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Institute of Outcomes Research

The following ongoing and completed research projects were successfully initiated by the scientists of the Institute of Outcomes Research:

Ongoing Projects

Project: H2O – Health Outcomes Observatory

Funding: This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 945345-2. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA and from Trial Nation and JDRF. The total project cost is 21.978.938,- €, of which IMI funding for the public partners is 10.476.678,- €. MedUni Vienna receives 2.181.474,- € as the coordinator.

Duration: 01.10.2020–30.09.2025

Team members (OR): Margaret Andrews, Tanja Stamm, Valentin Ritschl, Erika Mosor, Preston Long, Melanie Ferk-Dornstauder

Partners: Medical University of Vienna (coordinator) and Takeda Pharmaceuticals International AG (project leader); Charité – Universitätsmedizin Berlin, Erasmus Universitair Medisch Centrum Rotterdam, Institut Català de la Salut – Hospital Universitari Vall d’Hebron, Novartis Pharma AG, F. Hoffmann-La Roche Ltd, and Eli Lilly International as Executive Committee members; and King’s College London, Katholieke Universiteit Leuven, Forum Europeen des Patients / European Patients’ Forum, The European Institute for Innovation through Health Data, The Hyve BV, TEAM IT Research, Karolinska Universitetssjukhuset, Università Vita-Salute San Raffaele, De Stichting Integraal Kankercentrum Nederland, AbbVie INC, JDRF, Medtronic International Trading SARL, Pfizer Ltd, Sanofi-Aventis Recherche & Development, and Trial Nation as consortium members.

Project description:

European Initiative Amplifies the Patient Voice to Improve Health Care Outcomes and Sustainability

Today, many measures of disease (and health outcomes) are based largely on input from clinicians. As such they do not fully capture patients’ own experiences of the disease and its impact on their lives. An important gap lies in our (still limited) understanding of the value of outcomes to patients, with a corresponding challenge of how this information can be incorporated into the process of care. This needs to be solved before healthcare systems can be considered value based.

H2O is the first-ever attempt to collect and incorporate standardized patient outcomes into health care decision making – at an individual and population level – across multiple jurisdictions in Europe. The project's objective is to collect patient-reported outcomes in a standardized way and use aggregated, anonymized data to define outcome-based values for health care intervention. To accomplish this, H2O will set up ‘health outcomes observatories’ in four countries covering three disease areas initially: diabetes, inflammatory bowel disease, and cancer. National observatories have already been established in Austria, Spain and the Netherlands, with Germany to follow soon. A Pan-European observatory will shortly be launched in Denmark, with an additional Danish national observatory. In the longer term, the project is working to expand to additional countries, a wider range of disease areas, and more technology partners.

The health outcomes observatories will work by providing or connecting patients with digital tools to report their health outcomes in a standardized way. Patients will always maintain control of their own data and will decide who can access it. At one level, the information will help clinicians and patients to make better decisions on their care. Meanwhile, the data will be anonymized and tracked so that individual patients and their clinicians can compare their progress with other patients with similar health issues. This aggregated data could also form the basis of research into new, innovative, evidence-based treatments.

“H2O will give patients in Europe a more influential voice on medical decisions. For the first time, we will collect patient-reported data on a large scale in four European countries. We will unify the fragmented European outcome data to better serve patients and other stakeholders and initiate a more competitive outcomes research environment in Europe.”

Univ.-Prof. Dr. Tanja Stamm

Project: BETTER – Being Equipped To Tackle Epidemics Right

Funding: Wiener Wissenschafts-, Forschungs- und Technologiefonds – WWTF

Duration: 01.03.2023–28.02.2026 (36 Monate)

Team members (OR): Erika Mosor, Tanja Stamm, Valentin Ritschl, Lisa Sperl, Michael Vorstandlechner

Partners: Donau Universität, dwh

Project description: Despite more frequent and restrictive containment measures than most comparable European countries during the COVID-19 pandemic, Austria did not fare significantly better in terms of pandemic mortality and societal costs. Exploring and understanding the conditions and factors associated with the successful and failed policies that shaped the course of the pandemic in Austria is essential to guide investment and planning for better preparedness and more effective response to future epi- and pandemics. To date, Austria has not evaluated the effectiveness of its measures and policies. In situations where scientific evidence is lacking, modelling has become an important tool for understanding how policies work under different scenarios. Modelling the impact of different policies and epidemiological decisions (e.g., duration of lockdowns, school closures) on Austria during the COVID-19 pandemic using real-world data is a meaningful way to learn and prepare for future public health crises due to infectious disease outbreaks. The overall goal of BETTER is to derive concrete recommendations for improving Austria’s future epi- and pandemic preparedness through a novel combination of qualitative and quantitative methods. In addition, BETTER aims to be highly applicable to the Viennese and Lower Austria settings by using real-world data from these regions and involving local stakeholders and citizens. Using simulations to modify the decisions made by policymakers during the pandemic, we can evaluate the potential impact of alternative choices.

