Nearly five years into the pandemic, COVID is feeling less central to our daily lives.

But the virus, SARS-CoV-2, is still around, and for many people the effects of an infection can be long-lasting. When symptoms persist for more than three months after the initial COVID infection, this is generally referred to as long COVID.

In September, Grammy-winning Brazilian musician Sérgio Mendes died aged 83 after reportedly having long COVID.

Australian data show 196 deaths were due to the long-term effects of COVID from the beginning of the pandemic up to the end of July 2023.

In the United States, the Centers for Disease Control and Prevention reported 3,544 long-COVID-related deaths from the start of the pandemic up to the end of June 2022.

The symptoms of long COVID – such as fatigue, shortness of breath and “brain fog” – can be debilitating. But can you die from long COVID? The answer is not so simple.

How could long COVID lead to death?

There’s still a lot we don’t understand about what causes long COVID. A popular theory is that “zombie” virus fragments may linger in the body and cause inflammation even after the virus has gone, resulting in long-term health problems. Recent research suggests a reservoir of SARS-CoV-2 proteins in the blood might explain why some people experience ongoing symptoms.

We know a serious COVID infection can damage multiple organs. For example, severe COVID can lead to permanent lung dysfunction, persistent heart inflammation, neurological damage and long-term kidney disease.

These issues can in some cases lead to death, either immediately or months or years down the track. But is death beyond the acute phase of infection from one of these causes the direct result of COVID, long COVID, or something else? Whether long COVID can directly cause death continues to be a topic of debate.

Of the 3,544 deaths related to long COVID in the US up to June 2022, the most commonly recorded underlying cause was COVID itself (67.5%). This could mean they died as a result of one of the long-term effects of a COVID infection, such as those mentioned above.

COVID infection was followed by heart disease (8.6%), cancer (2.9%), Alzheimer’s disease (2.7%), lung disease (2.5%), diabetes (2%) and stroke (1.8%). Adults aged 75–84 had the highest rate of death related to long COVID (28.8%).

These findings suggest many of these people died “with” long COVID, rather than from the condition. In other words, long COVID may not be a direct driver of death, but rather a contributor, likely exacerbating existing conditions.

‘Cause of death’ is difficult to define

Long COVID is a relatively recent phenomenon, so mortality data for people with this condition are limited.

However, we can draw some insights from the experiences of people with post-viral conditions that have been studied for longer, such as myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

Like long COVID, ME/CFS is a complex condition which can have significant and varied effects on a person’s physical fitness, nutritional status, social engagement, mental health and quality of life.

Some research indicates people with ME/CFS are at increased risk of dying from causes including heart conditions, infections and suicide, that may be triggered or compounded by the debilitating nature of the syndrome.

So what is the emerging data on long COVID telling us about the potential increased risk of death?

Research from 2023 has suggested adults in the US with long COVID were at greater risk of developing heart disease, stroke, lung disease and asthma.

Research has also found long COVID is associated with a higher risk of suicidal ideation (thinking about or planning suicide). This may reflect common symptoms and consequences of long COVID such as sleep problems, fatigue, chronic pain and emotional distress.

But long COVID is more likely to occur in people who have existing health conditions. This makes it challenging to accurately determine how much long COVID contributes to a person’s death.

Research has long revealed reliability issues in cause-of-death reporting, particularly for people with chronic illness.

So what can we conclude?

Ultimately, long COVID is a chronic condition that can significantly affect quality of life, mental wellbeing and overall health.

While long COVID is not usually immediately or directly life-threatening, it’s possible it could exacerbate existing conditions, and play a role in a person’s death in this way.

Importantly, many people with long COVID around the world lack access to appropriate support. We need to develop models of care for the optimal management of people with long COVID with a focus on multidisciplinary care.

Dr Natalie Jovanovski, Vice Chancellor’s Senior Research Fellow in the School of Health and Biomedical Sciences at RMIT University, contributed to this article.

Rose (Shiqi) Luo, Postdoctoral Research Fellow, School of Health and Biomedical Sciences, RMIT University; Catherine Itsiopoulos, Professor and Dean, School of Health and Biomedical Sciences, RMIT University; Kate Anderson, Vice Chancellor’s Senior Research Fellow, RMIT University; Magdalena Plebanski, Professor of Immunology, RMIT University, and Zhen Zheng, Associate Professor, STEM | Health and Biomedical Sciences, RMIT University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Neurodevelopmental conditions such as attention deficit hyperactivity disorder (ADHD) and autism affect about one in ten children. These conditions impact development, behaviour and wellbeing.

But children with these conditions and their caregivers often can’t get the support they need. Families report difficulties accessing health-care providers and experience long wait lists to receive care.

Digital tools, such as apps and websites, are often viewed as a solution to these gaps. With a single click or a download, families might be able to access information to support their child.

