Eurordis Survey Finds People with Rare Diseases Have Concerns with Quality of Healthcare Experience

Rare Daily Staff

People with rare diseases in Europe give their healthcare experience a medium-low rating, according to a new report from Eurordis.

The Rare Barometer survey was based on more than 3,900 submissions received through the 2019-2020 H-CARE survey. It outlines major gaps in healthcare delivery and provides recommendations for future reform.

Healthcare services for rare and complex conditions only occasionally consider key aspects, such as follow-up consultations and appropriate psychological and social support, the survey found. Moreover, the results show that patients living with a rare disease have a worse healthcare experience than other patients affected by chronic diseases. While both require multidisciplinary care and have broadly similar needs, patients with rare diseases seem to have a harder time accessing care that meets their needs.

Many people living with a rare disease report feeling left alone with their concerns. Orienting patients towards community support groups, alongside adequate psychological and emotional help, emerges as a key factor in ensuring a better healthcare experience. Among the three priority areas for improvement, the respondents indicated the need for follow-up consultations, more orientation on resources and support, and psychological assistance.

In order to support patients and caregivers, experts should also improve coordination with other doctors and provide recommendations to patients on how to manage the disease in their daily life, for instance by setting specific goals or developing disease management programs, the report said.

The survey was also used to assess the experience of health care received in Centers of Expertise belonging to four European Reference Networks (ERN LUNG, GENTURIS, ErkNet, and eUROGEN). The results showed that patients treated in these centers had a better healthcare experience compared to those treated in other non-expert centers. Despite the higher score, areas for improvement for Centers of Expertise that belong to an ERN remain the same as for other non-expert centers.

“The results of this survey confirm that there is still work to be done to improve the healthcare experience of people living with a rare or complex condition, from providing appropriate psychological support and ensuring better care coordination to signposting to support groups,” said Inés Hernando, ERN and healthcare director for Eurordis. “We invite healthcare providers, clinicians and hospital managers, and health and social care authorities to analyze the results, extract lessons, and use them to inform future service redesign and policy interventions.”

To improve the healthcare experience of people living with a rare or complex condition, Eurordis recommended providers increase focus on follow-up after consultations, psychological support, and healthcare aspects that allow patients to manage their health in their daily life.

The organization also called for improved access to high-quality specialized care for people living with a rare or complex condition.

And the organization said developing and implementing a questionnaire to measure the healthcare experience of patients living with a rare disease and their caregivers could contribute to setting quality standards for health care in rare and complex conditions.