Research

Overview of the ETUDE work packages

The research programme of ETUDE is organized in four scientific Work Packages (WP).

Work Package 1: Mechanisms underlying the development of Functional Disorders

WP1 aims to examine which mechanisms may lead to the development of Functional Disorders (FD). Within this theme, four Early Stage Researchers (ESRs) aim to gain new insights into transdiagnostic mechanisms, which will inform new diagnostic methods or products and identify treatment targets.

ESR: Tara Marlena Petzke, Master of Science in Psychology

Supervisor/Center: Prof. Michael Witthöft, Department of Clinical Psychology, Psychotherapy, and Experimental Psychopathology, Johannes Gutenberg-University, Mainz, Germany

Project team on site: Dr. Anne-Kathrin Bräscher, Prof. Dr. Stefanie Jungmann, Dr. Timo Klan, Dr. Severin Hennemann

Cooperation partners (secondments): Prof. Dr. Nadine Lehnen, Head of the Neuropsychosomatic of Somatic Symptoms Research Group, Department of Psychosomatic Medicine and Psychotherapy, Technische Universität München


Symptom perception as a transdiagnostic mechanism underlying FD

Background 

Symptom perception can best be understood within the general framework of predictive processing (e.g. Clark, 2013; Pezzulo et al., 2015, Van den Bergh et al., 2017). Trait negative affect is hypothesized to contribute to less detailed sensory-perceptual processing fostering imprecise somatic prediction errors and an overreliance of perception on precise symptom priors (Bräscher et al., 2020; Van den Bergh et al., 2017; Wolters et al., 2021). Based on the notion that high levels of trait negative affect might stem from emotion regulation dysfunctions, actively improving emotion regulation (via special trainings) should not only result in lower trait negative affect but also in a more detailed sensory processing style thereby fostering a reduction of chronic somatic symptom distress.

Objectives

  • Testing whether somatic symptom distress and related constructs are significantly associated with alterations in facets of interoceptive information processing; identifying the most relevant components of altered interoceptive information processing

H1: Somatic symptom distress is significantly positively associated with less accurate and more biased (cardiac) interoceptive information processing.

  • Testing whether somatic symptom distress and related constructs are significantly associated with alterations in facets of emotion regulation; identifying the most relevant components of altered emotion regulation.

H2: Somatic symptom distress is significantly positively associated with less functional (e.g. appraisal) and more dysfunctional (e.g. suppression) emotion regulation strategies.

H3: Somatic symptom distress is significantly associated with a less flexible emotion regulation style in light of varying intensities of negative stimulation.

  • Testing causal effects of key alterations in interoception on somatic symptom perception by using experimental trainings

H4: Enhancing interoceptive accuracy and decreasing interoceptive response biases will significantly reduce somatic symptom distress levels.

  • Testing causal effects of key alterations in emotion regulation on somatic symptom perception by using experimental trainings.

H5: Enhancing functional emotion regulation and emotion regulatory flexibility will significantly reduce somatic symptom distress levels.

Design

Study 1: Large-scale multimethod correlational study (n ≥ 250) with persons from the general population; use of multiple experimental and questionnaire-based measures to assess facets of somatic symptom distress (according to the HiTOP framework) as well as facets of (cardiac) interoception and emotion regulation. Analysis via SEM, correlational analyses and multiple regressions.

Study 2: Experimental pre-post-intervention study with elevated somatic symptom reporters from study 1. The interventions will consist of short (1-session) laboratory training tasks to improve alterations regarding interoception and emotion regulation observed in Study 1. Analysis via paired-sample t tests for primary outcomes, correlational analyses, multiple regression, as well as ANOVA/ANCOVA.

Preregistrations

Study 1: osf.io/43pr9 (embargoed)

Study 2: TBD after Study 1.

Expected results

  1. Detailed information on possible alterations in interoceptive processes as potential mechanisms underlying somatic symptom distress in FD
  2. Detailed information on possible alterations in emotional processing as potential mechanisms underlying somatic symptom distress in FD
  3. Finding novel experimental treatments (training protocols) to lower somatic symptom distress in persons at risk for FD

 

 
Planned secondments

 

  • ELTE, Budapest (Supervisor: Prof. Ferenc Köteles), 3 months (09.22-11.22), gaining expertise in research into experimental approaches relevant to FD
  • TUM-Med, Munich (Supervisor: Prof. Nadine Lehnen), 3 months (05.23-07.23), gaining expertise in computational approaches relevant to FD
  • TUMI, Leuven (Supervisor: Prof. Katleen Bogaerts), 4 months (10.23-02.24), acquiring knowledge about translation from scientific results to clinical services

 

 
 

ESR: Franziska Regnath, M.Sc. psychology

Supervisor/Center: Prof. Nadine Lehnen, Department of Psychosomatic Medicine and Psychotherapy, Klinikum rechts der Isar, Technical University Munich, Munich, Germany

 

Project team on site: Lena Schröder, Dina von Werder, Dr. med. Katharina Biersack

 

Cooperation partners (secondments): 

Prof. Giovanni Pezzulo, Research Director, Institute of Cognitive Sciences and Technologies, Rome, Italy

Prof. Erich Schneider, Chief Executive Officer, EyeSeeTec GmbH, Munich, Germany

Prof. Michael Witthöft, Department of Clinical Psychology, Psychotherapy, and Experimental Psychopathology, Johannes Gutenberg-University, Mainz, Germany

 

Sensory-motor processing as a transdiagnostic mechanism underlying Functional Disorders (FD)

 

Background/Rationale

We investigate erroneous sensory-motor processing in the central nervous system as a (potentially unifying) pathophysiological mechanism in FD. The idea behind this is based on the predictive processing model of brain function, which proposes that our brain constantly generates predictions about what will happen in our body and the outside world. That is, instead of passively waiting for input, our brain prepares the mind and body to effectively navigate within an ever-changing environment. In FD, the brain seems to rely on incorrect predictions to prepare for sensory input and to explain the incoming information. This mismatch between the internal expectations and the actual sensory input can bias perception, and this could explain why patients with FD experience persistent somatic symptoms.

Objectives/Hypotheses

The purpose of the current research project is to test whether there is a trans-diagnostic mechanism underlying FD, characterized by erroneous sensory-motor processing in the brain. We will approach this question by studying two patient groups with FD: patients with functional dizziness (somatoform dizziness, ICD-10 F45.8) and patients with functional movement disorder (dissociative disorder with motor symptom or deficit, ICD-10 F44.4). Together with computational modelling, we will investigate whether sensory-motor processing is similarly affected in both patient groups and use a refined (computational) model to describe the underlying mechanism(s). Furthermore, the results could identify measurable positive markers for the development of a diagnostic tool for FD and would help to guide (trans-)diagnostic and therapeutic processes in the future.

