Providing answers to respiratory patients' questions during COVID-19

Developing the resources

Initially an email was sent out to the patient organisations that are part of the ELF network [1] to ask if they were aware of questions that patients had. In parallel, the ELF team started to collate questions that they thought may be important for respiratory patients. On 3 March 2020, ELF contacted Professor James Chalmers, an ERS expert in infectious diseases, to ask whether he would be willing to answer a few of our enquires so they could be added as a question and answer (Q&A) section on the website; he agreed.

After publishing the first Q&A, questions started to flood into our inbox. Between 6 March 2020 and 19 June 2020 we received 875 questions. The team were unable to answer these all directly, so an automated response was set-up to acknowledge receipt and direct them to the Q&A where their questions would be covered. Questions had their personal identifiers and specific information removed to leave the core question: e.g. “I have bronchiectasis, am I at higher risk if I catch COVID-19?”. These were then sent to Prof. Chalmers and posted onto the ELF website in the form of a Q&A, which was updated weekly.

Concurrently, some ERS members got in touch with ELF to ask whether we had a resource for them to signpost patients to as they did not have the capacity to respond directly. They too used the Q&A for this purpose.

Rapidly developing situation

Answering questions about COVID-19, especially in the early stages, was difficult as there were often no clear answers. The lack of clarity for the public and people living with lung conditions led to increased anxiety about the disease, which was evident in the types of questions that were being asked. As more information was gathered, the advice evolved and changed on a regular basis. This made it difficult to keep the website up-to-date and some information could not be posted as it evolved too rapidly to provide a useful picture for the public.

Different situations in different countries

The questions received by ELF came from many countries and continents, which meant that the challenges and government guidance were often different. The answers were checked to ensure that they could apply to all of Europe.

Need for different languages

ELF produces materials in nine core languages, but factsheets in up to 22 languages. The COVID-19 Q&A needed to be in as many languages as possible, but there were budgetary constraints. 11 languages were chosen: English, French, German, Italian, Spanish, Polish, Russian, Greek, Portuguese, Turkish and Persian. These included core languages and languages that volunteers came forward to help with. The translations were processed and uploaded weekly.

The questions asked

Initially the questions were more generalised and either focused on the disease, or the increased risk that underlying lung conditions might pose, for example: “I have sarcoidosis, am I more at risk of severe illness if I catch COVID-19?” or “I have asthma, am I more at risk of catching COVID-19?”.

People were fearful that they would die of the disease and directly asked if this would be the case. There were concerns about shortages of ventilators and whether having a pre-existing condition would mean that a “healthy” person would be prioritised over them.

Fears arose from stories in the media, e.g. people with asthma fearing their steroid inhaler might make them more susceptible to the disease. Some were altruistic and asked whether their noninvasive ventilation equipment could be adapted and used for ventilation for others.

As time moved on, and more people had contracted COVID-19, the questions evolved to concerns about family members who had the disease and whether they would recover or whether the symptoms a person was experiencing could be COVID-19.

Along with questions about the long-term health effects of COVID-19, some people asked questions about symptoms that they were experiencing months after having the disease. As lockdowns eased, the questions became more focused on local guidelines, wearing masks in public spaces, shielding and how people who are vulnerable can start return to work.

The places the questions came from

We have seen geographical variance throughout the pandemic, initially most questions were from native English-speaking countries, as were visitors to the ELF website pages. As the questions were translated and there was increased awareness, the visitors to the COVID-19 pages diversified. In total, people from 227 countries and territories have visited the website over the course of the pandemic; the top 20 of which can be seen in figure 1. The countries with the largest number of visitors were the UK and the USA with 92 735 and 45 170 users, respectively, for this period.

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Figure  1

Two line charts displaying the countries with the highest numbers of users of the ELF Q&A webpage (the UK and USA have been removed to show the other countries in more detail) in the period 1 March–13 July 2020: a) countries ranked 3–11; b) countries ranked 11–20.

As the visitors from other countries increased, so did the questions. Once the first wave in Europe had subsided, Mexico became the country with the fastest growing number of visitors, along with peaks from Argentina, Venezuela and Ecuador. This increase in access from South and Central America coincided with a peak in the questions being received from these areas.