Periodic Reporting for period 1 - ETUDE (Encompassing Training in fUnctional Disorders across Europe)
Reporting period: 2021-01-01 to 2022-12-31
Functional Disorders (FD) are clusters of chronic somatic symptoms that currently cannot be associated to reproducibly observable pathophysiological mechanisms. A Dutch study showed FD to be the second most expensive health care problem, after dementia, responsible for 4.4% of the total health care costs. Thereby clearly showing that FD clearly contribute to the main healthcare challenge Europe is facing: the rising and potentially unsustainable health and care costs. FD occur frequently: in many medical specialties, FD outnumber the chronic physical diseases. However, etiological concepts are still unresolved and differ between medical specialties having important consequences for patients. Given the high prevalence and associated burden, a shared understanding and better conceptualization of FD is urgently needed in order to optimize clinical management.
These challenges result in a lack of knowledge on FD, leading to fragmented and insufficient health care for patients with FD, and a society in which patients with FD experience stigma from both the society as well as from health care professionals. There is an urgent need to solve the fragmented and insufficient education and research landscape. For this reason EURONET-SOMA has envisioned ETUDE: a sustainable and structure training programme that educates a new generation of interdisciplinary creative early stage researchers (ESR) that are able to cross disciplines and to translate theory and experimental models to products and services that improve care for patients.
Through intense collaboration, our network aims to achieve substantial breakthroughs in the field of FD, with the following targets:
• Scientific target: to develop knowledge on mechanisms underlying FD to come to new diagnostic methods, more effective patient-centred treatments, and reduced stigma and burden associated with FD;
• Training target: to train 15 fellows in multidisciplinary skills and in the translation from theoretical insights to practical products and services;
• Industry involvement target: to strengthen the collaboration between academic and non-academic partners, and to allow the industrial beneficiaries to incorporate the newest scientific insights into their products to improve diagnosis or treatment of FD.
ETUDE unites the efforts of an interdisciplinary and dynamic network of different European research groups in close collaboration with relevant industrial and other non-academic partners. We have teamed up a consortium of 15 non-academic partners and 15 partners for academia. Together, we will tackle the above mentioned challenges associated with FD with a total of 15 ESRs. The fellows will receive a comprehensive interdisciplinary gold standard training through local measures, and network-wide activities on various topics. Each ESR will do at least one secondment to another academic partner and one secondment to a non-academic partner. This ensures that all fellows can develop vital expertise to work inside and outside academia.
These challenges result in a lack of knowledge on FD, leading to fragmented and insufficient health care for patients with FD, and a society in which patients with FD experience stigma from both the society as well as from health care professionals. There is an urgent need to solve the fragmented and insufficient education and research landscape. For this reason EURONET-SOMA has envisioned ETUDE: a sustainable and structure training programme that educates a new generation of interdisciplinary creative early stage researchers (ESR) that are able to cross disciplines and to translate theory and experimental models to products and services that improve care for patients.
Through intense collaboration, our network aims to achieve substantial breakthroughs in the field of FD, with the following targets:
• Scientific target: to develop knowledge on mechanisms underlying FD to come to new diagnostic methods, more effective patient-centred treatments, and reduced stigma and burden associated with FD;
• Training target: to train 15 fellows in multidisciplinary skills and in the translation from theoretical insights to practical products and services;
• Industry involvement target: to strengthen the collaboration between academic and non-academic partners, and to allow the industrial beneficiaries to incorporate the newest scientific insights into their products to improve diagnosis or treatment of FD.
ETUDE unites the efforts of an interdisciplinary and dynamic network of different European research groups in close collaboration with relevant industrial and other non-academic partners. We have teamed up a consortium of 15 non-academic partners and 15 partners for academia. Together, we will tackle the above mentioned challenges associated with FD with a total of 15 ESRs. The fellows will receive a comprehensive interdisciplinary gold standard training through local measures, and network-wide activities on various topics. Each ESR will do at least one secondment to another academic partner and one secondment to a non-academic partner. This ensures that all fellows can develop vital expertise to work inside and outside academia.
In work package 2, which focuses on mechanisms, ESR1 did an assessment of different facets of how the body perceives its internal state as well as emotion regulation using a data interpretation framework called signal-detection theory. These studies focused on participants at risk or with full-blown FD. ESR2 performed experiments to study sensory-motor processing in different FD patients, the results of these experiments will contribute to a computational framework that can inform how sensorimotor processing is affected in FD. ESR3 focused on dysfunctional breathing processes as a transdiagnostic mechanism in FD. ESR4 performed the first encompassing study on the developmental trajectories of FD from preschool to adolescence, their health outcomes and the potential role of family factors.
