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

Violeta Iotova; Camilla Schalin-Jäntti; Petra Bruegmann; Manuela Broesamle; Johan De Graaf; Natasa Bratina; Vallo Tillmann; Alberto M. Pereira; Olaf Hiort

doi:10.1007/s12020-021-02654-9

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

Violeta Iotova^*, Camilla Schalin-Jäntti, Petra Bruegmann, Manuela Broesamle, Johan De Graaf, Natasa Bratina, Vallo Tillmann, Alberto M. Pereira, Olaf Hiort

^*Corresponding author for this work

Clinic of Pediatric and Adolescent Medicine

6 Citations (Scopus)

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/>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.

Original language	English
Journal	Endocrine
Volume	71
Issue number	3
Pages (from-to)	542-548
Number of pages	7
ISSN	1355-008X
DOIs	https://doi.org/10.1007/s12020-021-02654-9
Publication status	Published - 03.2021

Research Areas and Centers

Academic Focus: Center for Brain, Behavior and Metabolism (CBBM)

DFG Research Classification Scheme

2.22-17 Endocrinology, Diabetology, Metabolism
2.22-20 Pediatric and Adolescent Medicine

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1007/s12020-021-02654-9

Cite this

@article{393f53ca40374fe3aad7dd88227a056c,

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

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/>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.",

author = "Violeta Iotova and Camilla Schalin-J{\"a}ntti and Petra Bruegmann and Manuela Broesamle and \{De Graaf\}, Johan and Natasa Bratina and Vallo Tillmann and Pereira, \{Alberto M.\} and Olaf Hiort",

year = "2021",

month = mar,

doi = "10.1007/s12020-021-02654-9",

language = "English",

volume = "71",

pages = "542--548",

journal = "Endocrine",

issn = "1355-008X",

publisher = "Springer",

number = "3",

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TY - JOUR

T1 - Access to patient oriented information—a baseline Endo-ERN survey among patients with rare endocrine disorders

AU - Iotova, Violeta

AU - Schalin-Jäntti, Camilla

AU - Bruegmann, Petra

AU - Broesamle, Manuela

AU - De Graaf, Johan

AU - Bratina, Natasa

AU - Tillmann, Vallo

AU - Pereira, Alberto M.

AU - Hiort, Olaf

PY - 2021/3

Y1 - 2021/3

N2 - 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.

AB - 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.

UR - https://www.scopus.com/pages/publications/85101262082

UR - https://www.mendeley.com/catalogue/cda5f7c5-872f-3fa2-b8b5-26890e886fd1/

U2 - 10.1007/s12020-021-02654-9

DO - 10.1007/s12020-021-02654-9

M3 - Journal articles

C2 - 33599944

AN - SCOPUS:85101262082

SN - 1355-008X

VL - 71

SP - 542

EP - 548

JO - Endocrine

JF - Endocrine

IS - 3

ER -

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

Abstract

Research Areas and Centers

DFG Research Classification Scheme

UN SDGs

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SFB 1665: Sexdiversity - Determinants, meanings and implications of sex diversity in sociocultural, medical and biological landscapes

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

Abstract

Research Areas and Centers

DFG Research Classification Scheme

UN SDGs

Access to Document

Other files and links

Fingerprint

Projects

SFB 1665: Sexdiversity - Determinants, meanings and implications of sex diversity in sociocultural, medical and biological landscapes

Cite this