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.

INTRODUCTION

  • 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.

 METHODS

  • 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.

RESULTS

Patient Characteristics

  • 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.

 I-WISh table 1

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.

 I-WISh figure 1

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).

I-WISh figure 2a

I-WISh 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.

I-WISh figure 3

 

I-WISh figure 4

 

I-WISh figure 5

CONCLUSIONS

  • 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.

 

REFERENCES

  1. Hill QA & Newland AC. Br J Haematol 2015; 170: 141-149.
  2. McMillan R et al. Am J Hematol 2008; 83: 150-154.

 

RESULTS POSTER

Download

 


More I-WISh Study Pages:

WHAT IS I-WISh?     PATIENT-PHYSICIAN PERCEPTIONS     PATIENT STORIES