Project: Develop a digital service to improve care and quality of life in patients with Rheumatoid Arthritis (Eurostars-2 CoD 13)

Funding: Die Österreichische Forschungsförderungsgesellschaft – FFG

Duration: 01.11.2020–31.12.2023 (38 months)

Team members (OR): Erika Mosor, Valentin Ritschl, Tanja Stamm

Partner: DAMAN, dwh, PI-BFH

Project description: Rheumatoid Arthritis (RA) is a chronic autoimmune disease that affects more than 3 million people in the EU and is a significant burden on society. Digital health technology, as a complement to traditional care, offers an excellent opportunity to provide continuous, cost-effective and timely support to patients, promote behavioral changes, improve Quality of Life (QoL), and optimize treatment. 86% of people with RA agree that RA self-management apps can be beneficial, but the lack of high-quality and scientifically validated apps has been demonstrated in several studies. The project aims to develop a new generation of digital health tools — a smartphone app — to help people with Rheumatoid Arthritis (RA). An algorithm-driven digital platform is designed to support patients’ self-management of their disease and to improve the collaboration between patients and healthcare professionals. RB4.0 is developed and clinically validated with patients, clinicians, researchers and private stakeholders to improve patient’s well-being, optimize treatment efficiency and reduce healthcare costs.


Results: Ongoing project.

Conclusions: Ongoing project.


Patient-Reported Outcome Measures für vulnerable Bevölkerungsgruppen mit rheumatischen und muskuloskelettalen Erkrankungen

Um eine gute medizinische Versorgung von Menschen mit rheumatischen und muskuloskelettalen Erkrankungen gewährleisten zu können, bedarf es einer guten und vollständigen Erhebung aller Probleme und Schwierigkeiten im Leben von Menschen, die mit einer solchen Erkrankung leben. „Patient-Reported Outcomes“ (PROs) werden definiert als Informationen über den Gesundheitszustand von Patient:innen, welche von diesen selbst berichtet werden. Für die Erhebung dieser Outcomes existieren verschiedenste Instrumente und Fragebögen, die als Patient-Reported Outcome Measures (PROMs) bezeichnet werden.

Bis heute wurde nicht untersucht, ob Messinstrumente zur Erhebung patient:innenberichteter Outcomes, die in der Rheumatologie zum Einsatz kommen, auch die Probleme und Schwierigkeiten von vulnerablen Patient:innengruppen erfassen. Diese sind möglicherweise mit anderen Situationen bzw. zusätzlichen Herausforderungen im Alltag konfrontiert als andere Patient:innengruppen. Die im Zuge der Studie entwickelten Empfehlungen zur umfassenden Erhebung von Gesundheitsdaten vulnerabler Patient:innengruppen in der Rheumatologie können Gesundheitsdiensteanbieter:innen dabei unterstützen, die Sichtweise vulnerabler Gruppen vermehrt in die Behandlung und Forschung einzubeziehen.

In dem Projekt „Patient-Reported Outcome Measures für vulnerable Bevölkerungsgruppen“ untersuchen Personen mit rheumatischen Erkrankungen und Migrationshintergrund, geringer Gesundheitskompetenz, Lernschwäche oder fortgeschrittenem Alter, Betreuungspersonen und Patient:innenvertreter:innen gemeinsam mit Forscher:innen, ob die in der Rheumatologie routinemäßig verwendeten PROMs auch das abdecken, was aus der Sicht vulnerabler Patient:innengruppen wichtig ist. Dazu werden Interviews und anschließende Workshops durchgeführt.

Duration: 01.06.2022–31.08.2023

Project leader: Erika Mosor, Tanja Stamm

Funding: Dieses Projekt wurde im Rahmen des zweiten Patient and Public Involvement and Engagement Call des Open Innovation in Science (OIS) Centers der Ludwig Boltzmann Gesellschaft finanziell unterstützt.

Project: Early Career Network for Health Outcomes Research & Management (ECHORM)

Funding: None

Duration: Open

Team members (OR): Maisa Omara, Preston Long, Yuki Seidler, Tanja Stamm

Partners: Partnering with renowned international experts and partners is in process.

Background: The interest in outcomes research has grown substantially in the last years. Especially, the area of patient-reported outcomes and valued-based care. However, no international network for early career researchers and professionals that could foster collaboration currently exists. Therefore, we decided to found the Early Career Network for Health Outcomes Research & Management (ECHORM). This is a unique initiative started at the Medical University of Vienna together with renowned international partners. ECHORM aims to support young and early career professionals and researchers to become the future leaders in the fields of outcomes research and value-based care in many countries around the world. Additionally, it aims to contribute to the development of solidarity-based value-based healthcare systems across Europe and beyond. ECHORM will bring together professionals with overlapping interests as well as creating an attractive area for early career researchers and professionals/managers to grow. Planned activities include a mentorship programme for early-career ECHORM members guided by renowned international experts in the field. ECHORM will thus finally lead to better health outcomes for patients.

