Outcomes Survey: ‘Living with Acromegaly in the Covid-19 era’

A global survey in English, Spanish and French to assess the effect of the COVID-19 pandemic on the management of acromegaly from the perspective of HCPs and people living with acromegaly.​

The surveys were drafted by a team including selected board members of WAPO (patient perspective), COR2ED (medical education specialist) and Profs. Maria Fleseriu, Andrea Giustina, Bruno Mario Cesana and Pietro Mortini (endocrine and neurosurgical perspective).

The final results are to be published in “Endocrine” magazine soon.
The survey was made possible by Ipsen.

The management of acromegaly is complex and multidisciplinary involving close relationships between patients, family, carers, endocrinologists, nurses, and neurosurgeons. And for people living with acromegaly, there may also be additional poignant aspects to consider. The endocrine system plays a significant role managing how the body deals with stress both emotionally and physically; even moderate or mild stressors can affect cortisol and other hormones. So, something that is of global concern, such as the COVID-19 pandemic, is unavoidably deeply felt by acromegaly patients as well as the entire population.

A recent survey (ACROCOVID) assessing the effects of the COVID-19 pandemic on the management of acromegaly and presented at the 22nd European Congress of Endocrinology (eECE), has highlighted the ongoing struggles and challenges felt by both healthcare professionals and acromegaly patients during this unprecedented era. Over 80% of endocrinologists said their patients contacted them looking for COVID-19 guidance. However, as a reflection perhaps on the uncertainly around the novel coronavirus, it is perhaps unsurprising that only between 11 and 19% of those surveyed provided proactive information to their patients.

Over half of all endocrinologists also agreed that COVID-19 has negatively affected the patient relationship including reduced contact and cancelled or suspended services. Switching to remote contact though worked very effectively with 86% phoning, 65% emailing and 35% having video consultations with patients. Patients also agree that remote consultations were beneficial and could continue moving forward with one patient stating that they “liked the longer than usual appointment (telephone) support.”

With acromegaly being a rare chronic condition, establishing a wide care network can be difficult with some patients lacking community support. ACROCOVID has highlighted how important it is for healthcare professionals, as trusted partners, to spend time with patients addressing their fears and concerns – something that has been difficult for all during the COVID-19 era. Over 50% of patients felt managing their condition got harder with nearly one quarter unable to access support services, and 30% not being able to get medicine. Worries about next confirmed appointments, delays in surgery, and accessing treatment only add to their heightened concerns.

Overwhelmingly, anxiety, fear of catching COVID-19, and loneliness stand out at the most impactful finding for acromegaly patients as a result of reduced healthcare team contact, isolation and lack of information as to when or how the situation will improve. Patients also highlight a need for enhancing valuable acromegaly resources with 38% of patients reporting increased use of Facebook and 26% using patient organization materials.

These results show that keeping the dialogue open between healthcare professionals, support organizations and patients is important. The COVID-19 pandemic has put on hold routine medical care for hundreds of millions of patients around the globe, however there are opportunities to examine how patient services can be adapted and transformed in the event of similar crises, while maintaining or even improving patient outcomes.


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