Global I-WISh Survey Shines a Light on the True Burden of Life with ITP

One of the largest surveys ever conducted in immune thrombocytopenia (ITP), the ITP World Impact Survey (I-WISh) collaboration, revealed the extensive impact this rare blood disorder can have on people’s quality of life.

The I-WISh interviews and questions within this collaborative study developed by global ITP experts, patient groups and Novartis, were specifically designed to elicit in-depth insights and aid understanding, across both patients and healthcare providers. With results collected from 1,491 patients and 472 physicians across 13 countries in 2018, the I-WISh survey captured perceptions across areas including symptom burden, treatment decisions and impact on quality of life, demonstrating aspects of good practice and effective management of the condition, as well as areas
for improvement.

Around two-thirds of patients surveyed reported fatigue as their most severe symptom at both diagnosis and time of survey completion. In comparison, physicians didn’t include fatigue as a top five symptoms that patients were likely to present with at diagnosis. Overall, physicians perceived that just a third of patients experience fatigue. The survey highlighted that reports of fatigue and anxiety may not significantly decrease over time.

I-WISh survey findings also showed differing views between patients and physicians when asked to consider primary treatment goals. Across those surveyed, physicians selected reduction of  spontaneous bleeding as their number one treatment goal (46%), with patients highlighting healthy blood counts (35%) and increasing energy levels (20%) as their top treatment priorities.

In addition to identifying elements of care and communication between physicians and patients that might be improved to enable people with ITP to live well, I-WISh brought to light how it feels to live with ITP, and what patients need to ensure a good quality of life while coping with its everyday
impacts. Mervyn Morgan CEO ITPSA stated that “It is vital that physicians and patients discuss the full impact of ITP. This means talking about the burden of physical signs & symptoms, as well as the emotional impact, to determine the best treatment regime. This can
ultimately help improve disease management and quality of life for those living with ITP.”

The reality of ITP can encompass considerable challenges, from the physical effects of the condition – including impact on energy levels and physical activities – right through to practical difficulties, such as financial impact, all alongside what can be a significant emotional burden. The wide range of quality of life impacts identified illustrate the importance of measuring treatment needs and effectiveness by so much more than clinical markers.

Insights gathered by I-WISh should inform interactions between patients and healthcare professionals, enabling improvements in service and programme provisions. Furthermore, in a wider context, the perceptions captured by I-WISh offer the chance for greater tailored support to be provided to those affected by ITP where it is really needed, such as with well-being during diagnosis, meeting patient anxieties with compassion, and longer-term assistance around social and work-based activities.

It is understood that there can be a multitude of challenges associated with helping those affected by ITP. This is why the real-world insights provided by the I-WISh survey, and the voices of those living with ITP, must be listened to carefully. By promoting awareness and understanding, ultimately,
we can take action to improve lives.

Developed by Novartis for use by Patient Association Groups