There are lots of digital tools available, but it’s hard to know what is and isn’t useful. Our new study evaluated freely available digital resources for child neurodevelopment and mental health to understand their quality and evidence base.

We found many resources were functional and engaging. However, resources often lacked evidence for the information provided and the claimed positive impact on children and families.

This is a common problem in the digital resource field, where the high expectations and claims of impact from digital tools to change health care have not yet been realised.

What type of resources?

Our study identified 3,435 separate resources, of which 112 (43 apps and 69 websites) met our criteria for review. These resources all claimed to provide information or supports for child neurodevelopment, mental health or wellbeing.

Resources had to be freely available, in English and have actionable information for children and families.

The most common focus was on autism, representing 17% of all resources. Resources suggested they provided strategies to promote speech, language and social development, and to support challenging behaviours.

Other common areas included language and communication (14%), and ADHD (10%).

Resources had various purposes, including journalling and providing advice, scheduling support, and delivering activities and strategies for parents. Resources delivered information interactively, with some apps organising content into structured modules.

Resources also provided options for alternative and assistive communication for people with language or communication challenges.

Most apps were functional and accessible

Our first question was about how engaging and accessible the information was. Resources that are hard to use aren’t used frequently, regardless of the information quality.

We evaluated aesthetics, including whether digital tools were easy to use and navigate, stylistically consistent, with clean and appealing graphics for users.

Most resources were rated as highly engaging, with strong accessibility and functionality.

But many lacked quality information

We ranked resources on various features from 1 (inadequate) to 5 (excellent), with a ranking of 3 considered acceptable. These ratings looked at how credible the resource was and whether there was evidence supporting it.

Despite their functionality, 37% of reviewed apps did not meet the minimum acceptable standards for information quality. This means many apps could not be recommended. Most websites fared better than apps.

There also wasn’t a lot of scientific evidence to suggest using either apps or digital resources actually helped families. Studies show long-term engagement with digital tools is rare, and downloads don’t correspond to frequent usage or benefits.

Digital tools are often viewed as a panacea to health-care gaps, but the evidence is yet to show they fill such gaps. Digital health is a fast-moving field and resources are often made available before they have been properly evaluated.

What should you look for in digital resources?

We found the highest quality resources were developed in collaboration with institutions, such as health, university or government groups.

One highly rated resource was the Raising Children’s Network and the associated app, Raising Healthy Minds. These are co-developed with a university and hospital, and by people with appropriate qualifications.

This resource provides information to support children’s overall health, development and wellbeing, with dedicated sections addressing neurodevelopmental needs and concerns.

Our research shows parents can assess whether digital resources are high quality by checking they are:

• factually correct. Look for where the app or resource is getting its information. Does the author have the qualifications and training to provide the information? Are they a registered health expert who is accountable to a regulatory body (such as AHPRA, the Australian Health Practitioners Regulation Agency) for providing information that does not cause harm?
• consistent across multiple credible sources, such as health institutions.
• linked to supporting information. Look for reliable links to reputable institutions. Links to peer-reviewed scientific journals are often helpful as those articles will also usually describe the limitations of the research presented.
• up-to-date. Apps should be frequently updated. For websites, dates of update are usually found on the homepage or at the bottom of individual pages.

Beware of red flags

Some things to watch out for are:

• testimonials and anecdotes without evidence and scientific links to back the anecdotes up. If it sounds too good to be true, it probably is.
• no information provided about conflicts of interest. Organisations gain when you click on their links or take their advice (financial, reputation and brand development). Think about what they gain when you use their information to help keep a balanced perspective.

Remember, the app’s star rating doesn’t mean it will contain factual information from a reliable source or be helpful for you and your child.

The role of digital tools

Digital tools won’t usually replace a health professional, but they can support care in many different ways. They may be used to help to educate and prepare for meetings, and to collaborate with health providers.

They may also be used to collect information about daily needs. Studies show reporting on sleep in children can be notoriously difficult, for example. But tracking sleep behaviour with actigraphy, where movement and activity patterns are measured using a wearable device, can provide information to support clinical care. With the promise of artificial intelligence, there will also be new opportunities to support daily living.

Our findings reflect a broader problem for digital health, however. Much investment is often made in developing products to drive use, with spurious claims of health benefits.

What’s needed is a system that prioritises the funding, implementation and evaluation of tools to demonstrate benefits for families. Only then may we realise the potential of digital tools to benefit those who use them.

Kelsie Boulton, Senior Research Fellow in Child Neurodevelopment, Brain and Mind Centre, University of Sydney and Adam Guastella, Professor and Clinical Psychologist, Michael Crouch Chair in Child and Youth Mental Health, University of Sydney

This article is republished from The Conversation under a Creative Commons license. Read the original article.