IPWSO President Tony Holland reports on the survey responses received so far…

Shortly after COVID-19 had been declared a pandemic IPWSO set up a survey to better understand how COVID-19 infections might present in people with PWS and also to investigate the course and outcomes of the illness.

Our concern was that people with PWS may be more likely to become infected and then more likely to have a serious illness and poor outcome. As new information was published about risk factors for serious illness we became more concerned – obesity, diabetes mellitus, and respiratory disorders all being common in people with PWS and all identified as being associated with more severe illness in the general population following COVID-19 infection. 

We report below on the very early findings based on the first 16 responses (15 were fully completed). The small amount of responses received so far may be a positive observation that people with PWS are not being infected with COVID-19, but we do not believe that to be the case – we have heard of cases from many countries. We need much more information to understand whether or not people with PWS are at high risk from coronavirus and importantly whether or not the illness is diagnosed late because the presentation is atypical.

Wherever you live we want to hear from you if you know a child or adult with PWS who may have had or has been proven to have had a COVID-19 infection – please click on the link to complete the questionnaire – this will be of great help. It is not possible for us to translate to every language but it is in English, French, German, and Spanish. 

So, what have we found so far?

  • The ages of the people who we have received information on have been from 2 to 50 years.

  • As a group they appear to have been generally fit with low rates of other illnesses, such as diabetes mellitus.

  • Many had healthy BMI’s with less than half in the obese range, and only one person in the severally obese range.

  • Nine were confirmed by tests to have had COVID-19: three confirmed by a doctor, four diagnosed by others having been in contact with someone with COVID-19.

  • Six had a very mild course lasting less than a week, two also a mild illness lasting two weeks, five had a moderate severe illness lasting over two weeks and one person described as having had a severe illness.

  • Only one person required oxygen – this person was someone with sleep apnoea. Although this person was seen at hospital, because of concerns about low oxygen levels, they didn’t need admission and recovered in one week.

  • No-one else needed oxygen and no-one was admitted to hospital and all survived.

  • All remained living at their homes.

  • The most common presenting features were complaints of headache and generally feeling unwell and evidence of an increased temperature. 

It is not possible to draw any definite conclusions as the numbers are small and this group of people with PWS would in general appear to have been healthy. So far in this survey no one has been reported to have been hospitalised for COVID-19 – is this true for everyone? The majority have had tests for COVID-19 – is that generally the case or is access to tests limited for people with PWS? The one more serious case was a child, an unexpected observation as children do better than adults – how have other children with PWS been affected by COVID-19? One person was concerned as they thought having PWS was a barrier to good care – are there other examples of this?

More answers to the survey would help us understand the needs of people with PWS at this difficult time.  We are concerned about people with PWS who may be obese and may have diabetes mellitus, sleep apnoea, or respiratory problems – we don’t know what effect these might have.

As we recognise in our survey, it is particularly difficult for a family member or paid carer to complete the survey if the person with PWS they were caring for has died from the illness, but if you can this would provide important information that may help others, now or in the future. If you have supported someone with PWS through a COVID-19 illness please help us understand more about the infection – if English is not your first language do ask someone to help.

Thank you very much. Just to reassure you we do not ask for names and no one whose information you have provided for us can be identified.


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