Living with ITP 

Immune thrombocytopenia has a substantial, multifaceted impact on patients' health-related quality of life (HRQoL).¹

The impact of ITP will vary from person to person and the reasons for symptoms may also differ.

Fatigue is one of the main symptoms of ITP reported by patients. Various studies show that at least half of people living with ITP experience fatigue that can often interfere with everyday life.¹

The fatigue experienced by people with autoimmune diseases such as ITP is different from the normal, temporary fatigue we all feel after a taxing activity such as concentrating for a long time or vigorous exercise, or after a poor night’s sleep. That kind of fatigue goes away with rest. But ITP-related fatigue can be debilitating and can interfere with people’s ability to engage in everyday activities. In some cases when the platelet count is low it goes beyond a feeling of tiredness to brain fog and an inability to carry out simple tasks like recalling a two-digit number after ten seconds.² ITP patients have described how they are obliged to take time out from their work or studies to sleep during the day.³

People living with ITP may worry about how bleeding could affect their work and social activities. For most people, the impact of ITP on their quality of life seems to reduce after the first year.⁴ This may be partly because they learn coping strategies to adapt and live with the condition, and partly because they respond well to treatment.

Many of those living with ITP report impacts on their emotional wellbeing, with emotional and mental stress and anxiety, and a greater risk of depression.^5,6

References

1 Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): Impact of ITP on health-related quality of life
https://pubmed.ncbi.nlm.nih.gov/33107998/

2 https://www.sobi.com/en/stories/changing-itp-together

3 AOB Annals of Blood Immune thrombocytopenia: the patient’s perspective Subheading Quality of life > Physical function > Fatigue + Video 1
https://aob.amegroups.com/article/view/6146/html

4 Immune thrombocytopenia: improving quality of life and patient outcomes Patrick Trotter and Quentin A Hill 2018:9:369-384
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2275726/

5 Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspective | Health and Quality of Life Outcomes | Full Text (biomedcentral.com) 
https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-6-13

6 Qualitative study to support the content validity of the immune thrombocytopenia (ITP) Life Quality Index (ILQI) - Cooper - 2021 - British Journal of Haematology - Wiley Online Library 
https://onlinelibrary.wiley.com/doi/full/10.1111/bjh.17694