Project: Outcomes in osteoarthritis of the temporomandibular joint

Funding: not applicable

Duration: May 2019–May 2022

Team members (OR): Shiva Shayestehpour, Tanja Stamm

Background: Osteoarthritis is a degenerative chronic disease associated with damage of the articular cartilage and changes of subchondral bone. The temporomandibular joints (TMJs) are subjected to substantial mechanical loading during mandibular function as well as parafunction and undergo lifelong articular remodeling. Altered function can lead to TMJ overloading, which is one of the main causes of osteoarthritis. The current understanding of the prevalence of TMJ osteoarthritis based on clinical evidence in the general population is relatively high with an estimated 8–16 % of the population. This can result in a significant impact on the quality of life of patients since it is well recognized that oral disease and disorders result in experiences of pain along with negative impact on peoples’ daily oral functions, self-esteem, general well-being and social activities. Given the limited understanding of its pathogenesis and the low healing potential of avascular cartilage, no effective therapy is available for restoring the structures of TMJ with progressive osteoarthritis. It is imperative to diagnose and treat the patients with TMJ osteoarthritis with the most efficient treatment modalities available as early as possible. Furthermore, considering the fact that patient-reported chronic pain being the most common clinical symptom of TMJ osteoarthritis, especially during the early stages of the disease, there appears to be urgency in the assessment of the current patient-reported protocols for the improvement of outcomes in such patients. Additionally, the current study aims to determine the prevalence of TMJ osteoarthritis among the patients included in the better life in osteoarthritis registry (BLOAR). Results from the current research would aid health care professionals to have better understanding towards early diagnosis of TMJ osteoarthritis as well as its treatment. The data collected from the current research would assist in the analysis of the accuracy of currently available patient-reported instruments which can applied clinically for assessment of patients with TMJ osteoarthritis.

Methods: Systematic literature review, Delphi study with international experts, qualitative study with interviews and/or focus groups, advanced and extended data analysis of the Austrian osteoarthritis registry.

Results: Ongoing project

Conclusions: Ongoing project

Project: NEPHRO Sex Differences

Funding: FWF

Duration: April 2019–April 2022

Team members (OR): Anna Bösendorfer, Tanja Stamm

Further team members: Manfred Hecking, Eva Schernhammer, Robin Ristl, Mariella Gregorich, Martin Posch, Carolin Berner, Isabella Exner, Sabine Schmaldienst, Emanuel Zitt, Karl Lhotta

Background: The project “NEPHRO sex differences” is part of the FWF-funded project “FWF Sex Differences” (KLI 754-B) and focusses on the sex-specific differences regarding the identification and treatment of kidney diseases. There is an underrepresentation of women regarding renal replacement therapy. The project aims of OR will cover the determination of sex-specific differences in decision-making of doctors, health professionals and patients with end-stage renal disease with regards to renal replacement therapy initiation and the exploration of sex-specific differences of socio-economic and environmental factors in how patients are dealing with the health condition (and/or comorbidities) in daily life and the decision-making process of renal replacement therapy initiation. In addition, the qualitative findings will be compared with existing patient-reported outcomes and the researchers will investigate whether these instruments cover the perspectives of women and men.

Methods: Mixed-methods approach including semi-structured interviews and a survey. The study will be conducted in different nephrology centres in Austria.

Results: Ongoing project.

Conclusions: Ongoing project.

Project: CCB – Culture of Care Barometer

Funding: European University Hospital Alliance (EUHA)

Duration: 2019–2021

Team members (OR): Margaret Renn Andrews, Tanja Stamm

Background: The European University Hospital Alliance is composed of nine of the leading university hospitals in Europe. Alliance members are collaborating to foster excellence and innovation in healthcare, research and education to improve quality of care at a European level. One of the priority areas for the Alliance is the transition towards more person-centred care, implementation of person pathways and measuring outcomes that matter to patients – this is the focus of the Learning In ValuE (LIVE) working group. As part of this transition to value-based healthcare, Alliance members are researching evaluation tools to gather data on workplace and team culture and function.

Previous analyses have indicated that there is a link between toxic workplace culture and adverse patient outcomes. Alliance member King’s Health Partners (London) developed and are using a questionnaire to measure broad organizational culture markers, the Culture of Care Barometer (CCB). Alliance members in Spain (Vall d’Hebron Barcelona Hospital Campus) and the Netherlands (Erasmus MC) have translated the CCB and are testing its application in their organization.

Methods:  Together with Alliance member Charité – Universitätsmedizin Berlin, members of the OR team will translate and culturally adapt the CCB into German and validate the translated version. A second goal is to link the CCB to patient outcomes in one or more active disease teams, which will allow the Alliance to scientifically measure the relationship between workplace culture and patient outcomes.

Results: Ongoing project.

Conclusions: Ongoing project.