Work package 3 focuses on the diagnosis of FD. ESR4 showed empirical support that the bodily distress syndrome concept can be used to screen for functional somatic symptoms in adolescence. ESR5 has been focusing on relevant psychological factors for the diagnoses of somatic symptom disorder. ESR6 is studying the predictors and consequences of receiving a diagnostic label of FD. The studies of ESR7, so far, have explored the morbidity rates, characteristics and management of patients with persistent symptom diagnoses.
In work package 4, in which treatment of FD plays a central role, cross-European surveys were developed that target healthcare professionals treating FD as well as FD patients. The project of ESR8 focusses on providing a transdiagnostic overview on the prevalence of FD and its effective treatments used in different medical disciplines. ESR9 researched healthcare related factors associated with persistent symptoms. ESR10 & ESR11 both conducted reviews to lay the foundation for the development of eHealth prototypes that can offer guidance to FD patients. ESR12 is discerning the procedural and structural characteristics of collaborative care networks in Europe.
Work package 5 focuses on stigma concerning FD. ESR13 has reviewed questionnaire measurement instruments to assess stigma among healthcare professionals, ESR14 is currently developing a framework to understand stigmatisation in medical consultations for persistent physical symptoms, and the first study of ESR15 aimed to systematically search and review the literature on stigma in Functional Neurological Disorders (FND), with particular focus on the prevalence of stigma in different contexts.
Work package 3 focuses on the diagnosis of FD. ESR4 showed empirical support that the bodily distress syndrome concept can be used to screen for functional somatic symptoms in adolescence. ESR5 has been focusing on relevant psychological factors for the diagnoses of somatic symptom disorder. ESR6 is studying the predictors and consequences of receiving a diagnostic label of FD. The studies of ESR7, so far, have explored the morbidity rates, characteristics and management of patients with persistent symptom diagnoses.
In work package 4, in which treatment of FD plays a central role, cross-European surveys were developed that target healthcare professionals treating FD as well as FD patients. The project of ESR8 focusses on providing a transdiagnostic overview on the prevalence of FD and its effective treatments used in different medical disciplines. ESR9 researched healthcare related factors associated with persistent symptoms. ESR10 & ESR11 both conducted reviews to lay the foundation for the development of eHealth prototypes that can offer guidance to FD patients. ESR12 is discerning the procedural and structural characteristics of collaborative care networks in Europe.
Work package 5 focuses on stigma concerning FD. ESR13 has reviewed questionnaire measurement instruments to assess stigma among healthcare professionals, ESR14 is currently developing a framework to understand stigmatisation in medical consultations for persistent physical symptoms, and the first study of ESR15 aimed to systematically search and review the literature on stigma in Functional Neurological Disorders (FND), with particular focus on the prevalence of stigma in different contexts.
In work package 2 the ESRs focus on studying the etiological mechanisms of FD. At the end of ETUDE it is expected that this work package will result in the development of concepts of novel experimental treatments based on symptom perception insights, a new diagnostic tool based on sensory-motor processing models, diagnostic tools and treatment options based on dysfunctional breathing patterns, and insight into the developmental course of FD from childhood to adulthood.
The ESR involved in work package 3 test the current diagnostic criteria for FD in different health care settings. By developing a subset of the most valid and predictive diagnostic criteria an evidence-based diagnostic classification system will be created. Based on this, recommendations for future diagnostic criteria will be written for different health care systems.
Work package 4 aims to develop recommendations on treatment and health care for patients with FD that can be used across Europe. More specifically, the expected results of this work package are reports concerning the prevalence of FD and effective treatments used in different medical disciplines, recommendations for health care systems to prevent symptom persistence, personalized eHealth self-help programmes for the treatment of cognitive FD, and a toolbox to develop FD collaborative care networks.
Finally, the ESRs involved in work package 5 aim to develop online materials and trainings to counter stigma and negative health care interactions regarding FD with patients, health care professionals and the general public.
The ESR involved in work package 3 test the current diagnostic criteria for FD in different health care settings. By developing a subset of the most valid and predictive diagnostic criteria an evidence-based diagnostic classification system will be created. Based on this, recommendations for future diagnostic criteria will be written for different health care systems.
Work package 4 aims to develop recommendations on treatment and health care for patients with FD that can be used across Europe. More specifically, the expected results of this work package are reports concerning the prevalence of FD and effective treatments used in different medical disciplines, recommendations for health care systems to prevent symptom persistence, personalized eHealth self-help programmes for the treatment of cognitive FD, and a toolbox to develop FD collaborative care networks.
Finally, the ESRs involved in work package 5 aim to develop online materials and trainings to counter stigma and negative health care interactions regarding FD with patients, health care professionals and the general public.