Patient-Reported Outcomes to Assess Long COVID: A Review of Existing Tools and Benefits

Life Sciences, Clinical Trials,
  • Tuesday, June 13, 2023

The Coronavirus Disease 2019 (COVID-19) pandemic has had a significant global impact on public health and well-being for over three years. According to the World Health Organization, studies have reported that 10-20 percent of COVID-19 patients will go on to develop long COVID [1]. Research is still ongoing to identify long COVID and gather a deeper understanding of the natural history of this disease, alongside its management and long-term sequelae. However, these efforts will not be complete without capturing patients’ experience and the disease’s impact on their quality of life which can be measured through patient-reported outcomes (PROs).

This webinar aims to further understand long COVID assessments regarding PRO instruments and the concepts that have been researched.


The featured speakers share their findings on patient-reported outcomes (PROs) from ePROVIDETM databases, and Medline, to identify PRO instruments developed for and used in long COVID. Among 156 PRO instruments developed for COVID-19, identified in the PROQOLIDTM database, only a small number were specific for long COVID (eight PROs). This was also observed in published and ongoing long COVID studies. As so few PROs are developed specifically for use in long COVID patients, many generic instruments and other disease-specific instruments were used in clinical trials such as the EuroQoL 5-Dimension (EQ-5D), the SF-36 Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS) or the Modified Medical Research Council Dyspnea Scale (mMRC).

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The use of PROs is essential in assessing the impact of long COVID on patient’s quality of life and to facilitate the research and development of treatments. The speakers will discuss the potential need of further research to develop disease-specific PROs for the assessment of long COVID.

Join this webinar to discover how to select fit-for-purpose PRO instruments in any therapeutic indications. Learn why the ePROVIDETM platform and clinical outcome assessment databases can become valuable resources for researchers who are preparing clinical trials in long COVID.

  1. World Health Organization. “Post COVID-19 condition (Long COVID).” WHO, 7 Dec. 2022.


Sara Carvalho, Mapi Research Trust

Sara Carvalho, PhD, Lead Outcomes Researcher, Mapi Research Trust

Sara Carvalho manages a team of experts in consultancy in COA strategies at Mapi Research Trust. She has worked in a wide range of therapeutic areas, including oncology, cardiology, infectious and inflammatory diseases. She has authored manuscripts published in scientific peer-reviewed journals as well as presentations for international scientific conferences. Sara holds a PhD in cancer research from The Institute of Cancer Research, a master’s in cellular and molecular biology and a master’s in clinical trials and medical affairs.

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Nadine Kraft, Mapi Research Trust

Nadine Kraft, MSc, Team Lead, Database Unit, Mapi Research Trust

Nadine Kraft is the Team Lead of Mapi Research Trust’s Database Unit. Prior to her work at Mapi Research Trust she was complimenting her studies working in an international medical technology company. At the University of Salzburg, she graduated with a MSc in psychology and a specialization in cog. neuroscience and psychological diagnostic, including psychometric properties.

Message Presenter

Who Should Attend?

This webinar will be of interest to:

  • Clinical scientists, epidemiologists and those involved in clinical trials and comparative effectiveness research
  • Clinical outcome assessment (COA) scientists and psychometricians involved in development and validation of instruments for patient-reported outcomes (PROs) related to COVID-19

What You Will Learn

Attendees will:

  • Discover an up-to-date information source about use of patient-reported outcomes (PROs) in long COVID
  • Become familiar with the concepts of interest from the patients’ perspective in the management of long term effects of COVID-19 and its PRO landscape
  • Understand how ePROVIDETM clinical outcome assessment databases can help screening and selecting appropriate PROs for the use in any therapeutic indications

Xtalks Partner

Mapi Research Trust

Mapi Research Trust is a non-profit organization that facilitates access to Clinical Outcome Assessments (COAs) for the entire scientific community. With more than 30 years of experience in the field of COAs and with the online platform ePROVIDE™, which includes databases on COAs (PROQOLID™), claims (PROLABELS™) and guidance (PROINSIGHT™), Mapi Research Trust is the pre-eminent source of information on COAs.

Exclusive distributor of over 700 COAs, Mapi Research Trust is the most trusted name in the distribution of COA instruments.

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