Access to patient oriented information—a baseline Endo-ERN survey among patients with rare endocrine disorders

Aim: To perform a baseline survey on condition-specific information access among patients/parents/caregivers with rare endocrine disorders (RD) in Europe. Methods: Electronic invitation to participate in a survey (19 questions) was sent to 120 patient advocacy groups (PAGs), and further distributed to 32 European countries. Results: A total of 1138 respondents from 22 countries (74% women), aged between 1 year (parents) and 70 years, participated. The Netherlands, France, Germany, Italy and France had highest participation rates. All Main Thematic Groups (MTGs) were represented; the adrenal (32%), pituitary (26%) and thyroid (22%) were the most common. The majority of the respondents got information from their endocrinologist (75%), PAGs (37%) and expert reference centre (22%); 95% received information in their mother tongue. Leaflets (70%), infographics (65%), webinars (60%) and Internet films (55%) were preferred ways of learning. Respondents relied mostly on materials by PAGs and alliances (79%), rather than from specific international RD sites (15%). Fifty-six percent used Facebook, and 37% other social media, with a significant age difference (<40/>40 years) among non-users, 19% vs. 36%, p < 0.0001. Of all, 685 answered questions on informational materials for children−79% wanted materials that can be used by the children themselves. There was significant age difference (<40 years/>40 years) in the willingness to help create new educational materials; 49% vs. 34%, p < 0.001. Conclusions: Our current patient information access survey provides a sound basis for further planning and execution of educational and teaching activities by Endo-ERN.