Survey Finds COVID-19 Disrupted Care, Well-being of Rare Disease Patients in Europe

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe.

“People living with rare diseases in Europe have found themselves caught as collateral damage of the COVID-19 pandemic, facing interruptions to their care that could be life-threatening,” Yann Le Cam, CEO of Eurordis-Rare Diseases Europe, said in a press release. “The risk of exacerbating inequalities that already exist for these patients is very real.”

Eurordis, which stands for the European Organization for Rare Diseases, is a nonprofit, patient-driven alliance of more than 930 rare disease patient organizations from 73 countries. Its goal is to improve the lives of people living with a rare disease in Europe.

The organization plans to share these findings — which help to better understand the pandemic’s impact on the lives of those with a rare disease — and propose 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 an open letter to policymakers earlier this year 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 we will now be living with the pandemic for a long period,” Le Cam said, noting that “governments and healthcare systems have to move away from a fire-fighting approach, and work towards building more sustainable and resilient healthcare systems that do not forget the needs of the most vulnerable in the cloud of COVID-19.”

“We need sustainable healthcare 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 restrictions and temporary lockdowns affected many aspects of patient care, from in-person visits to treatment initiation and maintenance, and surgeries.

However, there was limited information on how the pandemic affected the lives of rare disease patients in particular.

To address this question, Eurordis conducted a COVID-19 survey within its community using its Rare Barometer Program, a survey tool created to systematically collect patient and caregiver opinions and include them in the policy and decision-making process.

Conducted between April 18 and May 11, the survey assessed the impact of the first COVID-19 wave on the treatment, care, and well-being of nearly 7,000 rare disease patients or their caregivers (comprising 1,250 disease types) across 36 European countries.

Results showed that 84% of respondents experienced some sort of disruption of care due to the COVID-19 crisis; 70–80% of them reported that appointments or interventions such as physiotherapy were postponed or canceled.

In addition, more than half of these patients reporting disrupted care were unable to access diagnostic tests (60%), receive chemotherapies or infusions (60%), or undergo scheduled 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, due to either fear of catching COVID-19 (47%), recommendations against attendance unless it was COVID-19-related (34%), or closed facilities (25%).

“As rare diseases are often highly debilitating and life-threatening, this wait for diagnostic tests or for medical interventions can result in a severe deterioration of symptoms,” Eurordis stated in the release.

In agreement, 64% of respondents expressed concerns about the potential negative effects of these interruptions of care on their health or that of the person they care for, and 30% considered this disruption to be probably (21%) or definitely (9%) life-threatening.

Notably, care disruptions and lockdown-related isolation had a severe impact on patients’ mental health, with almost 60% of respondents reporting an interruption in psychiatry sessions and two-thirds having depression and/or a feeling of being unable to overcome their problems since the beginning of the pandemic.

Half of the patients used telemedicine — which takes advantage of technology such as computers, telephones, or smartphones to connect patients directly with a healthcare professional. These consultations were considered useful by 90% of patients, and 98% also found prescription via email useful.

“The doctors, with whom I had appointments, called me and clarified the current health situation with me on the phone and then sent me the prescription to save me the waiting time in the consulting room. I thought that was very good,” one survey participant said.

Testimonials from patients and caregivers reported additional support and help from healthcare professionals, in addition to their family, friends, and neighbors during the pandemic.

“With healthcare systems once again strained under the pressure of COVID-19 and the reintroduction of lockdowns across Europe, it is imperative that measures are taken to mitigate such impact,” Eurordis said in the release.

“We hope that plans towards a European Health Union … will work to address the needs of people living with a rare disease during and after the pandemic.”

More information on how to be part of Eurordis’ patient and caregiver community and participate in its surveys and studies can be found here.