Understanding the mechanism underlying functional dizziness as well as functional movement disorders will contribute to the overall ETUDE objective of identifying a – possibly unifying – positive pathophysiological definition of FD. This will help to educate patients, clinicians and the public and to reduce stigma, another overall objective of ETUDE.

Design

This research project makes use of an established paradigm based on combined eye-head gaze shifts measured in an experimental situation before, during, and after an increase of the head moment of inertia in individuals with functional dizziness or functional movement disorder. This experimental setup allows us to examine problems at the interplay between our internal predictions and the incoming sensory information.

Preregistrations

Functional dizziness – sensory motor processing: https://osf.io/xwejt

Functional movement disorder – sensory motor processing: https://osf.io/78xun

Expected results

1) Information on sensory-motor processing in patients with FD

2) Information on sensory-motor processing in patients with functional movement disorders compared to in patients with functional dizziness

3) Refined (computational) model of the underlying mechanism that informs a diagnostic tool

Planned secondments

  • Johannes Gutenberg-University Mainz (JGU), Mainz, Germany (Supervisor: Prof. Michael Witthöft); Start: Month 23; Duration: 3 months; Aim: learn about experimental approaches relevant to FD
  • National Research Council of Italy, Institute of Cognitive Sciences and Technologies (ISTC-CNR), Rome, Italy (Supervisor: Prof. Giovanni Pezzulo); Start: Month 26; Duration: 3 months; Aim: learn about computational modelling of sensory-motor processing
  • EyeSeeTec GmbH (EST), Munich, Germany (Supervisor: Prof. Erich Schneider); Start: Month 34; Duration: 4 months; Aim: gain insight into technical development of a diagnostic tool within a company setting

Supervisor/Centre

Prof. Joanna Rymaszewska, Wrocław Medical University, Poland

ESR

Saya Niwa, BSc, MSc, MBPsS

Project team on site

Co-supervisor: Prof. Dorota Szcześniak; Collaborators: Prof. Krzysztof Małyszczak, Ms. Karolina Fila-Witecka

Cooperation partners (secondments)

Academic partner: Prof. Omer Van den Bergh, KU Leuven. Industry partner: Mr. Niki Smit and Ms. Sarah Ticho, Explore DEEP LTD.

Title

Dysfunctional breathing as a trans-diagnostic mechanism underlying Functional Disorders (FD).

Background/Rationale

Breathing dysfunction has been observed clinically in patients with a range of FD, from persistent physical symptoms to functional neurological disorders. Many symptoms resulting from dysfunctional breathing are consistent with those of functional disorders, suggesting a relationship between the biomechanical, biochemical, and psychophysiological aspects of dysfunctional breathing and FD. Dysfunctional breathing patterns (DBP) often result in haemodynamic and chemical changes, with a range of concomitant symptoms as a consequence of an individual being in a near-constant sympathetic state. This research project will therefore identify the occurrence, features, and risk factors for the development of DBP in FD, to inform mechanism-specific diagnostic and treatment options.

Objectives/Hypotheses

Study 1:
– Occurrence of DBP is expected to be higher in patients with functional symptoms, regardless of their presenting primary functional symptoms than in health controls.

– Reported beliefs about breathing and breathlessness differ among patients with functional symptoms and healthy controls.

– Objective breathing measurements, such as minute ventilation, diaphragmatic breathing, heartrate variability and end-tidal CO2 are expected to yield different results in patients with functional symptoms and healthy controls.

– Subjective self-report measures on breathing patterns, such as Dyspnea-12 and the Nijmegen questionnaire are expected to yield different results in patients with functional symptoms and healthy controls.

Study 2:

– Individuals in the experimental group (VR-facilitated deep breathing programme) will exhibit changes in breathing patterns in patients with functional symptoms and healthy controls.

– Changes in breathing patterns resulting in the introduction of the breathing programme will vary between patients with functional symptoms and healthy controls.

– Individuals in the experimental group will report reductions in physical symptoms related to disordered breathing.

 

Design

Study 1: This study will implement an observational case-control design. Inclusion criteria: 18+, presenting with functional symptom, able to communicate in written/spoken Polish.

Exclusion criteria: serious physical illness, severe and enduring psychiatric illness (incl. psychosis), pregnant women. Participants recruited from the University Hospital in Wroclaw will be provided with an initial screening questionnaire in which they will be asked to fill out a series of questions including any symptoms and sociodemographic information. Participants will be asked to attend an appointment at the Wroclaw Medical University during which time they will be asked to complete a battery of questionnaires and non-invasive measurements of breathing function.

Study 2: This study will be a randomised feasibility trial implementing a deep breathing

programme delivered through virtual reality. We aim to retain participants from our case

control study, who will be randomised into an experimental arm (4 sessions of a VR

facilitated deep breathing programme) or treatment as usual arm. Questionnaires and non

invasive breathing measurements will be measured at each session.

Pre-registrations

 

Expected results

Study 1: we expect to find a higher occurrence of DBP as well as higher scores on measures of functional symptom severity (PHQ-15), exposure to trauma (LEC-5) depression (BDI) and anxiety (BAI) in patients with functional symptoms in comparison to healthy controls. Beliefs surrounding breathlessness and objective measurements of breathing are anticipated to yield different results among patients with functional symptoms and healthy controls. Study 2: we expect to find changes in self-reported and objective measures of DBP in participants in experimental group (changes expected to vary between patients with functional symptoms and controls). Expected reduction in frequency and severity of persistent physical symptoms in participants in experimental group versus TAU group. The results of these studies will inform the development of novel, mechanism-specific diagnostic and treatment options for FD. 

