The hidden suffering of Long COVID patients and how companies can help

As successive strains of COVID-19 become increasingly mild and effective vaccinations are available, people are less scared of infection and lives have returned to normal. Yet, even those experiencing the mildest reactions to initial infection could still risk the lingering and potentially more worrying symptoms of Long COVID.

Whilst the short-term impact of COVID-19 is well understood, many people continue to suffer from debilitating physical, mental and neurological symptoms. Long COVID is a condition often heard about but poorly understood, with symptoms that impact all aspects of people’s lives.

In collaboration with Peek Content and Medicys, we set out to better understand how Long COVID affects patients, including the challenges they face and how they could be better supported, via self-ethnography with patients:

  • 10 patients in the UK

  • 14 days of self-ethnography via mobile phones

  • All with chronic conditions, including diabetes and COPD

  • Mix of ethnicities

We captured the big moments that impact patients, as well as the micro-moments that in isolation, may be small and lack the saliency of big moments, yet accumulate to shape and define the patient experience.

1)   Wide-ranging impact

Long COVID is highly varied in its presentation, often influencing multiple systems at once which can be extremely debilitating. Patients consistently report severe physical symptoms such as fatigue and a persistent cough accompanied by psychological issues such as anxiety and depression. The disease has further ramifications on the patient’s life such as not being able to work, having little to no social life, and impacts on personal relationships.

Need for longitudinal studies

  • Being a new disease there is limited longitudinal data on Long Covid patients. There is an opportunity to comprehensively monitor patients to understand who is affected, how they are affected and for how long. This includes investigating the impact of Long Covid on patients with existing chronic diseases, to identify how treatments can be embedded in the care pathway.

2)   Uncertainty dominates

Sufferers speak of the unpredictable nature of their condition and not knowing when or how it might manifest – this makes planning a normal (work and social) life extremely challenging and puts strain on relationships. For example, fatigue is a symptom that is experienced by sufferers but is often very unpredictable. This makes it difficult to plan events around their Long COVID as they do not know when their fatigue will strike, leading to sufferers avoiding going to events altogether, which can lead to a massive deterioration in their social life.

Patient app for disease monitoring

  • Our patients requested an app that allows them to track symptoms and liaise with HCPs – accessing advice in one central information hub. A pharma-supported online forum/resources hub to share experiences and access information would greatly help patients. They would also benefit from sharing stories with fellow sufferers to provide guidance and emotional support.

3)    Lack of information and support

This uncertainty extends to their care and support. Many speak of their doctors being unable to provide sufficient information or reassurance on diagnosis, treatment, and prognosis. This further exacerbates mental health problems and leaves patients feeling unsupported and alone in managing their condition. For example, experiencing a symptom such as tightness of the chest can already be quite overwhelming, but not knowing how to deal with this or where to go to access support can further amplify feelings of fear.

Alice’s story, aged 30:

Patient X is a young girl of Asian descent. She has been experiencing many long COVID symptoms, especially fatigue. “I’ve just been feeling really really really worn out”. She speaks of struggling to do very simple tasks such as pulling out weeds in the garden which have left her exhausted. Her psychological symptoms include depression, which has had a drastic impact on her relationship with her partner moving out as a result. This lack of support has further exacerbated her depression, almost creating a toxic cycle that is hard to escape. She has also been experiencing heart palpitations and social anxiety in crowds, to the extent that she physically cannot move in social situations sometimes. This highlights the wide-ranging impact long COVID has on Patient X. She has tried to combat these symptoms by eating healthy and going for walks but is worried that this will worsen her fatigue and is also anxious about getting COVID-19 again. This has also made her anxious for the future. “I don’t know how long this is going to carry on for it means on at the end of my tether with it because of the uncertainty of this illness and I hope to God it doesn’t carry on”

Online information and awareness

  • Patients consistently expressed their desire for more information on Long COVID that could be accessed online or via their HCP. Facilitating peer-to-peer communications will help patients speak to each other, share their experiences and even crowdsource their symptoms and management

In summary, Long COVID is having a severe impact on patients, and they require much greater support and guidance. By harnessing the power of voice and video we can witness the extent to which these patients are suffering, often in silence. As a result, there is a huge need/opportunity for big pharma to provide treatment and support solutions.

Article by Dan Gallagher, Research Director and Nithasha Suganthan, Account Executive at Day One Strategy.

Research was completed in collaboration with Dave Kaye at Peek Content (user generated mobile content) and Frank Desbuquois at Medicys (medical recruitment experts).