Doctors underestimate fatigue, mental burden of ITP, study shows
Doctors, researchers, support professionals urged to look beyond platelet counts
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Symptoms unrelated to bleeding, such as fatigue and mental health struggles, are common among people with immune thrombocytopenia (ITP) — but the impact of these non-bleeding symptoms may be underestimated by clinicians providing care to these patients, a study showed.
“ITP and its treatments impose substantial burdens on many patients,” the researchers wrote. “Bleeding, platelet counts, and treatments may be the most obvious, but the multifaceted effects on patient [quality of life], especially fatigue, are perhaps equally important. This includes effects on patients’ day-to-day functioning, mental health, energy level, and emotional wellbeing.”
The findings “underscore the ongoing complex challenges of disease management and the importance of aligning treatment outcomes not only with patient expectations but also [life quality] outcomes” and “suggest that more attention should be paid to improving not only platelet counts, but also the [health-related quality of life] of patients,” they wrote. “These considerations should be integrated into research, support programs and services in the future.”
The study, “Exploring the Burden on Patients Living With and Receiving Treatment for Immune Thrombocytopenia (ITP): Patient and Physician Perceptions From the ITP World Impact Survey (I-WISh) 2.0,” was published in the American Journal of Hematology.
ITP is an autoimmune disorder that leads to low levels of platelets, cell fragments that normally help blood clot. Low platelet counts can lead to symptoms such as prolonged and easy bleeding.
Surveys sent to patients, doctors
Seeking to better understand the lived experiences of people with ITP, an international team of scientists conducted a survey of patients around the world, and received answers from more than 1,000 people. A companion survey was answered by more than 400 physicians who regularly care for people with ITP.
Both patients and physicians generally reported bleeding-related symptoms as being common and potentially problematic for people with ITP. But for other non-bleeding symptoms, there were notable discrepancies between the two groups. For example, roughly half of patients reported that fatigue was a common and problematic symptom in their experience, but most physicians did not list fatigue as a common ITP symptom. Similarly, many patients reported mental health challenges such as depression and anxiety related to platelet counts, but physicians were markedly less likely to say mental health problems are a common issue in ITP.
“Patients considered fatigue to be more common than physicians, who, despite recognizing that fatigue has a high impact, may be more focused on bleeding and platelet counts or only recognize [fatigue] when it is severe,” the researchers wrote.
Patients often reported that ITP affected their day-to-day lives. Roughly a third said the disease had hampered their ability to work, and similar numbers said ITP affected their social lives and sexual activity. Many patients also reported that the disease stopped them from engaging in intense physical activity. In fact, fatigue was a better predictor of a patient’s avoidance of physical activity than total platelet count.
The data suggest that “there is a need for physicians of all levels of experience to explore with their patients the emotional burden of ITP and to collaboratively seek solutions to address this,” the scientists wrote.
Most patients and about half of physicians said they were satisfied with the currently available ITP treatments — but many patients also said they were worried that their treatments could cause immunosuppression (a weakened immune system), which was less of a concern for doctors. The researchers said this discrepancy may stem from patients’ misunderstandings of the immune system’s biology and the relative risks.
“Patient concerns related to immunosuppression may reflect the increased fear as well as both awareness and misunderstanding of this term following the COVID-19 pandemic, with common overestimation of its risk,” the team wrote. “Patient-physician communication should be further encouraged to educate on this topic.”
Overall, the survey results emphasize the importance of clear and collaborative communication between ITP patients and their doctors so that patients are equipped with the tools they need to manage the disease and maximize their quality of life. The researchers said their study “emphasizes the extensive disease and treatment burden faced by patients living with ITP, especially the impact of fatigue” and “reminds us that shared decision-making is needed to ensure treatment goals are aligned with patient expectations, including health-related quality of life.”