Planned secondments

Academic secondment: KU Leuven (February-July 2022); Supervisor: Prof. Omer Van den Bergh

; Supervisors: Mr. Niki Smit and Ms. Sarah Ticho

  • ESRLina Münker, Health & Medical Psychology, M.Sc.; Developmental Psychology, Res.M.Sc. (University of Leiden, NL); Department of Child and Adolescent Psychiatry, Aarhus University Hospital, Psychiatry, Denmark; Department of Clinical Medicine, Aarhus University; Department of Functional Disorders and Psychosomatics, Aarhus University Hospital, Denmark
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    Supervisor/Center: Prof. Charlotte Rask; Department of Child and Adolescent Psychiatry, Aarhus University Hospital, Psychiatry, Denmark; Department of Clinical Medicine, Aarhus University


Project team on site:

Dr. Martin Køster Rimvall; Child and Adolescent Mental Health Centre, Mental Health Services, Capital Region of Denmark, Hellerup, Denmark Department of Child and Adolescent Psychiatry, Copenhagen University Hospital – Psychiatry Region Zealand, Roskilde, Denmark
Prof. Lisbeth Frostholm; Department of Clinical Medicine, Aarhus University; 5 Department of Functional Disorders and Psychosomatics, Aarhus University Hospital, Denmark
Eva Ørnbøl; Department of Functional Disorders and Psychosomatics, Aarhus University Hospital, Denmark
Dr. Kaare Bro Wellnitz; Department of Functional Disorders and Psychosomatics, Aarhus University Hospital, Denmark
Prof. Pia Jeppesen; Department of Child and Adolescent Psychiatry, Copenhagen University Hospital – Psychiatry Region Zealand, Roskilde, Denmark; Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Denmark

 

Cooperation partners (secondments):

Mette Bødiker Vestergaard; Department of Health and Well-being; Children and Adolescents, Aarhus Municipality
Prof. Judith Rosmalen; University of Groningen, University Medical Center Groningen, Departments of Psychiatry and Internal medicine, Groningen, Netherlands
 

 Developmental trans-diagnostic mechanisms underlying Functional Disorders
 

Background/Rationale
Functional somatic symptoms (FSS) which cannot be attributed to a well-defined physical or psychiatric disease are common in child and adolescent populations. Most symptoms are mild, but can develop into severe and persistent symptomatology, i.e. functional disorders (FD), with associated negative long-term consequences. Current explanatory models emphasize complex, dynamic interactions between biological, psychosocial and environmental factors placing individuals at risk for developing FSS. From a developmental perspective, these models suggest FSS as an expression of an underlying genetic vulnerability, which in combination with exposure to early adversity could result in perceptual dysfunction, leading to the expression of severe FSS or FD. However, epidemiological research on FSS progression from childhood and adolescence towards adulthood is scarce. The overall aim of this ESR PhD project is therefore to investigate different facets of the developmental course of FSS, including symptom continuity, characteristic symptoms patterns in adolescence, potential early risk factors for developing persistent FSS, transgenerational transmission and adverse long-term consequences.


Objectives/Hypotheses

 
Study 1: Evaluate research diagnosis of FD criteria: Bodily Distress Syndrome (BDS) in adolescence; explore classification into illness severity groups & associations with levels of functioning and sociodemographic variables
 
Study 2: Explore homotypic (remission, stability, exacerbation) and heterotypic (comorbid psychopathologies) developmental courses of preadolescent FSS until late adolescence
 
Study 3: Investigate long-term psychiatric and somatic diagnostic outcomes of preadolescent FSS by assessing psychiatric and somatic registered diagnoses incidences and prescribed medication use until early adulthood
 
Study 4: Identify early risk & mediating factors of different developmental courses of FSS (i.e. interaction between early infancy factors and family adversity over time)
 
Study 5: Examine familiar health care patterns as proxy for possible transgenerational transmission of severe FSS in early childhood
 

Design

 
Longitudinal, observational study based on combined data from the Copenhagen Child Cohort CCC2000 and Danish national registers
 

Preregistrations

Embargoed:

Study 1: Can the unifying diagnostic construct of bodily distress syndrome (BDS) be used to assess functional somatic disorders in adolescence?
https://osf.io/6qbmd/?view_only=0515592803c9418fa791195591efdc34
 
Planned:
Study 2: Developmental trajectory of Functional Somatic Symptoms (FSS) from pre- to late adolescence and related psychopathology
Study 3: Long-term psychiatric and somatic outcomes of preadolescent FSS in early adulthood
Study 4: Early risk factors of the developmental course of Functional Somatic Symptoms
Study 5: Utilizing familiar health care patterns as a proxy for potential transgenerational transmission of severe FSS in early childhood
 

Expected results

1) Define the usefulness of the BDS diagnostic construct for FD in adolescents, 2) Advance knowledge on the developmental course of childhood FSS, long-term psychiatric and somatic morbidity of childhood FSS and early risk factors/mechanisms for severe FSS/FD 3) Define the effect of familiar health care patterns (i.e. the transgenerational transmission) on the presence of early childhood severe FSS.
 

Planned secondments

 
Academic secondment: September 2022 – February 2023 at the University Medical Center in Groningen, NL, with Prof. Judith Rosmalen. Activities: assist in data collection in ‘lifelines’ cohort study, analyze transgenerational transmission data. 
Nonacademic secondment: September – December 2023/2024 in Aarhus Municipality, DK, with Mette Bødiker Vestergaard. Activities: implement/disseminate research findings to youth preventive health care.

Work Package 2: Diagnosis of Functional Disorders

WP2 is focused on diagnosis of FD, and aims to examine the predictive validity of diagnostic criteria that are used in the mental health care, somatic healthcare, and primary care. This WP will involve three ESRs aiming to improve the current symptom-based diagnostic criteria that are insufficiently validated, and to simultaneously establish a basis for future improvements of diagnostic criteria.

ESR5 

Abigail Smakowski MSc. Clinical Neuropsychiatry

 

Supervisor/Center

Prof. Bernd Löwe, University Medical Center Hamburg-Eppendorf, Germany, Department of Psychosomatic Medicine and Psychotherapy

 

Project team on site: Dr. Anne Toussaint

 

Cooperation partners and Secondments:

Dr. Björn Meyer, PhD, GAIA, Digital Therapeutics, Hamburg, Germany

Prof. Judith Rosmalen, PhD, Faculty of Medical Sciences, University Medical Center Groningen, the Netherlands

Dr. Lineke Tak, PhD, Dimence Group, Deventer, the Netherlands

Prof. Nadine Lehnen, MD, Clinic for Psychosomatic Medicine and Psychotherapy, University Medical Center, Technical University Munich, Germany

 

Title: Predictive validity of diagnostic criteria of FD used in mental health care

 

Background

The diagnostic conceptualization of persistent and bothersome somatic symptoms differs, depending on the health care setting, and has been subject to discussion. With the implementation of DSM-5 and ICD-11, the category of somatoform disorders was revised and Somatic Symptom (SSD) and Bodily Distress Disorders (BDD) were introduced. These new classifications eliminate the distinction between medically explained and medically unexplained symptoms and emphases the importance of psychological features to further enhance validity. In parallel with these mental classifications, several specialty-specific classifications continue to evolve, including criteria for functional gastro-intestinal disorders or fibromyalgia. Since all these new concepts have some limitations, researchers from the EURONET-SOMA group recently proposed a new classification of Functional Somatic Disorder (FSD) that is neither purely somatic nor mental.

