Autistic people across Europe have struggled to access COVID-19 services during pandemic

Likely result: rises in associated deaths, ill health, and poor quality of life, warn authors

Autistic people across Europe have struggled to access COVID-19 services during pandemic
Autistic people across Europe have struggled to access COVID-19 services during pandemic

Autistic people across Europe have not only struggled to access standard health and care services during the pandemic, but, crucially, also those for COVID-19, finds research published in the online journal BMJ Open.

The likely consequences of this widening of existing health inequalities for this community, will have been to increase associated deaths, ill health, behavioural issues and poor quality of life, warn the authors.

Amid concerns that the pandemic had excluded some vulnerable groups from health and care services, the researchers reviewed the regional and national policies and guidelines of 15 European Union countries on access to COVID-19 treatment for autistic people, published between March and July 2020.

They looked specifically at autistic people’s access to COVID-19 testing; provisions for hospital and intensive care treatment; and changes to standard health and social care services.

They also analysed survey data from Autism-Europe on the lived experiences of 1301 autistic people and caregivers in the included countries: Spain; Italy; Greece; the Netherlands; Switzerland; France; the UK; Germany; Malta; Belgium; Luxembourg; Austria; Ireland; Poland; and Portugal.

The findings showed that autistic people experienced significant barriers when accessing COVID-19 services.

Despite being at heightened risk of serious illness, if infected with coronavirus, because of co-existing health conditions, autistic people weren’t prioritised for COVID-19 testing.

The authors point out that between 5% and 25% of autistic people live in residential care, with up to a further 27% living in supported accommodation, where transmission rates were high in the first wave of the pandemic.

Even in countries where those with underlying conditions and those living in ‘high risk’ settings were prioritised for access to testing, there was no guidance for those living in supported accommodation and the community.

Nor was there any guidance on enhancing the tolerability (and therefore accessibility) of test procedures for autistic people, many of whom have sensory sensitivities around swabbing, for example, and don’t cope well with changes to their routine, such as visiting unfamiliar test sites, note the researchers.

Second, many COVID-19 outpatient and inpatient treatment services were extremely hard to access, largely because of individual differences in communication needs–access to use phone services, for example.

Third, intensive care unit triage protocols in many European countries directly or indirectly excluded autistic people from life-saving treatments.

Many of these protocols require ‘frailty assessments’ which refer to an individual’s dependency on others for assistance with daily care needs and personal care.

While the unsuitability of these assessments for autistic people was recognised in some countries, including in the UK and the Netherlands, measures to prevent the misapplication of frailty and cognitive function assessments haven’t been implemented systematically across European countries, note the researchers.

Finally, abrupt interruptions to standard health and social care with no mitigating measures in place left over 70% of autistic people without everyday support, the survey responses showed.

Around a third of those surveyed said they required daily support (35%; 451) and another third said they required occasional support with routine activities of daily living (33%; 431).

Many services were already stretched before the pandemic, including autism diagnostic services, for which average waiting times can be well over a year, while many community services for autistic people were forced to close, say the authors.

In light of their findings, they make a raft of policy and clinical practice recommendations to reduce health and social care inequalities for autistic people across Europe during public health emergencies.

These “require particularly urgent consideration to enhance the future care of autistic people both during and beyond the pandemic,” they conclude.

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Risk factors for a severe course of COVID-19 in people with diabetes


People with diabetes are at increased risk of developing a severe course of COVID-19 compared to people without diabetes. The question to be answered is whether all people with diabetes have an increased risk of severe COVID-19, or whether specific risk factors can also be identified within this group. A new study by DZD researchers has now focused precisely on this question and gained relevant insights.

The COVID-19 pandemic poses unprecedented challenges to science and the health sector. While in some people with a SARS-CoV-2 infection the disease is hardly noticeable, in others it is much more severe and sometimes fatal. So far, knowledge about the course of a COVID-19 disease is still quite meager. However, diabetes has increasingly emerged as one of the risk factors determining the severity of the disease. Several studies on diabetes and SARS-CoV-2 have already observed an approximately two- to threefold increase in mortality due to COVID-19 in people with diabetes compared to people without diabetes. This makes it all the more important to conduct studies that examine the risk factors of people with diabetes for severe COVID-19 disease in more detail.

A new study of the German Diabetes Center, partner of the DZD, led by Dr. Sabrina Schlesinger, head of the junior research group Systematic Reviews at the Institute for Biometrics and Epidemiology, therefore examined the risk phenotypes of diabetes and their possible association with the severity of COVID-19. In their meta-analysis, the researchers combined the results from 22 published studies, so that a total of more than 17,500 people with diabetes and confirmed SARS-CoV-2 infection were included in this study. For individuals with diabetes and SARS-CoV-2 infection, male sex, older age (>65 years), high blood glucose levels (at the time of hospital admission), chronic treatment with insulin, and existing concomitant diseases (such as cardiovascular disease or kidney disease) were identified as risk factors for a severe COVID-19 course. On the other hand, the results showed that chronic metformin treatment was associated with a reduced risk of a severe course of COVID-19.

