Projektname
Development of an eHealth-powered self-management intervention delivered by and for patients with systemic sclerosis

Co-Projektleitung
Agnes Kocher
Dunja Nicca

INS-Projektteam
Agnes Kocher
Michael Simon

Externe Projektpartner
Dr. Dunja Nicca, Institute for Epidemiology, Biostatistics and Prevention, University of Zurich, Zurich, Switzerland;
Dr. Christine Merzeder, Swiss Scleroderma Patient Association, Switzerland;
Prof. Brett Thombs, Faculty of Medicine, McGill University, Montreal, Canada;
Marie-Eve Carrier, Lady Davis Institute for Medical Research, Montreal, Canada;
Marieke Neyer, University of Heidelberg, Germany
Prof. Andrew A. Dwyer, Boston College and Massachusetts General Hospital, Massachusetts, U.S.A;
Prof. Dr. med. Tanja Lange, Klinik für Rheumatologie und klinische Immunologie, Universität Lübeck, Germany
Isabelle Steeb, Rheumaliga Schweiz, Switzerland
Birgit Barten, Deutsche Rheumaliga, Bonn, Germany
Michael Zauner, Medical University of Vienna, Division of Rheumatology, Austria

Ort der Datenerhebung
- Schweiz
- Deutschland
- Österreich

Laufzeit
ab 2023

Projektbeschreibung
Background
Building on a contextual analysis, the Swiss MANagement Of Systemic Sclerosis (MANOSS) project aims to develop a rare disease chronic care model for patients living with SSc and their families (5). Applying an implementation science approach and involving a broad range of relevant stakeholders (i.e., national and international experts such as individuals living with SSc, their families, healthcare providers, policy makers and chronic care experts), the first phase of the MANOSS project (i.e., the contextual analysis) identified four target areas for system change in Switzerland (3, 4). All of which are particularly important for the reorganization of care toward an integrated SSc care model facilitated by electronic health (eHealth): (1) shared and informed decision-making; (2) self-management and psychological support; (3) complex care coordination; and (4) monitoring of integrated care improvements.

Objective
In this project, we will develop, implement and evaluate an eHealth-powered self-management intervention for people living with SSc delivered by national patient organizations (i.e., the MANOSS-SPIN-SELF intervention). MANOSS-SPIN-SELF will be based on the existing online, self-guided program SPIN-SELF, with the aim of improving access to specialized, disease-specific support and outcome measurement at a national level.

Methods
The MANOSS-SPIN-SELF intervention development, implementation and evaluation will consist of four interrelated steps, using theoretical foundation and scientific methods from behavioural, implementation and computer science. Importantly, the MANOSS-SPIN-SELF intervention development will consist of broad stakeholder involvement, including the Swiss Scleroderma Patient Association (SVS), national healthcare providers, as well as international experts, such as the Scleroderma Patient-centered Intervention Network (SPIN).

Steps 1 and 2 will focus on the planning of intervention content and delivery mode and involve project partners from Switzerland, Germany and Austria. Moreover, we will cooperate with the SPIN  Network who developed the online, self-guided, self-management intervention including 9 modules (SPIN-SELF Program) available in English and French language. SPIN-SELF was designed based on key tenets of self-management skills that have been incorporated in successful self-management programs for chronic diseases, including problem solving, decision making, resource utilization, forming a patient – health care provider partnership, and taking action. Patient collaborators jointly designed the SPIN-SELF Program with SPIN investigators and input on modules, content, layout, and program navigation was obtained from focus groups with people with SSc and SPIN’s Patient Advisory Board. However, findings of a recent randomized feasibility trial highlighted that the usage of the online self-guided format of the SPIN-SELF Program needs to be improved.

Therefore, we will translate and systematically adapt the SPIN-SELF program together with national SSc patient associations from German-speaking countries and other relevant stakeholders (i.e., co-creation with end-users). During this process we will define the structured peer support provided by the national patient organisations (one-to-one or group-based) and optimal delivery mode (human/technology) and dose of peer-guidance of MANOSS-SPIN-SELF. Moreover, we will develop a set of critical outcomes for the monitoring of the patient self-management strategies and service delivery.

During the steps 3 and 4 we will implement and evaluate the MANOSS-SPIN-SELF intervention together with the SVS. We will concentrate on the Swiss context (German- and French-speaking SVS members) in a first phase and develop contextually adapted implementation strategies to facilitate the uptake and sustainability of the intervention. The evaluation will combine multi-method strategies to likewise assess intervention, health service and implementation outcomes and create a blueprint for the implementation of MANOSS-SPIN-SELF in other countries.

Clinical and scientific relevance
In people living with rare and chronic diseases such as systemic sclerosis (SSc), both self-management and peer support have a strong potential to improve health literacy, self-efficacy for disease management, coping skills and illness-related emotions, as well as health-related quality of life and general well-being. By focusing on self-management and psychological support as well as the monitoring of intervention outcomes, MANOSS-SPIN-SELF aims to improve patients’ self-management skills as well as impact positively on informed and shared decision making with healthcare providers and the complex care coordination of SSc.

Multilevel barriers often hinder the implementation of interventions from trial world into routine clinical practice. This research project is informed by the MANOSS contextual analysis and generously supported by the SVS who will contribute to co-designing the MANOSS-SPIN-SELF intervention and defining context-specific implementation strategies for its successful implementation in Switzerland. The findings will guide future implementation of MANOSS-SPIN-SELF in other German- and French-speaking countries.