symptoms for their whole life, but not receiving a diagnosis until later life.
- Initial presentation was most frequently made to a general practitioner, whereas diagnosis was made by a hematologist (Figure1).
- The mean number of physicians seen by the patient before receiving the ITP diagnosis was 2.6.
ITP Symptoms and Severity
- The most frequently reported signs and symptoms at diagnosis and at the time of survey completion were bruising (of the skin/mucous membranes), fatigue , and petechiae (Figure 2A).
- Fatigue was reported as one of the most severe symptoms, 75% at diagnosis, and 66% at time of survey completion (Figure 2B).
- At diagnosis , heavy menstrual bleeding (85%) and anxiety surrounding unstable platelet count (78%) were also reported as the most severe symptoms (Figure 2B).
- At survey completion, thrombosis (73%) and anxiety surrounding unstable platelet count (66%) were also reported as the most severe symptoms (Figure 2B).
Impact of ITP on Patients’ QoL
- ITP significantly impacted on QoL and daily living (Figure 3).
- 44% of patients reported that ITP impacted on their energy levels more than half the time.
- 36% said ITP had a negative impact on their normal capacity to exercise more than half the time.
- 64% patients who reported that ITP impacted on their energy levels more than half the time, also said that ITP had a negative impact on their normal capacity to exercise more than half the time.
- This preliminary data analysis demonstrates the multifaceted burden of ITP on patients' lives.
- Diagnosis was delayed in up to a quarter of patients, causing them anxiety.
- There was high-symptom burden, and a negative impact on emotional well-being and patients' ability to work, despite a preponderance of ITP patients in “good health.”
- Fatigue was a frequently reported and a severe symptom; patients indicated a desire to increase their energy levels, suggesting patients are often very concerned with the impact of ITP on their QoL.
- These results highlight a need to further explore and define the overall disease burden of ITP, and to consider how to include these findings in the management of ITP in these patients.
- Hill QA & Newland AC. Br J Haematol 2015; 170: 141-149.
- McMillan R et al. Am J Hematol 2008; 83: 150-154.