Projects

The established and validated self-management coaching program “Living well with COPD” has been shown to improve health status and reduce hospital admissions in patients with chronic obstructive pulmonary disease (COPD). As part of a pilot project, the Swiss Lung Association has integrated the program for the first time in the already existing offers of seven Cantonal Lung Associations throughout Switzerland from mid 2017 until 2019. The further implementation of the “Living well with COPD” program was supported by Health Promotion Switzerland from January 2019 for the next three years. The aim is to continue offering the program in the seven pilot centers and to implement it in additional Cantonal Lung Associations so that by the end of 2021, 1’200 patients will be participating throughout Switzerland. The EBPI is responsible for the accompanying scientific study of this project and to assess the effectiveness of the program on the level of the COPD patients and the implementation of the program with focus on optimization of the program.

For more information or to participate please visit the project page or
«Selbstmanagement Coaching» (by Lungenliga).

Project lead: Anja Frei
Funding: Gesundheitsförderung Schweiz, Projektförderung Prävention in der Gesundheitsversorgung

This project aims to develop and evaluate a blended education and self-management program for patients with fibrotic interstitial lung disease (FILD). Self-management programs aim to improve disease management for people with chronic illnesses. However, there is no such program for individuals affected by fibrotic interstitial lung disease. The goal of this project is to develop and evaluate a modern, digital training and self-management program for individuals with fibrotic interstitial lung disease, applicable in both inpatient and outpatient rehabilitation or care. The research project consists of three sub-projects. The first sub-project involves patient and expert interviews and a Delphi study to define the educational and self-management content, using a patient-centered co-development approach. The second sub-project encompasses the development of self-management modules based on the 'ADDIE' design model ('Analysis', 'Design', 'Development', 'Implementation', and 'Evaluation'), with patient-centered testing and feedback loops. In the third part, the complete program, developed using a blended learning approach, will be evaluated. The feasibility regarding treatment-related outcomes (satisfaction, applicability, acceptance, compliance) as well as study-related outcomes (recruitment success, dropouts, etc.) will be tested.
For more information on the project please visit the project website: here
 

Project lead: Anja Frei & Thomas Riegler (ZHAW Winterthur)
Funding: Lungenliga Bern, Forschungsförderung

This project aims to develop and evaluate a digital lifestyle intervention to improve the quality of life targeting individuals with lung cancer in rehabilitation aftercare. Lung cancer is the third most common type of cancer diagnosed in Switzerland. Due to symptoms, cancer treatments, and comorbidities, affected individuals suffer from reduced physical and psychological functioning. This can, in turn, massively restrict their health-related quality of life. Physical activity, a balanced diet, as well as breathing and relaxation exercises can positively influence the quality of life of those affected. However, after discharge from the rehabilitation clinic, there is often a lack of support for integrating a healthy lifestyle into everyday life at home. Digitalization opens new possibilities that can encourage cancer patients to take responsibility for their health and lifestyle. However, digital solutions largely lack a target group-specific design as well as the combination of multiple health-promoting components (potential synergistic effects). Within this project, a mobile application for people with lung cancer following inpatient rehabilitation was developed. The focus of the platform is on physical activity, nutrition, and breathing/relaxation. The development of the platform was guided by a participatory development approach (co-creation). To investigate the effectiveness of the mobile application and explanatory outcomes, a randomized controlled trial (RCT) is conducted. Individuals with lung cancer from various rehabilitation centers in Switzerland are randomly assigned to either the intervention group or the control group. The intervention group participants have access to the mobile application and use it for 12 weeks. The control group participants receive standard care only. The primary outcome is health-related quality of life. Secondary outcomes include physical activity, appetite, risk for low protein intake, body mass index, psychological distress, cancer-related fatigue, and enablement. Explanatory outcomes in the intervention group include usability, acceptability, appropriateness, and feasibility of the intervention, experiences and satisfaction with the intervention, and app usage data.
For more information visit our project website: here
Find our app in the  appstore: apps.apple.com

Project lead: Anja Frei & Prof. Dr. Kai-Uwe Schmitt, Berner Fachhochschule
Funding: Lungenliga Schweiz, Projektforschungsfonds

With an estimated 3'200 deaths yearly, lung cancer is the leading cause of cancer-related death in Switzerland. Every year about 4'300 new lung cancer cases are diagnosed (4’363 in 2015, 4’252 in 2014, 4’293 in 2013). The major risk factor for lung cancer is smoking: incidence and mortality closely follow smoking trends with a time-lag of around 20 – 30 years.