 

Objectives

The process of revising diagnoses for persistent somatic symptoms should be informed by the broader goal to improve reliability, diagnostic validity and clinical utility. An evaluation of the new FSD criteria regarding their validity and clinical utility in comparison to other current diagnostic concepts is so far lacking, and the validity on how mental disorders should be judged is complex. In this PhD project, relevant evidence to assess the suitability of the current diagnostic criteria in mental health care settings will be established.

 

Design

The validity of different diagnostic concepts for persistent somatic symptoms will be assessed by utilising data from various sources: the scientific literature, a prospective cohort study, and an existing population database.

 

A systematic review will be conducted to identify the most relevant psychological features in somatic symptom and bodily distress disorders.

 

In a cross-sectional part of our empirical study, we will determine frequencies of the competing classification proposals for persistent somatic symptoms in a psychosomatic outpatient sample (n = 240), investigate differences in sociodemographic and (psycho)pathological characteristics between these diagnostic groups, and explore their clinical relevance in terms of impairment and health care utilization.

 

In a prospective part of this study, the medium (6-month)- and long-term (12-month) prognostic validity of the classification proposals towards disorder-relevant factors will be examined. In addition, we will compare patients with persistent diagnoses to cases of remission, new incidences, and patients without diagnosis on relevant sociodemographic and (patho)psychological variables, and investigate potential predictors.

 

Frequency and predictive validity of diagnostic criteria for persistent somatic symptoms will also be analysed in a pre-existing large data set of the lifelines cohort (https://www.lifelines.nl/).

 

Expected Results

This project will identify the most valid and predictive diagnostic criteria for persistent and bothersome somatic symptoms that could form an evidenced basis for future diagnostic classification systems.

 

Preregistration

To be completed.

 

Secondments

GAIA, Digital Therapeutics, Hamburg, Germany, February 2022.

Supervisor: Dr. Björn Meyer, PhD.

 

Faculty of Medical Sciences, University Medical Center Groningen, the Netherlands, September 2022 – January 2023.

Supervisor: Prof. Judith Rosmalen, PhD.

 

Dimence Group, Deventer, the Netherlands, February – March 2023.

Supervisor: Dr. Lineke Tak, PhD.

 

Clinic for Psychosomatic Medicine and Psychotherapy, University Medical Center, Technical University Munich, Germany, September – October 2023.

Supervisor: Prof. Nadine Lehnen, MD.

ESR6

Mais Tattan MD. MSc

 

Supervisor/Center

Prof. Judith Rosmalen and Dr. Denise Hanssen

University of Groningen, University Medical Center Groningen, Groningen, the Netherlands, Interdisciplinary Center Psychopathology and Emotion regulation.

 

ESR

Mais Tattan MD. MSc

 

Project team on site

Prof. Judith Rosmalen, Dr. Denise Hanssen, Dr. Janna Gol

 

Cooperation partners (secondments)

Prof. Per Fink, Clinic for Functional Disorders, Aarhus University Hospital (AUH), Aarhus, Denmark.

Prof. Jon Stone, Neurology, Centre for Clinical Brain Sciences, University of Edinburgh (UoE), Edinburgh, UK

Mrs. Deirdre Ryan, Pain Alliance Europe (PAE), Brussels, Belgium

 

Title

Predictive validity of diagnostic criteria of Functional Disorders used in somatic healthcare.

 

Background/Rationale

Based on research results of the past 30 years, the diagnostic criteria for the former category of “somatoform disorders and somatisation disorder” were substantially revised. In 2013 the American Psychiatric Association (APA) launched the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), in 2019 the World Health Organization (WHO) launched the 11th edition of the International Classification of Diseases (ICD-11), and recently the EURONET-SOMA group suggested revised criteria for FD. To date, there are scarce findings on the validity, clinical utility and patient perspective of the new DSM-V and ICD-11 diagnostic criteria.

In this work package, the validity, clinical utility and patient perspective of current diagnostic criteria for FD will be systematically tested, with this project focusing on diagnoses used in somatic health care.

 

Objectives/Hypotheses

The main goal of this project is to perform the first encompassing study on the role of diagnostic labels for Functional Disorders (FD). The ESR in this project will strive to answer two main questions.
First, what are the predictors of receiving a diagnostic label of FD?
Second, what are the positive and/or negative outcomes of receiving such a label?
To answer these questions, this project will utilise a multi-method approach, which will combine quantitative analyses of epidemiological cohorts and qualitative analyses of in-depth interviews.

 

Design

The ESR in this work package will conduct five studies to answer the main research questions mentioned previously. First, a systematic review of the literature will be performed to gather available knowledge on the predictors and outcomes of receiving a diagnostic label of FD.
The second and third studies will examine the predictors and outcomes of receiving a diagnostic label for FD by analyzing data in two large population-based cohorts in the Netherlands (LifeLines) and Denmark (DanFund). The diagnostic criteria and self-reported labels for several FD will also be included. Additionally, we will study whether receiving different diagnostic labels for FD predicts the prognosis of the patient. This will be done by analysing the symptom burden over time in patients who did or did not receive a diagnosis of FD.

The Forth study in this work package will be a quantitative study based on the data collected by a European-wide survey (conducted by other ESRs in the ETUDE project) which will include questions on stigmatizing effects of diagnostic labels.

Lastly, a qualitative study using a grounded theory approach will be conducted with patients of FD. This will be done using semi-structured in-depth interviews to gain insight on meaning and outcomes of receiving any of the various diagnostic labels in the field of FD.

 

Preregistrations

All studies in this work package will be pre-registered with OSF and published open access.

 

Expected Results

By performing the previously mentioned studies, this ESR project will provide insight on the predictors for various diagnostic labels in patients fulfilling the diagnostic criteria of FD. Moreover, this project will highlight the effects and consequences of having a diagnostic label on the prognosis of FD patients. This project will also present the lived-in experiences of FD patients by showcasing the predictors and consequences of receiving a diagnostic label of FD from a patient perspective.

 

Planned secondments and research visits: 

 

  1. Pain Alliance Europe (PAE), Brussels, Belgium. (Supervisor: Mrs. Ryan). Duration: 4 months.
    Aim: Learn from patient experiences in different countries.
  2. Aarhus University Hospital (AUH), Research Clinic Functional Disorders (Supervisor: Prof. Frostholm), Aarhus, Denmark. Duration: 4 months. Aim: Perform the analysis in Danish DanFund cohort.
  3. University of Edinburgh (UoE), Neurology, Centre for Clinical Brain Sciences (Supervisor: Prof. Stone), Edinburgh, UK. Duration: 2 months. Aim: Analyse the survey data with respect to stigmatizing effects of diagnostic labels to prepare the interview scheme.

