The 1300-plus patient survey interim results show patients struggle with fatigue and maintaining control of daily functions.
Nichola Cooper, MD
A new survey has found that immune thrombocytopenia (ITP) negatively impacts patient quality of life.
Interim results of a 1300-plus patient survey on the rare blood disorder, as presented at the 23rd Congress of the European Hematology Association (EHA) in Stockholm, Sweden, reported that a portion of patients suffering from ITP have difficulties that extend into their physical, emotional, and professional life.
The I-WISh survey, a collaborative project among global leading experts in ITP, patient groups, and Novartis, is one of the largest surveys of patients with ITP ever undertaken. Its steering committee developed the 10-question ITP Life Quality Index (IQLI) tool to quantify and monitor quality of life impact of ITP on patients. The index was validated through qualitative analyses prior to being unveiled, and will be further used by physicians to help monitor symptoms aside from bleeding and platelet counts when treating patients with ITP.
Nichola Cooper, MD, clinical senior lecturer at Hammersmith Hospital, Imperial College London, and chair of the I-WISh Steering Committee, said that some patients only realize their fatigue has become an issue in their regular lives only after treatment has corrected.
“The ILQI tool will help measure this correction more accurately and could also play a crucial role in monitoring disease impact on quality of life beyond just relying on the platelet count alone,” Cooper said.
Interim results showed that 36% of surveyed patients reported a high impact on their emotional well-being was due to having ITP. Another 28% of patients had disease symptoms so severe that they caused them to miss work before. Fatigue (71%) was the most commonly-reported severe symptom at both patient diagnosis, and again at survey completion (64%).
"Severe fatigue, in particular, was reported by many patients as the most difficult to manage symptom of ITP," Cooper said. "This is an important message for healthcare providers treating patients with this rare disease; ITP is about more than bruising and risk of bleeding."
The 2 main treatment goals reported by patients were achieving healthy blood counts (79%) and increasing energy levels (55%). Responses in both difficulty to improve quality of life, and desires to improve condition symptoms and fatigue show that patients with ITP are having a day-to-day struggle to live and function properly, Samit Hirawat, MD, head of the Novartis Oncology Global Drug Development, said.
“We believe these results demonstrate that, even beyond medicine, ITP patients are seeking compassion, support and understanding from family, friends so they can strive to live the best lives they can. These are important insights, and we will look to build them into the programs and services we develop to better support this community,” Hirawat said.
The survey results were published by Novartis.