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Patients’ perception on the quality of care for multiple endocrine neoplasia disorders in Europe: an online survey from a patient support group

Abstract

Purpose

European Patient Advocacy Groups (ePAGs) within the Endo-ERN identified a lack of knowledge about quality of care (QoC) of patients with multiple endocrine neoplasia (MEN). The aim of this study was to identify inequalities in care and to encourage improvements.

Methods

The European MEN Alliance (EMENA) developed and conducted a survey, using the European Commissions’ EUSurvey platform. Patient groups and healthcare professionals (HCPs) distributed the survey.

Results

A total of 288 participants completed the survey (MEN1 n = 203, MEN2 n = 67, MEN3 n = 18) from 18 European countries. The majority of respondents were recruited via patient groups (58%), aged between 41 and 60 years (53%) and were female (67%). All participants reported having been diagnosed on average 5.58 years (95%-CI: 4.45–6.60) after first symptoms occurred. This timeframe was lower in the group with MEN2 (2.97 years, 95%-CI: 1.37–4.57). Most of the participants (67%) received their diagnosis by a positive gene test after presenting with one or more MEN-related tumours. Overall QoC was rated as either “good” (43%) or “excellent” (36%).

Conclusion

The results of this unique Europe-wide, patient-driven survey on QoC of patients with MEN show that ratings for overall QoC were lower than ratings for different aspects of care. This may be because of the complex nature of care for genetic syndromes. Furthermore, patients who connect with patient groups may be deemed “expert patients” whose answers are not representative of the overall MEN patient community. We hope that Endo-ERN can support further education and training for HCPs based on these results.

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Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Acknowledgements

The authors would like to thank the European Commission for the EUSurvey platform used. The authors kindly acknowledge the support of EMENA’s Medical Advisory Board, particularly Paul Newey (Dundee, UK), Rajesh Thakker (Oxford, UK) and Gerlof Valk (Utrecht, The Netherlands). Furthermore, the authors highly appreciate the support of Endo-ERN co-chairs Alberto Pereira (Leiden, The Netherlands) and Olaf Hiort (Lübeck, Germany).

Funding

EURORDIS - Rare Diseases Europe (Paris, France) partially funded the project’s initial planning meeting.

Author information

Affiliations

Authors

Contributions

K.P.D. performed data analysis, interpreted the results and wrote the manuscript. P.B., J.G. and L.S. contributed to the interpretation of the results and to writing the manuscript. K.P.D., P.B., J.G., J.P., M.S., M.A., D.v.G. and L.S. had the idea for the project and designed the questionnaire. J.P. and M.-L.B. contributed to interpreting the results and writing the manuscript. All authors reviewed the manuscript and approved it for submission.

Corresponding author

Correspondence to Karl Philipp Drewitz.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest. J.G. and P.B. are European Patient Advocacy Group patient representatives and co-chairs of the main thematic group (MTG) 4 (Genetic Endocrine Tumour Syndromes) of the European Reference Network on Rare Endocrine Conditions (Endo-ERN).

Ethics statement

The multinational umbrella group, European Multiple Endocrine Neoplasia Alliance (EMENA), planned and executed this study as a collaborative way for the various patient groups (EMENA members) to assess patients’ perspectives on quality of care rather than as an academic or medical research study. The authors therefore did not seek ethics approvals. The authors did not collect personal data of participants that would allow them to identify participants despite their topic being about rare diseases. All participants were asked for their consent to publish the results of the survey. The data collection covers 18 out of the 28 EU member states primarily due to the lack of participatory patient representation in some countries. The authors collected anonymized data thus complying with EU General Data Protection Regulations.

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Drewitz, K.P., Grey, J., Brügmann, P. et al. Patients’ perception on the quality of care for multiple endocrine neoplasia disorders in Europe: an online survey from a patient support group. Endocrine 71, 634–640 (2021). https://doi.org/10.1007/s12020-021-02637-w

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Keywords

  • Multiple endocrine neoplasia
  • Quality of care
  • Patient report
  • Endocrine tumours
  • Rare diseases