Objectives

The main goal of this project is to study current health care trajectories and predictors of an unfavourable course in patients visiting the General Practitioner (GP) with persistent symptoms, by epidemiological analyses of detailed GP registry data. First, we will quantify the incidence and prevalence of an unfavourable course of symptom diagnosis in primary care. Second, we will describe the management strategies of GPs in patients presenting with persistent symptoms during the episodes of care, by quantifying the interventions registered by the GP (physical examination, referral, medication etc). Third, we will study which factors (such as age, sex, SES, level of education, employment status, reason for encounter, comorbidity, medication use, etc.) predict an unfavourable course  in patients visiting their GP for persistent symptoms. Fourth, we will develop and validate a prediction rule for an unfavourable course of functional disorders in primary care. Finally, we will repeat all analyses in data from Malta.

 

Expected Results

We will provide the incidence and prevalence of symptom diagnosis in Dutch primary care. We will present the predictive factors of an unfavourable course for symptom diagnosis. We will build a validated prediction rule for predicting an unfavourable course in patients visiting their GP with symptom diagnosis.

 

Planned secondments and research visits

  1. USUMA GmbH, Market and Social Research, Berlin, Germany (Dr. Schunter); Duration: 6 months; Aim: learn how to set-up and perform a cross-European survey
  2. Mediterranean Institute of Primary Care (MIPC), Malta (Dr. Soler); Duration: 4 months; Aim: replicate analyses in registry data from Malta

Work Package 3: Treatment of Functional Disorders

WP3 is focused on treatment of FD, and aims to inform evidence-based European recommendations on treatment and health care for patients with FD that include content as well as organization of care for FD. The five involved ESRs will collectively provide the first encompassing overview of health care for FD across Europe, and will improve care for FD by developing specific products, services and new modes of delivery, and indicators to evaluate them.

ESR 8

Caroline Rometsch, MD, M. Sc. Psy.

Supervisor/Center

Fiammetta Cosci, MD, M. Sc., PhD, University of Florence, Italy, Department of Health Sciences, Department of Experimental and Clinical Medicine

 

 

Project team on site:

Fiammetta Cosci, MD, M. Sc., PhD, Giovanni Mansueto, Psy. D., M. Sc., PhD, Caterina Romaniello,Psy. D., Sara Romanazzo, Psy. D.

 

Cooperation partners:

Prof. Alexandra Martin, University of Wuppertal (BUW), Wuppertal, Germany, Clinical Psychology and Psychotherapy

Dr. Liliana Dias, Bound – Intelligent Health Capital (BIHC), Lisboa, Portugal

Effective treatment for FD across diagnoses and disciplines

 

Background/Rationale

Although functional disorders occur frequently, the exact number of how many patients indeed suffer from functional disorders remains unclear. A frequent problem in answering this question arises from the different names used for functional disorders, including somatoform disorders and unexplained or persistent somatic symptoms. These inconsistencies originate not only in international classifications systems, but also in the wide variety of clinical and scientifical approaches worldwide. The same applies to the question of identifying predictors of treatment success for functional disorders in order to describe the effectivity of symptom-specific treatment options.

 

Objectives

To give an overview of the prevalence and predictors of treatment efficacy of functional disorders and to detect health care related factors involved in the symptom persistence.

 

Design

Systematic reviews and meta-analyses will be used to systematically summarize and analyze available scientific literature. Finally, the results will be used to contribute and cooperate with other ESRs to conduct an online survey across Europe with a special focus on identifying factors that lead to symptom persistence.

 

Preregistrations

PROSPERO and Open Science (OSF)

https://osf.io/w52jm

 

Expected results

The systematic reviews and meta-analyses will give an overview of the existing literature on the prevalence and predictors of treatment success of functional disorders. These investigations will provide the basis for ensuring a uniform scientific approach. Subgroup analyses will reveal further specific information on the prevalence and predictors of treatments in various patient groups. The online survey will investigate factors of symptom persistence and will be transferred to the occupational setting. All results will be used to provide European treatment recommendations for functional disorders.

 

Planned secondments

University of Wuppertal (BUW), Germany; Supervisor: Prof. Alexandra Martin, start: Month 20; Duration: 6 months; Aim: learn about and perform a review on predictors of treatment efficacy

Bound – Intelligent Health Capital (BIHC), Portugal; Supervisor: Liliana Dias, start: Month 32, Duration: 4 months; Aim: learn about and perform a review on FD in occupational settings

ESR
ESR9 MSc Aleksandra (Ola) Kustra-Mulder


Supervisor/Center
Prof. Bernd Löwe
University Medical Center Hamburg-Eppendorf, Germany, Department of Psychosomatic Medicine and Psychotherapy

 

Project team on site
Dr. Angelika Weigel

Cooperation partners (secondments)
Dr. Jürgen Schunter, USUMA GmbH, Germany
Prof. Joanna Rymaszewska, Wrocław Medical University, Poland, Department of Psychiatry
Prof. Fiametta Cosci, University of Florence, Italy, Department of Health Science
Prof. Judith Rosmalen, Univerity Medical Center Groningen, Netherlands, Department of Psychiatry and Internal Medicine

HealthCare-Related Factors of Somatic Symptom Persistence across Europe

 

Background/Rationale
To date, most patients affected by Persistent Somatic Symptoms (PSS) ultimately do not receive guideline-based treatment and develop a chronic disease course. Further, the treatment options considered appropriate for PSS vary considerably across Europe. Therefore, this project aims to identify healthcare-related aspects related to PSS prognosis across Europe. The project consists of two phases. In the first phase, a scoping review of potential healthcare-related factors contributing to symptom persistence and deterioration will be conducted. Based on these findings and a panel discussion with experts from the ETUDE network, we will conduct cross-cultural online surveys including participants at risk or with PSS (elevated scores on PHQ-15 and SSD-12) in the second phase. These results will allow us to identify generic and country-specific factors involved in symptom persistence over time and the most relevant factors involved in symptom deterioration. The online survey will be followed by a cross-cultural qualitative study involving healthcare professionals. Semi-structured interview guidelines will be developed for in-depth interviews with healthcare professionals to capture their perspectives on challenges in health care for FD and their needs concerning a successful implementation of pan-European guidelines.

Objectives/Hypotheses
To identify healthcare aspects contributing to patients’ persistence and exacerbation of somatic symptoms across Europe.