Project: The Better Life in Osteoarthritis Registry – BLOAR

Funding: Ludwig Boltzmann Cluster for Arthritis and Rehabilitation

Duration: 2017–Present

Team members (OR): Valentin Ritschl, Siniša Štefanac, Maisa Omara, Tanja Stamm

Team members (LBCAR): Valerie Duxneuner-Nell, Martin Gaisberger, Günter Steiner

Background: Osteoarthritis (OA) is recognized as the health condition with the highest burden within the musculoskeletal group of diseases. Globally, OA is estimated to account for 9.6% of men and 18% of woman over the age of 60. OA leads to pain, impairment of physical function and limitations in the activities of daily living. Therefore, the impact of OA on quality of life can be very high and crucial.

Aim: is to establish a multi-center, longitudinal, observational, prospective cohort of patients with Osteoarthritis (OA) in form of a registry to act as a nucleus for a reliable unified database for the prevention, control and treatment of OA. We aim to include more than 8000 patients within the next ten years.

Methods: patients aged ≥ 18 years visiting one of the participating centers and diagnosed with OA affecting any joint are eligible to participate.

Results: A basic core module is performed at all the participating centers for each patient. In addition, every center can choose to perform any of the additional expansion modules (oral health, imaging, and biomarker modules) according to their preference and available resources. To date ten centers including (rehabilitation, outpatient clinics, private sector, and orthopedic hospital) are participating in the registry. Data from the registry will describe a cohort of osteoarthritis patients in Austria including (e.g., demographics, functional ability, quality of life, biomarkers, and progress of the disease). Moreover, analytical statistics can give insights about the relationship between osteoarthritis and other factors (e.g., oral health, women’s health, modifiable and non-modifiable risk factors).

Conclusions: Ongoing project. BLOAR is the first Austrian multicenter registry for OA and it will create a reliable database for further OA research and interventions. In addition, it could provide a whole multidisciplinary approach when managing an OA patient.

Completed Projects

Project: Mobile Patient-Centered System to Improve Drug Trials and Care of Older-Adults with Rheumatic Diseases (AAL 2020)

Funding: Die Österreichische Forschungsförderungsgesellschaft – FFG

Duration: 01.04.2021–31.07.2023 (28 Monate)

Team members (OR): Nadja Kartschmit, Erika Mosor, Tanja Stamm

Partners: Pryv, RAFFEINER, AICOS, Devision12

Project description: Fifty-six per cent of the adult population suffers from a rheumatic condition, and these numbers increase sharply with age. The high prevalence of rheumatic conditions in the (growing) elderly age- group is likely to make irregular biannual appointments even more distant, thus affecting patient care. In addition, with six months between appointments, it is likely that relapses between visits are already being missed, thus inadequately representing patient’s experience. Electronic Patient Reported Outcomes Measures (ePROMS) had had been developed to support clinicians with more informative outcomes from the patient’s perspective. COTIDIANA is developing a mobile solution to efficiently collect PROMs and sensor data to support clinical care and drug trials for older adults with rheumatic conditions, collecting data on the patient’s condition and treatment. Patients use an app on their smartphones to report their experiences, symptoms, functioning and quality of life. Using sensors and protocols built into the smartphone, we objectively record digital endpoints related to hand dexterity (as an indicator of functional or disease-related activity), gait and physical activity (as an indicator of mobility, fatigue, and pain), and social participation (as an indicator of mental health and well-being).

Methods: –

Results: Ongoing project.

Conclusions: Ongoing project.

Project: The mental Health eXperience; Indication – Intervention – Experience

Funding: AAL-Programm

Duration: 01.03.2020–01.03.2023

Team members (OR): Romualdo Ramos, Tanja Stamm

Partners: Austrian Institute of Technology (coordinator)

Background: Mental health interventions in the workplace have gained momentum in the last years and new technologies can help to buffer stress and to promote well-being. This becomes particularly relevant within the context of an aging population. The mHealthINX aims to support 50+ employees in the prevention of stress-related conditions such as depression, anxiety, and cardiovascular diseases. mHealthINX will provide an innovative system with mental health (MH) assessments, and MH promoting features (e.g. cognitive training, mindfulness, etc), aimed to foster employees’ wellbeing. The mHealthINX will offer a unique solution, able to address MH issues in a holistic manner, starting with (1) self-based indication (i.e., stress recognition through the changes in heart rate variability (HRV)), (2) personalized and context-sensitive intervention (i.e., App-based personalized recommendations), (3) and a novel intervention experience including immersive Virtual Reality (VR) stress-reducing environments and VR-based personalized trainings. The training will be developed in close and constant exchange with end-users. Furthermore, the solution will be clinically tested and evaluated.

Methods: Mixed-method study, including focus groups and interviews for solution development, qualitative process evaluation and a randomized controlled trial (RCT) to evaluate the impact of the solution on health-related outcomes.

Results: Ongoing project.

Conclusions: Ongoing project.

