The partnerships helping patients isolated by Covid-19
More than half of people living with NCDs reported they felt isolated during the pandemic
And 50% thought their condition had worsened in lockdown
Partnerships are building bridges between isolated patients and their healthcare systems to improve their care.
Some people living with non-communicable diseases (NCDs) have reported that their consultations or surgeries have been postponed during the pandemic, they felt isolated and thought their condition had worsened.
Catherine Pécout, medical director at Viatris, worked with Eurocarers, La Compagnie des Aidants and a global digital platform for NCD patients called Carenity, to ask patients for their experiences through two survey waves. During the pandemic, Carenity’s more than 22,000 members were invited to share how they were coping with lockdowns, restrictions and reduced access to medical expertise. More than 4,800 of those people living with NCDs responded, with 54% saying that they felt very or completely socially isolated during lockdown and 50% that their condition had worsened.
One such patient is 39-year-old Cristina Serna Santos from Spain who was diagnosed with relapsing remitting multiple sclerosis (MS) 15 years ago. Before her diagnosis she enjoyed herself like many other people in their mid-20s, going out with friends and working in a fulfilling job.
Santos says she did her best to cope by herself, but one day her parents found her collapsed in her room. She says she had defecated on herself and was covered in ecchymosis – bruises on the surface of her skin. “Who knows what I did. I guess with the pandemic, the stress… I was so scared. I was wondering what was going on.”
Santos says that since the pandemic she has suffered from anxiety, insomnia and low self-esteem.
Unable to cope by herself, she decided to move back in with her parents. While the security of having people around her to help was a relief, she says it affected her self-esteem. Santos was used to living by herself.
Like Santos, many NCD patients have relied on their caregivers to find information in the absence of regular medical consultations. Through their partnership initiatives Viatris supports education to prevent and treat NCDs, raises awareness of the global burden of disease and generates scientific insights based on the perspectives of people living with NCDs and their caregivers to better support their needs.
“I think it is very important for healthcare professionals to be aware of what the patient thinks and wants because they will be able to connect much more with the patient,” says Pécout. “The fact that we take a closer look at the patient, at his or her experience, opens our eyes… Understanding them better means better care and ultimately better treatment for the patient.”
A number of Viatris’s partnerships aim to identify knowledge gaps to better inform how NCDs can be prevented and managed across the patient journey. Some seek to improve healthcare workers’ ability to diagnose, prevent and provide care, and others educate caregivers and patients on the resources available to them.
One such patient group is La Compagnie des Aidants, a French organisation that links caregivers to information about resources in their regions. “During the Covid-19 crisis, a lot of informal carers contacted us by email to ask for help,” says Claudie Kulak, founder of La Compagnie des Aidants. Normally, a caregiver might consult a healthcare professional on behalf of a patient, but with reduced access to services, they had to look elsewhere, says Kulak.
Lobna Salem, regional chief medical officer for developed markets, Japan, Australia and New Zealand at Viatris, says that the results of the survey are helping to inform the organisation's future partnerships. While the survey focused on the developed nations of the UK, US, France, Germany, Belgium, Italy and Spain, Salem says that there are lessons that can be applied elsewhere.
Western countries present interesting challenges, says Salem. “People live longer so they start to have complications like cardiovascular disease, they lose their cognitive ability – it's why we are proposing an agenda of healthy aging.” Lifespans in other regions will likely follow this example as more countries become developed. And patients do not always adhere to the medication even when it is readily available, as it is in Europe, she adds, which can undo the work of healthcare partnerships.
Salem says that while each country represented in the survey took varying approaches to lockdown, what they all have in common is that restrictions lasted for an “extended period of time”. Some countries had tighter restrictions in wave one and less extreme restrictions in wave two, and vice-versa. But because the survey was conducted twice at two different time periods, there is a good chance it captured a range of conditions, she says.
The survey relied on self-reporting, which can be “subjective – it's emotional,” says Salem. “You're already talking to motivated patients. There are a lot of people living with NCDs either undiagnosed or diagnosed, but they are totally not engaged, and might have even worse experiences.” Those patients' views will be missing from the data, which is why she says it’s important that patients’ views are gathered by other means on a regular basis.
While organisations like La Compagnie des Aidants travel to meet carers face to face, they also make resources available online. Santos says she has found online patient communities helpful when she felt most isolated. “Groups on the internet, with people suffering from the same disease as me, of course help a lot. It is wonderful to be with people who understand you,” she says.
For example, Our Views, Our Voices is an online platform where people living with NCDs are consulted on a broad number of challenges and asked for the improvements they would make. They are also consulted on solutions to their challenges, to ensure they are involved in future decision-making.
Partnerships like this help to bridge the gap between patients and their healthcare systems. Salem says that the healthcare sector has to continue to keep people living with NCDs at the centre of their research and development, and to keep listening to their thoughts and concerns.
Santos is grateful that she could rely on online communities for support, and her family for care. She says that without anyone to listen to her, the pandemic could have been much more challenging. “It was horrible for me,” concludes Santos, of the isolation she felt in lockdown. “I believe it was the same for a lot of people, but with the disease it was perhaps worse.”