Design
Study 1: Scoping review
Study 2: Pan-European cross-sectional observational online study (individuals with or at risk for PSS)
Study 3a: Pan-European cross-sectional observational online study (healthcare professionals)
Study 3b: Qualitative semi-structured interviews
 
Preregistrations
To be completed

Expected results
The expected outcome of this research project is the identification of healthcare system-related factors contributing to symptom persistence in different European countries. Furthermore, the insights achieved in this research project will be synthesized into European recommendations for the management of PSS. These ultimately will contribute to an improved early recognition and treatment initiation and help avoid a long duration of untreated illness in PSS.

Planned secondments
USUMA GmbH, Market and Social Research, Berlin, Germany
Supervisor: Dr. Jürgen Schunter
Aim: To learn how to set-up and perform a pan-European survey
Duration: 5 months (January – May 2022)
Wrocław Medical University (WMU), Poland, Department of Psychiatry
Supervisor: Prof. Joanna Rymaszewska
Aim: To learn about healthcare systems in Eastern Europe and conduct interviews with healthcare professionals
Duration: 1 month (August 2022)
University of Florence (UNIFI), Florence, Italy, Department of Health Science, Italy
Supervisor: Prof. Fiametta Cosci
Aim: To learn about healthcare systems in Southern Europe and conduct interviews with healthcare professionals
Duration: 1 month (September 2022)
University Medical Center Groningen, Groningen, the Netherlands, Departments of Psychiatry and Internal Medicine
Supervisor: Prof. Judith Rosmalen
Aim: To learn about healthcare systems in Western Europe and conduct interviews with healthcare professionals
Duration: 3 months (October – December 2022)

 

 

ESR: Dr Chloe Saunders

Supervisor/Centre: Prof. Lisbeth Frosthølm/ Research Clinic for Functional Disorders, Aarhus University Hospital, Denmark

Project team on site: Dr Heidi Pederson, Prof. Charlotte Rask

Cooperation partners (secondments): Prof Chris Burton, Academic Unit of Primary Medical Care,

Patient-centred eHealth as an accessible first step intervention for FD

Background/Rationale

In the area of functional disorders, patient education and illness perception are known to be important for patient outcomes. People are increasingly seeking health information online which has contributed to a paradigm shift in the professional-patient relationship. However, there is a lack of high quality, accessible, evidence based online educational resources which frame functional symptoms in a holistic way, address negative illness perceptions and help with adaptive symptom management. Terminology and explanations given about functional disorders also differ across treatment centers in Europe, which can contribute to confusion and stigma.

Objectives/Hypotheses

  1. In the first part of my project I aim to understand and describe how explanations about functional symptoms differ in treatment settings across Europe.
  2. The aim of the second part of my project is to develop an online education resource for people experiencing functional somatic symptoms at an early stage in their symptom development. Once developed, we aim to carry out a feasibility test of the digital education resource in multiple European languages. It is our objective that the project will be co-created with people who have lived experience of functional symptoms, and with healthcare professionals across multiple countries. It is hoped this participatory design will improve the relevance (Acceptability and Usability) of the project output to the end users.Once developed and evaluated, we aim this resource will be available open access to the Public.

Design

  1. Study 1 is designed as a three stage mixed methods study. Three types of data will be systematically collected and analysed: Patient Educational Resources, Survey Data from Healthcare professionals, and Interviews with healthcare professionals. (Please link to Preregistration for detailed protocol).
  2. The second study will proceed as participatory design in three phases. Phase 1 will explore the current problems related to online access to information about functional symptoms and agree potential solutions with identified stakeholders. Phase 2 will involve iterative development and modification of a digital information resource centering usability testing protocols. Phase 3 will focus of evaluation of the resource in multi-centre international settings.

 

Preregistrations: https://archive.org/details/osf-registrations-cmkf9-v1

Expected results

The EURONET-SOMA network has identified that developing effective dissemination strategies is a key challenge in bridging the gap between evidence based guidelines and clinical reality for patients experiencing functional symptoms. A high proportion of individuals who would benefit from expertise in functional disorders do not currently have access to specialist services. We hope that Development of an online educational resource based in available evidence and cross-European clinical expertise can play a part in meeting these challenges.  

Planned secondments

January to April 2022: Academic Secondment at The University of Sheffield, Academic Unit of Primary Medical Care, United Kingdom under the Supervision of Prof Christopher Burton.

Jan-Feb 2023 Industry Secondment at Reducept, a commercial e-health company based in Hilversum, Netherlands. My supervisor will be co-founder and head of product science, Louis Zantema.

ESR: Verónica Cabreira

Supervisor/Center: Prof. Alan Carson, Centre for Clinical Brain Sciences, University of Edinburgh and Royal Infirmary of Edinburgh, United Kingdom

 

Project team on site: Prof. Jon Stone

Cooperation partners (secondments):

  • Lisbeth Frostholm, Department of Clinical Medicine, Aarhus University Hospital, Denmark
  • digital agency, Edinburgh, United Kingdom

Treatment for Functional Disorders patients with functional cognitive symptoms

Background/Rationale

A growing number of people who seek help in memory clinics worried about developing dementia, will not in fact have a degenerative brain disease neither progress to dementia. A significant proportion of these complaints will have a functional basis, with a major impact on social functioning and employment. This study will focus on the development of a diagnostic model for the consistent identification of patients, to avoid misdiagnosis and allow for early post-diagnosis treatment referral. We will develop and conduct preliminary acceptability testing for an eHealth treatment package based on a combination of education, metacognition training and cognitive behavioural therapy for functional cognitive symptoms.

Objectives

  • To systematically review and appraise the literature on diagnostic positive features of functional cognitive disorders and eHealth interventions for patients with cognitive disorders;
  • To build and conduct a Delphi exercise with a panel of experts pertaining functional cognitive disorders diagnosis;
  • To develop a diagnostic tool of FCD (checklist) to be used as a digital decision assistance aid in a variety of clinical settings;
  • To develop a prototype of an eHealth program (computer based cognitive behavioral therapy and metacognition training) for early post diagnostic use, that is acceptable and relevant to users across Europe;
  • To feasibility test the developed eHealth prototype in a pilot randomized trial.

Design

Our project will be carried out in different phases. First, a systematic review on diagnostic decision tools for the diagnosis of FCD will be conducted to inform our next steps. Second, we will focus on collecting data related to the current diagnostic approaches and information on FCD practices, through a Delphi exercise applied to a panel of experts in memory disorders. Collected positive signs will be reviewed, and after removing redundant items, a diagnostic inclusive decision tool will be constructed to identify FD patients presenting with functional cognitive symptoms in different clinical settings. Later, a systematic review on eHealth treatment therapies in patients with cognitive disorders will inform the development of a treatment package for the online delivery of guided treatment, using an iterative participatory design with patient collaboration. We will seek to demonstrate feasibility in acceptability in a pilot trial to aid power calculations for a future larger multicenter trial. The study will be interdisciplinary and unite academic and non-academic partnerships, in keeping with ETUDE study design.

