Karl Philipp Drewitz1,2,3, Jo Grey4,5,6, Petra Brügmann4,7,6, Josef Pichl4,7, Martina Sammarco4,8, Monique Aarts4,9, Dirk van Genechten4,10, Maria-Luisa Brandi4,11,12, Ludwig Schaaf4,13. 1. European Multiple Endocrine Neoplasia Alliance (EMENA), Munich, Germany. Karl-Philipp.Drewitz@med.ovgu.de. 2. Institute of Social Medicine and Health Systems Research, Otto von Guericke University Magdeburg, Magdeburg, Germany. Karl-Philipp.Drewitz@med.ovgu.de. 3. German Network of Pituitary and Adrenal Diseases, Fürth, Germany. Karl-Philipp.Drewitz@med.ovgu.de. 4. European Multiple Endocrine Neoplasia Alliance (EMENA), Munich, Germany. 5. Association for Multiple Endocrine Neoplasia Disorders (AMEND), Kent, UK. 6. European Patient Advocacy Group (ePAG), Main Thematic Group 4 (Genetic Endocrine Tumour Syndromes), European Reference Network on Rare Endocrine Conditions (Endo-ERN), Leiden, The Netherlands. 7. German Network of Pituitary and Adrenal Diseases, Fürth, Germany. 8. Associazione Italiana Neoplasie Endocrine Multiple di tipo 1 e 2 (AIMEN 1 e 2), Torino, Italy. 9. Belangengroep MEN, Utrecht, The Netherlands. 10. vzw NET & MEN Kanker, Blankenberge, Belgium. 11. Donatello Bone Clinic, Florence, Italy. 12. Endo-ERN Reference Center, University Hospital Careggi, Florence, Italy. 13. Department of Endocrinology, München Klinik Schwabing, Munich, Germany.
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.
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 MENpatient community. We hope that Endo-ERN can support further education and training for HCPs based on these results.
Authors: S C Chandrasekharappa; S C Guru; P Manickam; S E Olufemi; F S Collins; M R Emmert-Buck; L V Debelenko; Z Zhuang; I A Lubensky; L A Liotta; J S Crabtree; Y Wang; B A Roe; J Weisemann; M S Boguski; S K Agarwal; M B Kester; Y S Kim; C Heppner; Q Dong; A M Spiegel; A L Burns; S J Marx Journal: Science Date: 1997-04-18 Impact factor: 47.728
Authors: Joanne M de Laat; Rob B van der Luijt; Carolina R C Pieterman; Maria P Oostveen; Ad R Hermus; Olaf M Dekkers; Wouter W de Herder; Anouk N van der Horst-Schrivers; Madeleine L Drent; Peter H Bisschop; Bas Havekes; Menno R Vriens; Gerlof D Valk Journal: BMC Med Date: 2016-11-15 Impact factor: 8.775