Project: “DAPAS – Deploying AAL Packages at Scale”

Funding: Active Assisted Living (AAL) Joint Program of the European Union/FFG (Austria Research Promotion Agency)

Duration: 2018–2021

Team members (OR): Erika Mosor, Romualdo Ramos, Tanja Stamm

Background: DAPAS addresses the need for a scaled distribution of AAL packages by bringing together the outcomes of two successful AAL projects and combining them with a product on the road to market to form suitable AAL support packages for primary end-users and their carers that can be distributed in a larger scale. The inclusion of all relevant stakeholders is ensured by the well balanced consortium of DAPAS, which includes research, industry and end-users in all work packages. The aim of this study is to evaluate the usability, acceptance and effect of the DAPAS support system that provide multidimensional support in daily life of older adults.

Methods: We will conduct a mixed-method study including an outcome evaluation (randomized, controlled, multi-center trial and a cost-effectiveness analysis), a product evaluation and a qualitative evaluation of the technical solutions, in three European countries (Austria, Portugal and Luxembourg).

Results: Ongoing project.

Conclusions: Ongoing project.

Project: ReMIND

Funding: Active Assisted Living (AAL) Joint Program of the European Union/FFG (Austria Research Promotion Agency)

Duration: 2018–2021

Team members (OR): Erika Mosor, Tanja Stamm

Background: The ReMIND project aims to enhance the quality of life of patients with mild neuro-cognitive impairments by stimulating the cognitive and physical activity through music, pictures and physical exercises; to evoke positive moods and emotions and to support social interactions. The holistic ReMIND solution is an interactive combination of robot and tablet.

Methods: A mixed method design and a co-creation methodology will be used to develop the functionality of the robot/APP in three European countries (Austria, Romania and Belgium).

Results: Ongoing project

Conclusions: Ongoing project

Project: PIPPI – Platform for Innovation of Procurement and Procurement of Innovation

Funding: EU Horizon 2020 Grant

Duration: December 2018–2021

Team members (OR): Tanja Stamm, Romualdo Ramos, Margaret Renn Andrews

Background: The digital transformation of healthcare asks for the procurement of innovative solutions for which public-private collaborations are essential. These collaborations are often reactive and not fully connected with the needs and specifications of the healthcare professionals. To address this challenge, the demand side should be in the driver seat in innovation procurement for healthcare. Therefore, the PIPPI project will create a cross-border Community of Practice of European university hospitals that will bring together experts from the demand and supply side to identify common clinical needs for digital healthcare solutions and procurement of innovation knowledge. The consortium includes 7 major European university hospitals offering expertise on digital healthcare, patient-centered care and procurement with the ultimate aim to solve shared clinical challenges.

The project will engage relevant stakeholders involved throughout the innovation procurement process at a regional, national and European level. The consortium with its network partners, such as industry and payers of healthcare, will gather best practices and develop structural capital and tools around procurement that will be shared through a knowledge brokerage platform on an European level by actors involved in, planning or interested in procurement of innovation. The consortium will identify major clinical needs from 10 university hospitals spread around Europe and compile a short-list of challenges that are suitable to solve with digital solutions and for procurement of innovation. This shortlist will be the base for a feasibility study and preparation of a concrete cross-border PCP.

To secure the future use of project results, including long-term assessment and monitoring of outcomes, the PIPPI project will develop a business and implementation plan with the ultimate aim to improve patient outcome, decrease healthcare costs, create growth for European life science industry and create new mar


1) Create a cross-border Community of Practice that will bring together experts from the demand and supply side to identify common clinical needs for digital health and care services and procurement of innovation knowledge.

2) Establish an open-access web-platform for multi-stakeholder communication and collaboration.

3) Complete a feasibility study and preparation of a cross-border PCP (Pre-Commercial Procurement) for digital health services, based on identified health care need

4) Establish an implementation and maintenance plan and development of structures and processes to ensure that the value of the PIPPI activities continues after the durati

Results: Ongoing project.

Conclusions: Ongoing project.

Project: Empowered2work

Funding: EULAR (European League Against Rheumatism)

Duration: 2018–2020

Team members (OR): Erika Mosor, Valentin Ritschl, Tanja Stamm

Background: People affected by rheumatic and musculoskeletal diseases (RMDs) often have problems in participating in work. They experience internal and external barriers to work, like pain and fatigue affecting their ability to work, being unable to carry out duties due to physical limitations, needing more breaks and longer rests and sometimes also specific spatial obstacles at work. Preventive interventions are needed to support participation in work and to avoid presenteeism and absentism, as well as the transition from work to work instability and work disability. With this project, we aim to develop an easily accessible, low-threshold, multi-faceted education and training program focusing on health promotion and ergonomic issues in the workplace for people with RMDs, called “Empowered2work” and to educate interested people with RMDs as trainers/multipliers to support other people with RMDs across Europe in their work or education.

Methods: Development of the workshop content and the educational material will be based on the results of a survey distributed to people with RMDs and selected for participation in the one-day workshop that will take place at the Medical University of Vienna. Evaluation of the intervention will take place 4–6 months after the workshop.

Results: Ongoing project.

Conclusions: Ongoing project.