Preregistrations

This study will be pre-registered with the Open Science Foundation.

Expected results

The ESR 11 outputs will bridge the gap between evidence-based guidelines and clinical reality in Functional Cognitive Disorders. The production of 1) a digital aid to identify positive diagnostic profiles of FCD and 2) an early treatment package will overcome care delivery barriers including a limited access to specialist services. The developed tools may be of assistance in diagnosis for other functional disorders as the finding of cognitive impairments appears ubiquitous across all functional somatic symptoms and might as well be a useful contribution to understanding biological processes of neurodegeneration.

Planned secondments

  • Supervisor: Prof. Lisbeth Frostholm, Department of Clinical Medicine, Aarhus University Hospital, Denmark (4 months, M 15-19)
    • Aim: gain expertise in complex intervention development and participatory trial design
  • Daysix digital agency, Edinburgh, United Kingdom (6 months, M 32-38)
    • Aim: learn how to develop a digital product based on research ideas.-

ESR: Nick Mamo MD MSc MRCGP   

Supervisor/Center: Prof. Judith Rosmalen, UMCG, Groningen, the Netherlands; Dr. Lineke Tak, Dimence Groep, Deventer, the Netherlands

Project team on site: Dr. Tim olde Hartman, RadboudUMC, Nijmegen, the Netherlands Dr. Denise Hanssen, UMCG, Groningen, the Netherlands

Cooperation partners (secondments): Prof Bernd Löwe, Dr Angelika Weigel & Dr Anne Toussaint, UKE, Hamburg, Germany; Dr Jeanette Lezwijn, ProScoop, Zwolle, the Netherlands

Collaborative Care Networks for Functional Disorders and Persistent Somatic Symptoms

Background/Rationale

Patient-centred treatment for Functional Disorders (FD) is largely lacking, due to the fragmented care that is organised around disciplines, with a specific gap between somatic and psychiatric health care. Consequently, negative experiences with the health care system are frequent, availability of treatment for FD varies widely between disciplines and across European countries, and the collaboration between different care providers is often problematic. Currently, care for patients with FD is experienced as fragmented, and there are likely to be gaps in provision, for example for patients whose complexity falls between primary and specialist care. This leads to unnecessary referrals, waiting lists, irritation and powerlessness in the cooperation between care providers with all the negative consequences for patients with FD, care providers and care financiers. By providing the right care in the right place, further deterioration is prevented, patients are treated more quickly, and budgets are used more effectively.

Objectives/Hypotheses

The main goal of this project is to come to a system of patient-centred care for patients with FD through collaborative care networks. We will make use of a modified Delphi approach, involving patients and professionals from somatic and mental health care, to develop and define the relevant structure and process indicators. We will test barriers in the care as experienced by patients and health care professionals, by the Delphi method, contributing also to a cross-European survey. We will test a method to come to a matched-care approach that is supported by different health care professionals. This ESR will learn principles of participatory action research: when problems in feasibility are encountered, methods will be adapted and re-evaluated. For large scale dissemination, this ESR will develop a toolbox with general conditions for a collaborative care network for patients with FD.

Design

This project will use a mixed method approach, focused on qualitative research. Aside from a systematic review, as mentioned above there will be a Delphi process, interview and survey data, and through the participatory action research other methods will also be utilised.

Preregistrations

Systematic Review and Delphi study pre-registered on OSF; further studies will be registered in due course.

Expected results

Structure and process indicators – for evaluation of quality of health care for FD
Report on barriers in care experienced by patients and health care professionals
Method to come to matched care approach supported by patients and health care professionals
Toolbox to develop collaborative care networks for FD

Planned secondments
– December 2021 to March 2022 – UKE, Hamburg. Here the focus of the secondment will include working on the Delphi study and recruiting participants in Germany, getting support on the Systematic review as well as engaging in scientific/research discussions and being part of weekly ETUDE meetings.

– July to October 2022 – ProScoop, Zwolle. This is a consultancy company working with professionals in a range of health areas. Here I will learn from how to engage with different groups and build networks. I will also support Dr Hanssen on an implementation survey study she is undertaking with ProScoop, and expand this with an interview study to build on the outcome from the surve

Work Package 4: Stigma associated with Functional Disorders

WP4 is focused on the stigma that patients with FD meet, both from health care professionals as well as from other patients and the general society. Collectively, the three ESRs in this work package will study stigma, and develop and evaluate methods and products to reduce it.

ESR: Brodie Mcghie-Fraser MSc

 

Supervisor/Center: Dr. Tim olde Hartman, Radboud university medical centre (Radboudumc), Nijmegen, Netherlands 

Project team on site: Dr. Peter Lucassen 

Negative attitudes in health care professionals: occurence and interventions

Background 

Despite the high prevalence of functional somatic symptoms in the general population, inaccurate beliefs and negative attitudes are widespread. Healthcare professionals play a central role in managing functional somatic symptoms. However, previous research has highlighted how professionals can find working with these patients challenging, and in some cases have negative emotions about these patients. Stigmatising attitudes of healthcare professionals have implications for the prevention, management and treatment of symptoms, and quality of life of patients. There is a growing number of studies exploring functional somatic symptom and syndrome related stigma among patients and the general public. To our knowledge, there is no evidence that investigates stigma in a systematic way across groups of healthcare professionals or countries. Valid and reliable measurements of stigma are needed to understand its prevalence, but also to design effective interventions against stigma and evaluate their progress. Therefore, this project will explore functional somatic symptom related stigma among healthcare professionals, raise awareness and develop an intervention to reduce stigma.   

Objectives/hypotheses 

1) To learn how to assess functional somatic symptom related stigma among healthcare professionals 2) To study stigmatising attitudes of healthcare professionals across different countries and professions 3) To develop an eLearning on stigma.   

Design

  • Study 1: Systematic review of measurement instruments (recommendation of measurement instrument to measure attitudes of healthcare professionals)
  • Study 2: Validation of measurement instrument (assessing the quality of its measurement properties through cognitive interviewing and testing for reliability)
  • Study 3: Measurement of attitudes of healthcare professionals across different countries and groups of professionals
  • Study 4: Develop an e-learning module to improve knowledge around functional somatic symptoms, challenge stigmatising attitudes, and promote best practice examples

  

Preregistrations
Measuring functional somatic symptom and syndrome related stigma among healthcare professionals: a systematic review. Pre-registered in PROSPERO (CRD42021287798). The project file is available on Open Science (https://osf.io/kjx56/).

