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

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http://hdl.handle.net/10138/328829

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Iotova , V , Schalin-Jäntti , C , Bruegmann , P , Broesamle , M , De Graaf , J , Bratina , N , Tillmann , V , Pereira , A M & Hiort , O 2021 , ' Access to patient oriented information-a baseline Endo-ERN survey among patients with rare endocrine disorders ' , Endocrine , vol. 71 , no. 3 , pp. 542-548 . https://doi.org/10.1007/s12020-021-02654-9

Title: Access to patient oriented information-a baseline Endo-ERN survey among patients with rare endocrine disorders
Author: Iotova, Violeta; Schalin-Jäntti, Camilla; Bruegmann, Petra; Broesamle, Manuela; De Graaf, Johan; Bratina, Natasa; Tillmann, Vallo; Pereira, Alberto M.; Hiort, Olaf
Contributor: University of Helsinki, HUS Abdominal Center
Date: 2021-03
Number of pages: 7
Belongs to series: Endocrine
ISSN: 1355-008X
URI: http://hdl.handle.net/10138/328829
Abstract: 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 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) 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.
Subject: Education
Patients
Parents
caregivers
European patient advocacy group
Rare endocrine disease
Endo-ERN
3121 Internal medicine
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