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Managing the Chronically Ill Population in the Absence of Medical Support During COVID-19

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There’s a health crisis happening behind the scenes

This is by no means an attempt to take the focus off COVID-19 sufferers or the heroic healthcare workers involved. Quite the opposite actually. Because almost every human being on this planet is now a sufferer – infected or not – as all of us have our own personal challenges. As someone living with inflammatory bowel disease (IBD), I sure have mine. This disease is hard to live with on a daily basis without a pandemic. And research currently held by the Dutch IBD patient foundation shows that patients are suffering from the absence or delays in medical support.

Remission to inflammation and back

IBD, like many other chronic illnesses, is marked by times of remission (relatively good health) and flare-ups or inflammations (relatively bad to worse health). Flare-ups can be caused by many factors. Some of them are triggered by the physical nature of the disease and therefore remain mainly unexplained. But some of them can be explained by lifestyle behavior and the personal environment of the patient; such as an unbalanced diet, lack of exercising, poor work/life balance, high-stress levels, and so on.
During times of remission, you can have a relatively normal life, although it differs from one person to another. But there is never a complete peace of mind. There is always the glooming inflammation waiting around the corner; you always have to be prepared for a sudden influx of symptoms.
This can be stressful, and the stress makes the illness worse… you get the picture. A well balanced and safe environment to live in is very important to keep stress levels down and to have the opportunities to take care of yourself – and to have a health system available for medical care and advice when needed. This brings at least some peace of mind.

Postponed medical care is a cause for concern

Like many other chronic disease patients, IBD patients have to undergo regular medical examinations. These include colonoscopies, blood tests, and fecal tests. As a natural result of the COVID-19 situation, the majority of these planned procedures have been canceled or postponed – even for patients that might be in a vulnerable state. The decision made is based on balancing the risks of staying at home without medical examinations versus the risks of going out in public and into a hospital with the potential of getting infected with COVID-19 and the risk of complications due to IBD and immunosuppressant medication.
The Dutch IBD patient foundation’s research, which at the time of writing includes over 300 completed questionnaires, shows that almost half (49%) of IBD patients had scheduled medical examinations or procedures postponed.
For these patients, this is an important part of their support system. As the regular check-ups provide some peace of mind for patients living with the constant threat of illness.

Uncertainty-induced stress as a trigger for new symptoms?

The impact of the absence of regular medical support for chronic disease patients is imminent. The IBD patient foundation research reports that 83% of respondents have serious concerns about their own health during the COVID-19 crisis. In a time where this group of millions of people is considered ‘vulnerable’ or ‘high risk’, the absence of regular hospital visits and medical examinations is a cause for uncertainty and stress.
The medical systems around the world are focused on flattening the curve on COVID-19 infections and supporting healthcare professionals’ workload, which is justified. The downside is that a vulnerable part of the population is considered low priority, which is also justified. But just the fact that something is justified does not mean there is not a problem. The uncertainty-induced stress these patients experience can potentially fuel an influx of non-COVID-19 illnesses and additional workload for medical professionals.

Enabling self-management of physical and mental well being

The current crisis could spark a real change in healthcare. The implementation of digital health solutions in recent years has been slow – dragged by traditional processes and evidence-generating models. With the majority of the world’s population in home isolation or complete lockdown, the adoption of digital solutions needs to be fast-tracked. In digital health specifically, we have already seen policies changed within days to make massive adoption possible, and more and more health systems globally are implementing or providing digital health solutions to accommodate a population in need.
This also means that prescribing digital tools should be treated in the same way; many health systems now make a clear distinction between traditional and digital (or e-health, an even worse description) solutions when it comes to reimbursement. In order to create a more personal and more efficient way of treating and managing patients, this needs to change.
Digital health solutions will, maybe, after this period of time simply be called health solutions. We don’t need separation in traditional and digital anymore – these will blend together to form a new standard. Unlike any other time, digital health plays an important role in supporting patients during a pandemic trying to stay healthy at home, both physically and mentally.
Enabling self-management of vulnerable patients is now more important than ever to avoid an unexpected increase of health system workload by chronic disease patients that experience a lack of medical support. And just like managing the COVID-19 crisis, we need everyone involved to make this happen.

References:

  1. Dutch IBD foundation
  2. Dutch IBD Poll Results
  3. Dutch IBD Full Study – pdf
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