 

Expected results

We hope that we can gain a deeper insight into the experience and attitudes of healthcare professionals as they work with patients with functional somatic symptoms. This will create a foundation for improving medical care and quality of life of those affected. To do this, we want to learn about the best methods to assess attitudes in healthcare professionals, and measure these across different countries and groups of healthcare professionals. We want to understand their perspectives and challenges when working with these patients, and share examples of best practice. To counter stigmatising attitudes, we expect to develop an e-learning module for healthcare professionals.   

Planned secondments 

(2 months) University Medical Center Hamburg-Eppendorf (Germany) Supervisor: Bernd Löwe Aim: To learn about methods this group have developed and used in their previous research on stigma   2022 

(3 months) Wroclaw Medical University (Poland) Supervisor: Joanna Rymaszewska Aim: To learn about methods this group have developed and used in their previous research on stigma, in order to assess stigmatising attitudes across European countries   2023 

(5 months) De Bagagedrager (Netherlands) Supervisor: Astrid Elferink Aim: to learn about developments of anti-stigma products

 

ESR: Hõbe Treufeldt

Supervisor/Centre: Prof. Chris Burton, University of Sheffield Academic Unit of Primary Care, United Kingdom

Project team on site: Dr. Traci Walker

Cooperative partners: 

Pain Alliance Europe (PAN), Brussels, Belgium (Supervisor: Mr. van Griensven)

Grasshopper Films (GbR), Tübingen, Germany (Supervisor: Mrs. Ross)

Radboud University Medical Centre Nijmegen (RUMC), Radboud Institute for Health Sciences (Supervisor: Dr. Olde Hartman)

– 

Providing acceptable patient-centred explanations for Functional Disorders

Background/Rationale

Stigma is a social attribute that links a person to an undesirable characteristic. It can manifest in different ways such as: implicit bias, prejudice or discrimination. Stigma has adverse consequences for patients: including emotional distress, medication non-adherence, creating barriers to accessing care and, potentially, worsening symptoms and disability.

Stigma appears to be particularly prevailing in people with Functional Disorders (FD). Reasons for this include that symptoms are usually invisible and FDs currently cannot be associated with any single consistent cause or pathology. Because of this, patients commonly experience a lack of knowledge, uncertainty and doubt from their clinicians and within their social networks. Together, these act to produce stigma in, and towards, people with FDs.

Objectives/Hypotheses

The main goal of this project is to plan, develop and evaluate a training package for medical students and doctors about FDs that seek to minimise stigma. The aim is to create specific guidance and training materials containing knowledge and techniques that medical professionals can use in their everyday practice. In particular, these will focus on finding acceptable patient-centred explanations for FDs which reduce stigma and facilitate therapeutic alliance.

Design

The research has five work packages:

  1. Conducting a systematic scoping review in order to understand the current state of knowledge in the literature regarding stigma in medical consultations regarding FDs
  2. Analysing recordings of medical consultations regarding FDs using Conversation analysis to understand how stigma is conveyed and perceived on an interaction level.
  3. Focus group study – to understand the lived experiences of patients with FDs and how they have experienced medical consultations and stigma.
  4. Design and testing of Patient-centred explanations regarding FDs that reduce stigmatisation.
  5. Development of educational materials for medical students, practising physicians and other healthcare professionals who are communicating with patients about FDs
 

Preregistrations

Systematic scoping review registered on OSF

Stigma and stigmatisation in clinical encounters for Functional Disorders: A systematic scoping review – EAPM poster

https://osf.io/m5zrw/

Expected results
We will develop a suite of training materials for students and doctors. We will share the findings of our literature review and analysis of consultations by presenting at conferences, discussion with patient organisations and publication in scientific journals.

Planned secondments

Pain Alliance Europe (PAN), Brussels, Belgium (Supervisor: Mr. van Griensven); Aim: learn about the patient perspective on acceptable explanations

Grasshopper Films (GbR), Tübingen, Germany (Supervisor: Mrs. Ross); Aim: produce an interactive video to train clinicians in explanations

Radboud University Medical Centre Nijmegen (RUMC), Radboud Institute for Health Sciences (Supervisor: Dr. olde Hartman), Nijmegen, Netherlands; Aim: develop training materials

 

ESR: Caoimhe McLoughlin

Supervisor/Centre: Prof. Jon Stone/ Neurology, Centre for Clinical Brain Sciences, University of Edinburgh, UK

Cooperation partners (secondments): 

Professor Marina de Koning-Tijssen, Neurology, University Medical Center, Groningen, the Netherlands

Dr. Lineke Tak, Psychiatry Deventer, Netherlands

Anna Ross, Grasshopper Kreativ, Tubingen, Germany

Online and offline stigma for FD in the general population: occurence and interventions

Objectives

To evaluate and address positive and negative patient experiences in individuals with Functional Neurological Disorder (FND).

Functional Neurological Disorder (FND) describes a group of disorders where the problem is caused by abnormal brain functioning rather than structural damage to the neurological system. FND can present in a similar way to other neurological conditions (such as fits in epilepsy or weakness in stroke), but the underlying mechanisms are different. Despite FND being a relatively common and disabling condition, inaccurate perceptions of this condition are widespread and patients report a high degree of stigma. Stigma can manifest in many ways such as implicit bias, prejudice or discrimination and can come from many sources.

We aim to carry out a longitudinal prospective study examining the patient experience of having FND from the beginning of diagnosis. Using a mixed methods approach, we will be looking at stigma and factors that may increase it, as well as factors that promote positive experiences. In addition to our clinical study we will be looking at stigma and anti-stigma themes in the online domain. In the latter part of the project we will use this information to create an anti-stigma intervention. Our methods shall be informed by an initial systematic review of the scientific literature on this topic. Our overall aims are in keeping with the other ETUDE projects – to expand and integrate the knowledge of Functional Disorders (FD) across Europe and hopefully contribute to improving outcomes for individuals affected by FD. 

 

Expected Results

We hope to gain deeper insight into the causes and consequences of negative and positive patient experiences in FND. We expect that stigma is a complex process influenced by different interactions in different circumstances, not just healthcare workers as has been reported, but by other caregivers and society in general. We hope this pilot anti-stigma campaign be a step forward in tackling negative experiences for patients with FND and other FD in the future.   

 

Secondments

Professor Marina de Koning-Tijssen, Neurology, University Medical Center, Groningen, the Netherlands

Dr. Lineke Tak, Psychiatry Deventer, Netherlands

Anna Ross, Grasshopper Kreativ, Tubingen, Germany