ITP from the Patients' Perspective: How It Affects Their Lives and Which Needs They Find Unmet?
In recent years, new therapeutic options for immune thrombocytopenia (ITP) have been introduced, which are effective for many patients and have significantly improved their quality of life. However, it remains crucial to listen to patients' experiences with treatment and any unmet needs they may have. A meeting of the Platelet Disorder Support Association brought forth many interesting findings and shared experiences. So what troubles ITP patients the most?
ITP Affects Not Only Blood Counts but the Patient's Whole Life
Immune thrombocytopenia is a rare autoimmune bleeding disorder caused by increased destruction of platelets and impaired platelet production. It is characterized by an immune response involving autoantibodies and cells against platelets. Many patients report that their ITP symptoms are relatively mild and include petechiae or hematomas. However, many also live with the fear of symptom worsening, which could be life-threatening. This fear affects their family and social lives, work productivity, and careers. Patients often describe their condition by saying that „ITP affects not only blood but also overall physical and emotional life“.
Physical and Mental Limitations Go Hand in Hand
One of the most commonly reported problems related to ITP is fatigue. This affects patients regardless of age and is a significant limiting factor in living with ITP. Parents of children with ITP also highlight fatigue as a problem, noting its impact on school performance and participation in daily activities.
Another less emphasized symptom is pain, the etiology of which is not entirely clear in the context of ITP. Pain could be a side effect of treatment or a direct part of the autoimmune disease itself.
From a psychological perspective, anxiety is the most commonly reported issue. It affects both adults and children with ITP and can manifest as nervousness or fear. Depression is another frequent psychological comorbidity, as with other chronic diseases, and it worsens with disease relapses. It can also be exacerbated by treatments such as corticosteroids.
Which Needs Do Patients Perceive as Unmet?
Information: Patients and their families would appreciate improved communication and information, such as precise protocols they could provide to employers or schools. These documents would clearly and accurately describe the limitations associated with ITP symptoms and circumstances under which medical care should be sought.
Communication with Healthcare Providers: Patients and their families need the ability to consult with specialists whenever new questions or symptoms arise. In these interactions, they wish to be partners in deciding the next steps.
Education: This covers topics such as bleeding risk, benefits and risks of different treatment options, or the strategy of watch and wait, which involves observation without treatment.
To meet these needs, it is beneficial to create patient organizations that can further improve and deepen communication and education.
Conclusion
Beyond the persistent bleeding risk, which can be severe, ITP patients and their families feel the physical and emotional impacts of this chronic condition, negatively affecting their quality of life. Better communication with healthcare providers and the ability to share concerns and experiences, for instance, through patient organizations, can help meet some of the needs these patients and their loved ones consider important.
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Source: Kruse C., Kruse A., DiRaimo J. Immune thrombocytopenia: the patient’s perspective. Ann Blood 2021 Mar 3; 6: 9, doi: 10.21037/aob-20-57.
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