Fatigue as a Significant Symptom of Immune Thrombocytopenia from the Patients' Perspective

Introduction

Primary ITP is an autoimmune disease characterized by a reduced platelet count (< 100 × 10⁹/l) and an increased risk of bleeding with no identified cause. ITP affects patients not only by bleeding but paradoxically also through an increased risk of thromboembolic events and secondary complications arising from treatment. The impact of ITP on patients' quality of life is often overlooked, including unexplained fatigue, anxiety, depression, and headaches.

I-WISh Survey Participants

The cross-sectional ITP World Impact Survey (I-WISh) focused on how patients and physicians from 13 countries perceive ITP in terms of diagnosis, occurrence and severity of symptoms, and treatment. The survey included 1,507 adult patients with ITP and 472 hematologists who treat ≥ 3 patients with ITP. Participants were from China, Egypt, France, India, Italy, Japan, Canada, Colombia, Germany, Spain, Turkey, the United Kingdom, and the USA. Both patients and doctors completed a specifically designed questionnaire (online or printed), and patients also completed the ITP Life Quality Index questionnaire. The survey took place from December 2017 to August 2018. The average age of patients was 74 years, 95% were women, and the median duration of ITP was 5 years.

Diagnosis Process

The average time between the first doctor visit due to related issues and the diagnosis of ITP was 0.5 months. Diagnosis was faster for patients with bleeding, later (≥ 1 month) for patients with fatigue, purpura, and petechiae. In 86% of cases, the diagnosis was made by a hematologist. Sixty-three percent of patients needed more support during diagnosis, most often from the doctor or patient groups. Patients with significant symptoms sought more support from patient groups.

Evaluation of ITP Symptoms

The most common symptoms at the time of diagnosis reported by patients were petechiae, unexplained bruises, fear of unstable platelet counts, and fatigue. These symptoms were also the ones they most wanted to eliminate. At the time of the survey, the primary persistent symptoms were fear of unstable platelet counts and fatigue, which was reported by 58% of patients at diagnosis and 50% at the time of the survey.

Doctors reported that patients most often complained of petechiae, purpura, gum bleeding, and epistaxis. They considered hematuria, melena, profuse bleeding during surgery, and menorrhagia as symptoms that lowered quality of life. According to doctors, only 30% of patients complained of fatigue at the time of diagnosis.

Treatment Goals According to Patients and Doctors

The top three treatment goals for doctors were reducing the frequency of spontaneous bleeding, improving quality of life, and maintaining a normal blood count. According to patients, the main treatment goals were maintaining a normal blood count, preventing worsening of ITP, and having more energy.

Conclusion

The finding that patients with treated ITP perceive fatigue and fear of unstable platelet counts as the most significant challenges, unlike doctors, and that they need greater support from doctors, family, friends, and patient organizations, should be integrated into the comprehensive care of each ITP patient according to their individual needs.

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Source: Cooper N., Kruse A., Kruse C. et al. Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): Patient and physician perceptions of diagnosis, signs and symptoms, and treatment. Am J Hematol 2021 Feb 1; 96 (2): 188−198, doi: 10.1002/ajh.26045.