Dear ERKNet members, partners and friends,

ERKNet in collaboration with the Eurodis three other ERNs conducted a pilot H-CARE Survey aimed at determining patient experience and satisfaction with their care within ERNs. The survey that included a modified version of the PACIC (Patient Assessment of Care for Chronic Conditions) questionnaire was disseminated online and on-site to patients with rare kidney disorders treated in ERKNet and non-ERKNet Health Care Professionals.

A total of 142 respondents from ERKNet and 154 from other HCPs responded to the survey (see map below). The results clearly indicate better patient experience and satisfaction when receiving care in ERKNet centers.

In summary, patients who were under the care of ERKNet had:

  • Significantly shorter time to diagnosis (2.8 vs 4.9 years)
  • Significantly better experience with their care
  • Significantly better satisfaction with their care

This pilot survey not only provided the first patient-reported evidence about the benefits of care within ERNs but also confirmed H-CARE Survey as a valuable and feasible Common Feedback Mechanism for regular ERN monitoring.

We would like to thank all ERKNet members for contributing to these exciting achievements by the excellence in the care delivered to patients with rare kidney disorders!