“This current systematic review and meta-analysis describes within the high-risk group, namely diabetes mellitus, those individuals with the highest risk of a severe COVID-19 course,” said Professor Michael Roden, scientific director and board member of the German Diabetes Center. “These results will help to classify individuals with diabetes even better in order to improve their therapy and mitigate the course.”

The risk factors identified in the study – i.e. older persons, usually male, with comorbidities of diabetes and chronic insulin treatment – can thus be seen as indicators of diabetes severity or overall poor health. “However, some results, especially on diabetes-specific factors such as type or duration of diabetes and further treatments, are still imprecisely assessed and the significance is low. In order to strengthen the significance, further primary studies are needed that examine these specific risk factors and consider other relevant influencing factors in their analysis,” said Dr. Schlesinger. Her research team is therefore already working on a next version of this review: “This review presents the current study situation and will be updated regularly as long as new findings on this topic are available,” said Dr. Schlesinger.

Should masks be worn outdoors?

Should masks be worn outdoors?

Mask wearing by the public, particularly outdoors, remains controversial. But should masks be worn outside, in some circumstances, to help reduce covid-19 virus transmission – or should efforts focus on reducing indoor transmission where risks are greater?

Experts debate the issue in The BMJ today.

Babak Javid at the University of California San Francisco and colleagues acknowledge that the risk of covid-19 virus transmission is far greater indoors than outdoors. Nor do they support policies that mandate masking outdoors when someone is alone or only with members of one household.

But they argue that wearing masks outdoors, particularly at large outdoor gatherings with prolonged close interactions, should be normalised because it may reduce virus transmission and encourage mask wearing indoors, where risks are greater.

They say fears of increased transmission after mass protests in support of the Black Lives Matter movement were not realised, whereas the mass outdoor Sturgis Motorcycle Rally in South Dakota, USA, is thought to have been the trigger for a huge superspreading-type event.

One proposed reason for these differences is that the Sturgis Rally was associated with lower compliance with measures such as mask wearing and physical distancing that are associated with decreased transmission risk, they explain.

They also point to data from the US and Germany showing that regions with public mask mandates have had a lower impact from the virus, while countries with early adoption of face coverings for the public also achieved an earlier acceptance of a social norm during the pandemic.

In summary, they argue that “wearing masks outdoors, particularly at large outdoor gatherings such as sporting events or other settings where it will be difficult to maintain physical distance for prolonged periods, which may have a low but measurable risk of seeding a superspreading event – as well as normalising mask wearing behaviour in general – will bring benefits in reducing risks during the pandemic phase of covid-19.”

But Dr Muge Cevik at the University of St Andrews and colleagues argue that outdoor transmission contributes very little to overall infection rates and efforts should focus on reducing indoor transmission.

No confirmed sizeable covid-19 clusters or “superspreader” events have been outdoors-only, they say. While the Sturgis Rally in South Dakota or the Rose Garden outbreak at the White House are frequently cited as evidence for outdoor-only superspreading events, these events had sustained and multi-day indoor components. For instance, epidemiological investigation of Sturgis Rally found cases linked to restaurants and workplaces.

Given the low risk of transmission outdoors, recommendations or mandates for outdoor masking may seem arbitrary, affecting people’s trust and sustained energy to engage in higher yield interventions, such as indoor mask use or staying home if sick, they write.

What’s more, an outdoor mask requirement “might serve as a disincentive to be outdoors, which could worsen social isolation.”

Equity concerns are also vital, they add, because people who have access to back gardens or can afford private transport to less population dense areas can enjoy the outdoors unmasked, while many others without such privileges or resources cannot enjoy fresh air or exercise unmasked in settings where mask use is universally mandated outdoors.

They believe the public should be informed about the evolving scientific understanding of transmission mechanisms and should be encouraged to be most vigilant in indoor settings, while noting that prolonged and close contact outdoors may pose a risk.

Ultimately, outdoor mask mandates may be popular in some settings, as they are among the most “visible interventions” purporting to demonstrate decisive leadership, they write.

“However, these mandates do little to tackle the real transmission risks or to address outcomes of socioeconomic inequities and structural racism, driving a disproportionate number of the infections and consistent disparities observed worldwide,” they conclude.

A linked article asks what do we know about airborne transmission of SARS-CoV-2? The World Health Organization is currently of the opinion that viral transmission by aerosols, while possible for covid-19, is not the main route by which SARS-CoV-2 spreads.

And in a linked commentary, The BMJ‘s patient editor explains why she wears a mask indoors and out. “Wearing a mask doesn’t mean that you are weak or cowardly. It’s a way to protect vulnerable people around you,” she writes. “I am vaccinated, yet I wear a mask inside or outside in solidarity with those who are still vulnerable.”