Project: YP-PROMs – perspectives of young people with inflammatory arthritis on patient reported outcome measures.

Funding: This project is funded by EULAR (European League Against Rheumatism).

Duration: 2018–2020

Team members (OR): Erika Mosor, Valentin Ritschl, Tanja Stamm

Background: Although patient-reported outcome measures (PROMs) are extensively used in clinical practice and research, it is unclear whether the most commonly used instruments adequately cover the perspective of young people with chronic inflammatory arthritis. This study was undertaken to investigate whether the aspects important to young people with inflammatory arthritis are sufficiently covered by the PROMs that are widely used in clinical practice and research.

Methods: A qualitative, multicentre focus group interview study was conducted in Austria, Croatia, Italy and the Netherlands in order to inform a EULAR-funded taskforce. Three groups of young people (aged 18-35 years) with either (1) rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA) and Still's disease, (2) psoriatic arthritis (PsA), or (3) axial spondyloarthritis (SpA) were interviewed at each centre. The interview guide was based on the WHO International Classification of Functioning, Disability and Health (ICF) to comprehensively cover all aspects of functioning in daily life [1]. It also included questions on the perspectives and views of the participants on selected PROMs (Pain scales, Patient Global Assessment [PGA], FACIT Fatigue Scale, The Health Assessment Questionnaire [HAQ]/Bath Ankylosing Spondylitis Functional Index [BASFI], and The 36-Item Short Form Health Survey [SF-36]). All interviews were conducted by trained local investigators, audio-recorded, transcribed verbatim, and analysed using a modified form of ‘meaning condensation’ [2]. During a face-to-face meeting of the task-force members, the concepts were reformulated and organized into a scheme of higher and lower-level concepts.

Results: Ongoing project

Conclusions: Ongoing project

Project: Training support in every day life after rehabilitation of hip-total-endo-prosthesis – TRIMOTEP

Funding: FFG (Austria Research Promotion Agency)

Duration: August 2017–July 2020

Team members (OR): Claudia Oppenauer-Meerskraut, Tanja Stamm

Partners: FH Johanneum Graz (Coordinator), Neurohr Bytes Software e.U., ATOS Österreich and Medical University of Vienna

Background: Currently individuals with hip-total-endo-prosthesis (H-TEP) get an exercise order to work out independently by their own to increase (A) strength, (B) balance and (C) the capability of reaction. These elderly people have to approach slowly to their limits due to their everyday requirements without any further support of a health expert. Perhaps insecurities or overestimations lead to wrong physically load or even to a fall. This will have further long and unpleasant implications with high costs of the social insurance carrier. In addition, people in rural areas have less health infrastructure to be treated and cared. Aim of the project is to support persons with H-TEP training during and afterwards of rehabilitations in their own homes using an augmented reality (AR) exer-game, with the head mounted display HoloLens from Microsoft. The exer-game can be adapted to the patients’ individual needs and to the demands of physiotherapists and physicians. Besides the development of the AR exer-game the efficacy of the home training will be investigated in the project.

Methods: The process and results of the AR exer-game are evaluated using a participatory mixed-methods approach.

Results: Ongoing project.

Conclusions: Ongoing project.

Project: Green- and free space design as a dynamic development field for quality of life through social innovations.

Funding: Klima und Energiefonds

Duration: February 2018–June 2020

Team members (OR): Claudia Oppenauer-Meerskraut, Tanja Stamm

Partners: Stadt St. Pölten (Koordinator), Verein SmartPölten, WPU Wirtschaftspsychologische Unternehmensberatung, Green4Cities, dieTREIBER, akaryon, GartenBox, B-NK GmbH, Prof. Dr. Bernhard Rupp, Kanzlei Mag. Dietmar Schneller-Scharau, and Produktionsraum Aschauer Film.

Background: The project “Smart Pölten” is based on the preceding study “Smart&GreenLivingLab” (FFG project 855516) and focusses consequently on creating social innovations with a broad social impact. The outcome of this consequent bottom-up approach will be the development of green urban islands implementing the following elements: (a) mobile urban pocket gardening, (b) concepts for an “eatable city”, (c) green walls/green chattels, (d) a climate-research-laboratory for children plus (e) a collection for free initiatives, which support the idea of a smart green city. The development of a model and the evaluation of the social impacts regarding the specific elements in the green and open spaces as well as project related clima monitoring complete the approach of social science.

Methods: Mixed-methods approach.

Results: Ongoing project.

Conclusions: Ongoing project.

Project: Evaluation of the Wiener Schulfruchtprogramm

Funding: Wiener Gesundheitsförderung (WiG)

Duration: 2018–2019

Team members (OR): Erika Mosor, Tanja Stamm

Background: Since February 2015, the Wiener Schulfruchtprogramm (Vienna School Fruit Program) has been implemented by the Vienna Health Promotion Agency (Wiener Gesundheitsförderung – WiG) at all public compulsory schools of the City of Vienna. The programme consists of two pillars: the weekly delivery of fruit and vegetables and the development and implementation of accompanying educational measures. The purpose of the process and results evaluation is to support project implementation and management as well as the final verification of the achievement of the project objectives.

