COVID-19 interrupted care, well-being of rare disease patients in Europe
The first wave of COVID-19[female[feminine in Europe, has seriously disrupted access to care and increased stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey by Eurordis-Rare Diseases Europe.
“People living with rare diseases in Europe have found themselves caught as collateral damage from the COVID-19 pandemic, facing interruptions in their care that could put their lives at risk,” said Yann Le Cam, CEO of Eurordis-Rare Diseases Europe, in a press release. Press release. “The risk of exacerbating the inequalities that already exist for these patients is very real.
Eurordis, which stands for European Organization for Rare Diseases, is a non-profit, patient-led alliance of more than 930 rare disease patient organizations from 73 countries. Its aim is to improve the lives of people living with a rare disease in Europe.
The organization plans to share these results – which help to better understand the impact of the pandemic on the lives of people with a rare disease – and to offer practical solutions to decision-makers so that these patients are taken into account and protected. during the current second wave and beyond.
Eurordis had already issued a open letter to policymakers earlier this year by highlighting the impact of the pandemic on rare disease patients and providing a list of recommendations.
“The second wave of COVID-19 across Europe has made it clear that we will now be living with the pandemic for a long time,” Le Cam said, noting that “governments and health systems must move away from an approach to fighting fires, and working to build more sustainable and resilient health systems that do not forget the needs of the most vulnerable in the cloud of COVID-19. ”
“We need sustainable health systems that leave no one behind, including the 30 million people living with a rare disease in Europe,” he added.
It is well established that the COVID-19 outbreak and its associated temporary restrictions and blockages have affected many aspects of patient care, from in-person visits, to initiating and maintaining treatment, to surgeries.
However, there was little information on how the pandemic affected the lives of rare disease patients in particular.
To answer this question, Eurordis conducted a COVID-19 survey within his community by using his Rare Barometer Program, a survey tool created to systematically collect the opinions of patients and caregivers and include them in the political and decision-making process.
Conducted between April 18 and May 11, the survey assessed the impact of the first wave of COVID-19 on the treatment, care and well-being of nearly 7,000 patients with rare diseases or their caregivers (including 1,250 types of illness) in 36 European countries.
Results showed that 84% of respondents experienced some kind of disruption in care due to the COVID-19 crisis; 70 to 80% of them said that appointments or procedures such as physiotherapy were postponed or canceled.
In addition, more than half of these patients reporting interrupted care were unable to access diagnostic tests (60%), receive chemotherapy or infusions (60%), or undergo planned surgeries or transplants, which were postponed or canceled (60%).
For patients treated in hospitals or specialized units, care was particularly stressful and difficult to access, either due to fear of catching COVID-19 (47%), recommendations not to attend unless they were linked to COVID-19 (34%), or closed facilities (25%).
“As rare diseases are often very debilitating and fatal, this wait for diagnostic tests or medical interventions can lead to severe worsening of symptoms,” Eurordis said in the statement.
In agreement, 64% of respondents express concerns about the potential negative effects of these interruptions in care on their health or that of the person they care for, and 30% consider that this disturbance is probable (21%) or certain ( 9%) fatal.
In particular, interruptions of care and isolation linked to confinement had a severe impact on the mental health of patients, with nearly 60% of respondents declaring an interruption of psychiatry sessions and two-thirds having depression and / or feeling of being unable to overcome their problems since the start of the pandemic.
Half of the patients used telemedicine, which takes advantage of technologies such as computers, phones or smartphones to directly connect patients to a healthcare professional. These consultations were found to be helpful by 90% of patients, and 98% also found the email prescription helpful.
“The doctors, with whom I had an appointment, called me and clarified the current health situation with me on the phone then sent me the prescription to save me waiting time in the ward. consultation. I thought it was very good, ”said one survey participant.
Testimonials from patients and caregivers have shown additional support and help from medical professionals, in addition to their family, friends and neighbors during the pandemic.
“With health systems again strained under pressure from COVID-19 and the reintroduction of lockdowns across Europe, it is imperative that measures be taken to mitigate this impact,” Eurordis said in the statement. .
“We hope that the projects of European Health Union … Will work to meet the needs of people living with a rare disease during and after the pandemic. “
You will find more information on how to become part of the Eurordis patient and caregiver community and how to participate in its surveys and studies. here.