How ITP Patients and Doctors Perceive Fatigue Differently — and How Journaling and Setting Goals Can Help
For patients, it’s about symptoms that impact their quality of life. For physicians, their focus is on the clinical signs and consequences– platelet counts and bleeding.
Addressing the disconnect between patient and physician perceptions of fatigue
Both physicians and patients agree that addressing fatigue is one of the most important goals in treating immune thrombocytopenic purpura (ITP) since, not only is it a common symptom, but it can have great impacts on daily life.
However, a study revealed a disconnect between patients and doctors on the level of impact that fatigue may have, with physicians underestimating how much it affects the patients in their practice. This finding was revealed in the ITP World Impact Survey (iWISh) a worldwide survey of over 1,500 people with ITP and 477 physicians who treat patients with ITP. The study results showed that, although 30–37% of physicians reported hearing about fatigue at diagnosis, almost double (58%) of patients claimed fatigue as their most frequent symptom and three-quarters of those surveyed reported fatigue was one of the most severe symptoms of ITP at diagnosis.
This discovery may be due to the fact that physicians focus on the signs of the disease, such as the reduction in platelets, while patients are more concerned about the symptoms of the disease and to what extent they impact their lives.
It is well known that, besides the physical symptoms like fatigue, ITP takes a toll on a person’s mental and emotional health. The worry over whether platelets are going down or the disease is progressing can cause emotional stress. You can experience a rollercoaster of emotions over whether treatment is successful or if there are troubling side effects. For example, people taking steroids reported weight gain or mood swings, and would only use these medications if they had no other choice.
The iWISh survey found that, even though increasing platelet count was one of patients’ top three goals from ITP treatment (aside for remission or a cure), the second top desire was preventing episodes of ITP from worsening and increasing energy levels, which reflects the impact of fatigue.
New study finds that setting goals can reduce fatigue
In a study of people with chronic illnesses such as fibromyalgia, arthritis, and inflammatory bowel disease, having a spirit of hopefulness reduced fatigue. A person who can identify a personally meaningful goal and work towards achieving it may feel less stressed and therefore less fatigued. Setting a goal can give them hope and increase their engagement in their disease management.
Managing fatigue through a health journaling app
People with ITP have also found that having an app to track their fatigue and emotional health was useful in their dialogues with their specialists. It particularly helped in getting doctors to understand the impact of fatigue and to provide recommendations on how to address it.
Try Know Rare’s HealthStoryAI journaling app, which, not only allows you to track your symptoms and tests, but also provides you with an insightful summary of your journal entries and responses from a standardized fatigue survey. Arm yourself for a better discussion with your specialist!
Source: Patient-centric care in primary immune thrombocytopenia (ITP): shared decision-making and assessment of health-related quality of life, Maitlanda H, Lambert C and Ghanima W. HEMATOLOGY2024, VOL. 29, NO. 1, 2375177https://doi.org/10.1080/16078454.2024.2375177