This explains why death rates in Switzerland are declining in men, but increasing in women. Given that lung cancer has a detectable, yet frequently asymptomatic pre-clinical phase with an effective treatment option (i.e. surgery), the effectiveness of early screening methods has been extensively investigated over the last 20 years.
Low-dose computed tomography (LDCT) is a sensitive imaging technique allowing detection of early stage lung cancer. Importantly, an appropriate diagnostic and treatment strategy achieves a reduction in lung cancer-specific and all-cause mortality. The results of the US National Lung Screening Trial (NLST) showed that lung cancer screening significantly reduced lung cancer mortality by 20%.The results of another landmark study, the Dutch-Belgian Lung Cancer Screening Trial NELSON, presented for the first time in September 2018 at the 19^th World Conference on Lung Cancer, demonstrated a 26% reduction in lung cancer deaths. In a smaller subset of women, LDCT screening even reduced mortality by as much as 50%. The NELSON trial is also of key importance since the volume-based approach to assess lung nodules substantially reduced false positive results and associated harms. These developments unambiguously confirm that lung cancer screening has the potential to save lives and our recent micro-simulation study indicated that this is likely to be a cost-effective intervention (around 30’000 Swiss Francs per life year saved). To date, the USA, UK, and Poland are still the only countries where lung cancer screening with LDCT has been or is being implemented following recommendations of various international associations.
In Europe, most countries including Switzerland still await publication of the NELSON study and an updated health technology assessment on which the decision for or against implementation of a lung cancer screening program would be based on. Much of the hesitation arises from the high false positive rate in the NLST trial and potential harms from diagnostic follow-up (e.g. repeated CT scans, as well as CT-guided, bronchoscopic, and surgical biopsies) or treatment.
In addition, although LDCT screening is likely to be cost-effective (which is a relative term), the cost impact (i.e. the absolute cost) of LDCT screening is substantial: Assuming a participation rate of 10% of all eligible persons, the additional annual cost is estimated around 16 Mio Swiss Francs.
This project will address this area of unmet need in Switzerland by exploring the following aims:
(1) To assess the feasibility and financing of a high-quality LDCT lung cancer screening program with quality assurance in Switzerland from the multi-stakeholder perspective of persons eligible for lung cancer screening, health care providers, and the health care system.
(2) If aim (1) is deemed feasible and affordable, to establish standard operating procedures (SOPs) and a quality assurance program for the implementation of a LDCT lung cancer screening program in close collaboration with involved Swiss national stakeholders.

Project lead: Milo Puhan & Thomas Frauenfelder (USZ)
Funding: Swiss Lung Association

Cigarette smoking is the leading cause of preventable death in Switzerland. Recently, electronic nicotine delivery systems (ENDS or vaporizers, also called e-cigarettes) have become popular in smokers who want to switch from tobacco cigarettes to ENDS to reduce their exposure to toxic compounds or to stop smoking. However, it is controversial whether ENDS are in fact useful as a smoking cessation support and what the safety and potential adverse effects of ENDS are. Based on this background, the ESTxENDS randomized controlled trial was developed to test the efficacy, safety and toxicology of ENDS as an aid for smoking cessation. The project started in June 2018 and is led by the University of Berne. It is planned to recruit around 1’200 participants in total at five study sites in Switzerland (University Hospital Berne, University Hospital Lausanne, University Hospital Geneva, Kantonsspital St. Gallen and University of Zurich).
For more information and to participate please visit the project page

Project lead: Anja Frei
Funding: Lunge Zürich, Swiss National Science Foundation, Tabakpräventionsfonds, Krebsforschung Schweiz

Regular exercise testing is recommended for people with cystic fibrosis (CF). In an international multicenter study conducted within the Exercise Working Group of the European Cystic Fibrosis Society (ECFS), we could recently demonstrate that cardiopulmonary exercise testing (CPET) derived variables provide important prognostic information on the combined outcome ‘death or lung transplantation (LTX)’ (Hebestreit et al. AJRCCM 2019). While this retrospective study focused on long-tern outcomes (up to 15 year follow-up), little information is available on the value of CPET outcomes on short-term survival and selection of lung transplant candidates. The planned project aims to assess the short-term (i.e., 2-year) prognostic value of CPET derived parameters in people with advanced lung disease that could potentially add important information to established parameters used for the selection of LTX candidates.

Project lead: Thomas Radtke & Helge Hebestreit

Cystic fibrosis (CF) is the most common autosomal recessive caused by mutations in the gene encoding for the CF transmembrane conductance regulator protein. The life expectancy of people living with CF has increased considerably over the last decades, enabling them to participate in the labour force. Despite improvements in overall life expectancy, CF is a life-limiting disease and characterised by progressive lung destruction that finally leads to respiratory failure. Lung transplantation (LTX) remains the ultimate treatment option to improve the health-related quality of life and survival in carefully selected patients with end-stage CF lung disease. Return to work is recommended for LTX recipients, however, a variety of influencing factors (e.g., medical, psychological, demographic, societal) determine the process of professional reintegration including return to work. This study aims to explore determinants of post LTx employment status in the growing population of adult people with CF in order to support patients with regard to their career choices and to promote the process of return to work following LTX.

Project lead: Thomas Radtke

Human sexuality is a universal part of living and a determinant of quality of life also in elderly people with a chronic illness like COPD. It is time to start communication about sexuality and to address the topic in practice and research.
We recently reported on our development of a COPD specific communication instrument called COSY (COmmunication about SexualitY in COPD) to overcome the communication barriers (publication accepted 2023 Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation JCOPDF). The COSY instrument consists of four tools: A communication leaflet for health care professionals, an application guidance, a pictorial representation of the spectrum of intimacy for health care professionals and an attractive patient information booklet. These tools are available for free in several languages and can be used for practice and research: https://www.lungenliga.ch/de/meta/fachpersonen/fachpublikationen/copd.html

While both patients and health care professionals welcomed the COSY instrument, there is no evidence available yet if it supports communication about sexuality and ultimately positively influences quality of life of people with COPD and other outcomes like physical activity.
To close this knowledge gap, we initiated further project called Holistic wellbeing in COPD: The communication about Sexuality (COSY) – a randomized controlled trial.
Our hypothesis is that the COSY intervention that specifically addresses sexuality improves holistic wellbeing and quality of life in persons living with COPD compared to no intervention, and that linking sexual activity with physical activity increases adherence for long-term physical activity and other patient-relevant outcomes.
The overall objective of this project is to assess the effectiveness of a communication intervention about sexuality on quality of life and other outcomes like physical activity, exercise capacity and health status in people living with chronic obstructive pulmonary disease (COPD).

Project lead: Claudia Steurer-Stey, Kaba Dalla Lana
Funding: Lungenliga Schweiz, Verein Lunge Zürich,  Astra Zeneca, GlaxoSmithKline, Novartis, OM-Pharma