Patients with immune thrombocytopenia frequently experience severe fatigue but it is under-recognized by physicians.
- Immune thrombocytopenia (ITP) has a multifaceted impact on patients’ quality of life (QoL);1 in particular, as in many chronic autoimmune diseases, fatigue can significantly affect QoL.2
- However, there are limited data on which signs and symptoms physicians and patients perceive as having the greatest impact, especially on patients’ QoL.
- The I-WISh survey was performed to evaluate the burden of ITP and its impact on QoL, especially fatigue, using a global patient and physician sampling frame.
- The data reported here analyze and compare patient and physician perceptions of occurrence and severity of signs and symptoms.
- I-WISh was an international cross-sectional survey of ITP patients 18 years and older, recruited via physicians and patient support groups, and physicians, recruited via local fieldwork agencies.
- Patients and physicians completed a 30-minute online survey that included demographics and the impact of ITP on QoL, emotional health, work productivity, and need for caregivers.
- A steering committee of expert physicians and patient advocacy ITP specialists designed and endorsed the survey materials.
Patient & Physician Demographics & Baseline Characteristics
- 1,507 patients from 13 countries (Canada, China, Colombia, Egypt, France, Germany, India, Italy, Japan, Spain, Turkey, UK, and USA) completed the survey (Figure 1A).
- 472 physicians from the same 13 countries completed the survey (Figure 1B).
ITP Signs and Symptoms
- The most common patient-reported signs and symptoms at diagnosis and at survey completion, respectively, were:
- Bruising 65%; 30%
- Petechiae 64%; 31%
- Fatigue 58%; 50%
- Menorrhagia 43%; 16%
- Anxiety around unstable platelet count 34%; 32%
The proportion of patients reporting each sign or symptom decreased from diagnosis to survey completion, apart from fatigue, increased headaches/migraine, dizziness, depression, and anxiety around unstable platelet count.
- The most common signs and symptoms physicians reported at diagnosis and overall (i.e. at any stage) were:
- Petechiae 82% overall; 83% at diagnosis
- Purpura 74% overall; 73% at diagnosis
- Bleeding of the gums 69% overall; 70% at diagnosis
- Epistaxis 69% overall; 70% at diagnosis
There were few differences between signs and symptoms at diagnosis and overall.
- By contrast, fatigue was under-reported by physicians compared with patient-reported data.
- Fatigue 31% overall; 30% at diagnosis
Severity of ITP Symptoms
- Fatigue - 73% at diagnosis; 65% by survey completion (Figure 2).
- Menorrhagia - 83% at diagnosis; 62% by survey completion (Figure 2).
- Anxiety surrounding unstable platelet count - 77% at diagnosis; 64% by survey completion (Figure 2).
- Thrombosis, while not common, was considered severe 60% at diagnosis; 74% at survey completion (Figure 2).
- Patient-reported severity generally decreased for all signs and symptoms from diagnosis to survey completion, apart from thrombosis, fatigue, and depression.
Impact of ITP Symptoms on QoL
- When asked to consider their current symptoms, the three symptoms patients most wanted to resolve were:
- Fatigue 46%
- Anxiety around unstable platelet count 24%
- Bruising 22%
- Physicians perceived several signs and symptoms as having a high impact on patients’ QoL:
- Blood in urine/stool 81%
- Profuse bleeding during surgery 79%
- Menorrhagia 78%
- Fatigue 59%
- Overall, 80% of physicians felt that ITP symptoms reduce QoL.
Physician View of ITP-Related Fatigue and Impact on Patients’ QoL
- 66% of physicians believed that ITP-related fatigue reduces QoL.
- 59% of physicians believed that fatigue is severe (Figure 5A).
- Physicians believed that the severity of fatigue increases as platelet levels decrease (Figure 5B).
- 79% of patients were generally satisfied with their physician’s management of their disease.
- Most patients and physicians reported high satisfaction regarding:
- Communication: 79% (patients) vs 88% (physicians)
- Management: 79% (patients) vs 86% (physicians)
- Understanding of treatment goals: 76% (patients) vs 90% (physicians)
- 87% of physicians believed that they understood how much ITP impacts patients’ lives.
- 69% of patients believed their physician understood the impact of ITP on their lives.
- The patient-reported symptom that was most common and had the greatest severity both at diagnosis and at survey completion was fatigue.
- Patients also frequently reported anxiety about platelet count stability and menorrhagia; thrombosis was less common but was reported as most severe.
- Patients indicated that the top-three symptoms they would most like to be resolved were fatigue, anxiety around unstable platelet count, and bruising.
- Although participating physicians were experienced in ITP management and believed that fatigue greatly affects patients, they did not consider fatigue to be as substantial a problem as patients did.
- Physicians believed the likelihood of fatigue would increase as platelet count decreased.
- It has been suggested that fatigue may be intrinsically related to disease activity and, therefore, could be alleviated by increasing the platelet count.
- These results indicate that patients and physicians agree on the overall symptom burden in ITP but highlight that improved understanding and awareness of the relationships between fatigue, platelet count, and QoL are needed.
- McMillan R et al. Am J Hematol 2008;83:150–154.
- Hill QA & Newland AC. Br J Haematol 2015;170:141–149.
More I-WISh Study Pages:
WHAT IS I-WISh? DISEASE BURDENS & QUALITY OF LIFE PATIENT STORIES I-WISh TOOLKIT