Methods: Based on the results of a one-day stakeholder workshop, the final evaluation design was developed. We conducted semi-structured expert interviews with representatives of cooperation partners and focus groups with parents. In addition, a survey was conducted among school principals and pedagogues from schools who had not yet taken part in accompanying educational measures of the Vienna School Fruit Programme. Based on the results of the focus groups, a questionnaire was developed for the target group of legal guardians.

Results: Ongoing project

Conclusions: Ongoing project

Project: Euro-TEAM (Towards Early diagnosis and biomarker validation in Arthritis Management) – Perspectives and information needs of people who underwent predictive tests for rheumatoid arthritis.

Funding: This work was partly supported by the European Union’s FP7 Health Programme under the grant agreement FP7-HEALTH-F2-2012-305549 (EuroTEAM); by the Innovative Medicines Initiative (IMI) Joint Undertaking under grant agreement no 777357 (RTCure) and the Riksbankens Jubileumsfond (The Swedish Foundation for Humanities and Social Sciences) under Grant M13-0260:1‘Mind the Risk’.

Duration: 2013–2017

Team members (OR): Erika Mosor, Tanja Stamm

Background: Little is known about the experiences, values and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs.

Methods: Little is known about the experiences, values and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs.

Results: Thematic saturation was reached in 34 individuals (76 % female; 24 [71 %] with arthralgia and 10 [29 %] asymptomatic individuals). Thirty-seven codes were summarized into four themes, namely (i) decision making around whether to undergo initial predictive testing, (ii) willingness to consider further predictive tests and/or (iii) preventive interventions, including medication and (iv) varying reactions after receiving a positive test result. Individuals with arthralgia were more likely to be willing to take preventive action, undergo further testing, and experience psychological distress than asymptomatic individuals. All participants expressed the need for tailored, lay-understandable information.

Conclusions: Individuals at risk of RA are currently the subjects of research aimed at developing better predictive strategies and preventive approaches. Their perceptions and needs should be addressed to inform the future development of interventions combined with education.

Project: Moving Generations

Funding: Wiener Gesundheitsförderung (WiG)

Duration: 2014–2017

Team members (OR): Erika Mosor, Omara Maisa, Valentin Ritschl, Tanja Stamm

Background: Limited evidence exists for intergenerational interventions to promote health and well-being in older adults and preschool children. We therefore aimed to evaluate the implementation, feasibility and outcome of an intergenerational health promotion program based on psycho-motor activity.

Methods: A multi-center mixed-methods study with preschool children and older adults as equivalent target-groups, and professionals and parents as additional informants was conducted. The study included a needs assessment, a pilot phase with a formative process evaluation and a subsequent rollout phase to evaluate the outcome and the adapted processes of the intervention program. To analyze the qualitative data, a modified form of the framework method was applied. Quantitative data were collected with a time-sampling method and were analyzed by using descriptive and inferential statistical procedures.

Results: 196 participants (93 older adults, 78 children, 13 professionals and 12 parents) from 16 institutions (eight kindergartens and eight geriatric facilities) were included in the study. The qualitative process evaluation revealed several aspects for improvement of the intervention program. Well-being as measured by observing spontaneous intergenerational contacts (p<0.001) and facial expressions (effect size r=0.34; p<0.001) showed a significant increase between the rollout baseline and follow-up assessments.

Conclusions: Professionals in geriatric institutions and kindergartens could facilitate interactions between members of the different generations by offering an intergenerational intervention program based on psycho-motor activities in the future.

Project: SParra Questionnaire

Funding: This project was funded by EULAR (European League Against Rheumatism).

Duration: 2015–2017

Team members (OR): Erika Mosor, Tanja Stamm

Background: A wide range of symptoms can be present in individuals at risk of rheumatoid arthritis, including extra-articular symptoms. These symptoms need to be assessed as they can be severe and disabling for the individuals. The aim of the study was to describe the development and assess the psychometric properties of the novel ‘Symptoms in Persons at risk of rheumatoid arthritis’ (SParra) questionnaire in individuals at risk of rheumatoid arthritis (RA) and to quantify their symptoms.

Methods: The questionnaire items were derived from a qualitative study in patients with seropositive arthralgia. The questionnaire was administered to 219 individuals at risk of RA on the basis of symptoms or autoantibody positivity: 74% rheumatoid factor and/or anticitrullinated protein antibodies positive, 26% seronegative. Validity, reliability and responsiveness were assessed. Eighteen first degree relatives (FDR) of patients with RA were used for comparison.

Results: Face and content validity were high. The test-retest showed good agreement and reliability (1 week and 6 months). Overall, construct validity was low to moderate, with higher values for concurrent validity, suggesting that some questions reflect symptom content not captured with regular Visual analogue Scale pain/well-being. Responsiveness was low (small subgroup). Finally, the burden of symptoms in both seronegative and seropositive at risk individuals was high, with pain, stiffness and fatigue being the most common ones with a major impact on daily functioning. The FDR cohort (mostly healthy individuals) showed a lower burden of symptoms; however, the distribution of symptoms was similar.

