ACROVID – Outcomes of two international surveys on Acromegaly during the pandemic era

ACROVID  is an international survey that was developed to determine how acromegaly patients were managing (or not) their treatment as the COVID-19 pandemic gradually spread across the globe. The survey was developed through the collaboration of three diverse stakeholders: a global patient organization, esteemed endocrinologists, and an independent medical educational company.[1]

The discussion and idea began in May 2020, just as the pandemic had reached a total of 3,917,366 cases globally.[2] As the virus spread, pituitary patients began to report the impossibility of seeing their endocrinologists and other medical experts.

The first edition of the ACROCOVID global survey was launched at the end of June 2020 and ran until the end of July 2020, with the hope that endocrinologists, neurologists, nurse specialists and patients would be able to respond. The survey was available in English, French and Spanish for all healthcare professionals and people living with Acromegaly.

The results of the first survey were elaborated and an article abstract “ACROCOVID: An international survey on care for acromegaly during the COVID-19 era” was submitted to the Endocrine Journal in October 2020 with supplementary material reporting the results of the patient respondents.[3]


As the pandemic continued to spread, patients’ challenges to not only see their endocrinologists, but to have surgery and simple access to treatment increased exponentially: regular wards turned into emergency COVID-19 wards, and access to hospitals was all but cut off.

By early 2021, it had become clear that SARS-CoV-2 virus was creating a pandemic of epic proportions, with no end in sight, impacting 223 countries and reaching over 3,7 million cases globally.[4] WAPO was once again invited to take part in a second edition of the ACROCOVID survey, this time trying to understand how patients were coping with treatment management.

In the months and weeks ahead of the 2021 e-ECE held in May (online), WAPO was given the opportunity to submit an abstract and present the results of the patient and healthcare professionals in the newly created ‘Patient HUB’ section and raise awareness of the second edition of the survey.

ACROCOVID II focused exclusively on endocrinologists and patient experiences and was officially launched at the end of April 2021 and ran until the end of June. As we were aiming at a truly global audience, the survey was available in 6 different languages and was shared through a varied of social media channels.

This time a poster abstract “ACROCOVID II: an international survey on acromegaly management more than 1 year into the COVID-19 pandemic era” was submitted to the NORD Breakthrough Summit 2021 held in October 2021 and was accepted as a top submission. This implied we had the unique opportunity to present a short, 5-minute audio recording to describe the main points of the poster.

Both Doctor Mark Gurnell (Prof. of Clinical endocrinology at University of Cambridge) and Dr Maria Fleseriu (OHSU, Portland USA), co-authors, expressed their appreciation for the work well done.

The recording of the poster presentation is available on-demand on the NORD platform.
The data collected from the ACROCOVID II survey suggests that although the pandemic has substantially affected the clinical care of acromegaly, both patients and physicians seem to have embraced the ‘new normal’ of using remote consultations (i.e. telemedicine).

We are now in the third year of the pandemic and much has changed in our lives – we would even say ‘revolutionized’ it, clearly indicating that digital health is here to stay and that while it may help many rare and chronic disease patient communities as well as healthcare professionals, there is still much work to be done to bridge the inequalities in access to treatment and medicines worldwide.

1.0 ACROCOVID II – Slide deck light

 

[1] We are grateful to Ipsen, COR2ED and the esteemed medical experts for their support and engagement.

[2] https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200510covid-19-sitrep-111.pdf?sfvrsn=1896976f_ (accessed on 06.02.2022)

[3] https://www.endocrine-abstracts.org/ea/0070/ea0070aep1074 (accessed on 06.02.2022)

[4] https://www.who.int/docs/default-source/coronaviruse/situation-reports/20210202_weekly_epi_update_25.pdf  (accessed 6.02.2022)

 

Leave a reply