Understanding, adapting and improving the management of patients living with acromegaly during COVID-19, and beyond.

The ongoing pandemic is bringing unprecedented health, economic and social changes, globally. For those with pre-existing health conditions, most of these challenges revolve around disease management. As a company that delivers essential treatments to patients living with rare diseases around the world, including those with acromegaly, we want to raise awareness of the impact COVID-19 is having on the management of acromegaly.

In many countries, Ipsen has rapidly adapted to ensure care continuity by establishing home delivery of therapies and to reduce the need for patients to travel to healthcare facilities during the pandemic. Additionally, we’re supporting several initiatives such as the ACROCOVID Survey, an international survey to assess the impact of COVID-19 on the lives and care of people living with acromegaly. The survey has been developed by COR2ED and the World Alliance of Pituitary Organizations (WAPO) in collaboration with international experts in the field of endocrinology. I invite the acromegaly community, including patients and healthcare providers (endocrinologists, neurosurgeons, and specialist nurses) to share their experiences.

Everyone’s journey with acromegaly is different. Treatment options include surgery, radiotherapy, and medical treatments. We want to find out how COVID-19 is impacting both patients living with acromegaly and their treating physicians. The survey will explore how the emotional, physical, and social challenges of those living with acromegaly has changed during the current pandemic, as well as the availability of healthcare professionals and treatment options. The aim is to uncover acromegaly COVID-19 related challenges/trends and use the data to drive solutions forward to support the acromegaly community during these unprecedented times, and beyond.

Acromegaly is a rare endocrine disorder, usually caused by having too much growth hormone in the body. Excess growth hormone is often caused by a benign tumor in the pituitary gland and can lead to symptoms such as heavy or prominent facial features, with a prominent jaw line and enlarged hands and feet.1 Although these symptoms are slow to develop, characteristic symptoms and signs occur over time. It has been estimated that worldwide there are around three to six people per million in the general population who are newly diagnosed with acromegaly each year.1

Supporting such surveys will help generating important insights into the challenges of diagnosing, treating, and living with acromegaly during this pandemic. We are looking forward to seeing the full results of this survey, potentially at the European Congress of Endocrinology (e-ECE) in September. In the meantime, more acromegaly resources and information to help support patients can be found here. Also learn more about Ipsen’s work in acromegaly here.

If you can share your experience in acromegaly, please use the links below to access the survey and make your experience count!

• Patient survey (also available in Spanish and French)
• Endocrinologist survey
• Neurosurgeon survey
• Specialist nurse survey (also available in Spanish and French)

References

1.    Acromunity: Acromegaly information and support. Available at: https://www.acromunity.com [Accessed July 2019]