Conclusions: The SParra questionnaire has good psychometric properties and can add information to currently available clinical measures in individuals at risk of RA. The studied group had a high burden and impact of symptoms. Future studies should evaluate whether SParra data can improve the prediction of RA in at risk individuals.

Project: Train and Win

Funding: FFG (Österreichische Forschungsförderungsgesellschaft) 

Duration: ongoing

Team members (OR): Claudia Oppenauer-Meerskraut, Tanja Stamm

Partners: AIT Austrian Institute of Technology GmbH, WPU Wirtschaftspsychologische Unternehmensberatung GmbH, Verband Mühlviertler Alm, Verein für Regional- und Tourismusentwicklung, Fachhochschule St. Pölten ForschungsGmbH, LifeTool gemeinnützige GmbH.

Background: Eine hohe Lebensqualität im Alter aufrechtzuerhalten ist ein erstrebenswertes Ziel. Medizinischen Studien zufolge wird dieses Ziel bei jedem Zweiten ab dem 60. Lebensjahr durch erste Bewegungseinschränkungen und ab dem 70. Lebensjahr durch deutliche Mobilitätseinschränkung verhindert. Als Folge daraus verschlechtern sich die wahrgenommene Lebensqualität und Lebensfreude deutlich.

Das Forschungsprojekt “FitDaheim” will an diesem kritischen Lebenspunkt ansetzen. Es wird ein auf Prophylaxe abzielendes physio- und ergotherapiebasiertes Trainingsprogramm entwickelt, das Bewegung und Fitness im Alter fördern und die persönliche Motivation dazu erhöhen soll.

Das Trainingsprogramm wird zu Hause vor dem eigenen Fernseh-Gerät stattfinden und durch einen virtuellen Trainer angeleitet werden. Dabei werden Fitnessübungen vorgeschlagen und vom virtuellen Trainer vorgezeigt. Mit Hilfe von Sensoren kann überprüft werden ob der Trainierende die Übung richtig ausführt. Der Trainer sorgt dabei nicht nur für die Korrektheit der Übungsausführung sondern gibt Tipps zum gesunden und lebensbejahenden Lebensstil.

FitDaheim ist ein von der österreichischen Forschungs-Förderungs-Gesellschaft finanziertes Projekt mit sechs verschiedenen Partnern aus der Wirtschaft und Wissenschaft.

Methods: Mittels eines partizipativen “Mixed-Methods”-Ansatzes werden die Prozesse und Ergebnisse dieses Projekts evaluiert.

Results: Ongoing project.

Conclusions: Ongoing project.

Project: The perspective of patients on non-adherence to treatment in rheumatoid arthritis – NO-RA

Funding: AbbVie 

Duration: Ongoing 

Team members (OR): Tanja Stamm, Valentin Ritschl

Partners: Univ.-Prof. Dr. Winfried Graninger (Medical University of Graz)

Background: Low adherence to medicines is an important issue in rheumatology because up to 40 to 80 % of patients with chronic diseases, such as rheumatoid arthritis (RA), do not take their medications as prescribed. RA is a chronic autoimmune disease of unknown aetiology characterised by destructive synovitis and subsequently loss of functioning in daily life. To address functioning, non-pharmacological treatment – in addition to medicines – is essential in RA. Non-pharmacological methods may cause even lower adherence rates compared to medicines because they often include life-style modifications and changes of behaviour. In both areas, non-adherence leads to a suboptimal clinical benefit.

While non-adherence is a well-known phenomenon, it is difficult to measure. Patient-reported outcomes measures and instruments for (non-)adherence in RA exist. However, these instruments (because they are mainly patient-reported) may be expected to cause a serious bias, since patients are commonly asked to fill in such questionnaires after having been informed about the purpose of the current study/audit. Furthermore, it is ethically questionable and not feasible due to data protection aspects to constantly monitor adherence of patients, e.g,. by obtaining data from health insurances or from pharmacies. If different medicines are included, it is also difficult to measure levels of biomarkers because each medication would require different markers to be assessed. Levels of potential markers, such as TNF-alpha in RA are also influenced by several other factors than only certain medicines. Furthermore, adherence or non-adherence strongly relates to decisions, motives and values of patients. Qualitative research has the potential to explore such perspectives, values and needs of people from an “inside” perspective.

The aim of this project is to develop a list of factors which are facilitators or barriers for non-adherence to medicines and non-pharmacological treatment from the perspective of patients with RA.

Methods: A mixed-methods study with descriptive statistics and individual semi-structured interviews is performed, followed by a linking exercise, to explore whether the currently used outcome measures and instruments regarding non-adherence to medicines cover the concepts derived from the qualitative data.

Results: Ongoing project.

Conclusions: Ongoing project.