LIFT MCAS: Developing an Intervention to Enhance Quality of Life in People with Mast Cell Activation Syndrome

LIFT MCAS explores and integrates the expertise of healthcare professionals and individuals with lived experience to develop new approaches for improving the quality of life of individuals with mast cell activation syndrome (MCAS).

Factsheet

Schools involved School of Health Professions
Institute(s) Institute for Collaborative Practice and Leadership in Healthcare
Funding organisation Burgergemeinde Bern
Duration (planned) 01.08.2025 - 31.01.2029
Head of project Clémentine Tombez
Project staff Prof. Dr. Martin grosse Holtforth
Dr. Enriqueta Vallejo-Yagüe
Prof. Dr. Mirjam Körner
Prof. Dr. Anja Raab
Dr. Renata Vidonscky Lüthold
Dr. Nicola Grignoli
Evelyne Graf
Dr. Ulrike Mathieu
Partner University of Bern
Keywords Health-Related Quality of Life, Health Services Research, Mast Cell Activation Syndrome, Interdisciplinary Research, Collaborative Intervention Development, Rare Diseases

Initial situation

Mast Cell Activation Syndrome (MCAS) is a complex chronic condition with a wide range of symptoms that can significantly impair the quality of life of those affected. Many patients also experience depression, anxiety, and disease-related social isolation.

People living with MCAS often report barriers to adequate medical care, partly due to diagnostic controversies and the limited awareness of MCAS within the healthcare system. Communication between patients and healthcare professionals is frequently perceived as challenging by both sides, underlining the need for improved care strategies.

LIFT MCAS is a joint research project of the School of Health Professions at Bern University of Applied Sciences (BFH) and the University of Bern. The project is led by an interdisciplinary team from psychology, medicine, nutrition counselling, pharmacoepidemiology, and physiotherapy, and is conducted in close collaboration with healthcare professionals and people living with MCAS.

Objectives

The acronyme LIFT stands for “Listening to patients and healthcare providers, Identifying needs, Forming co-design solutions, and Testing impact”. The project aims to develop a tailored intervention to improve the health-related quality of life of individuals with MCAS. Both the perspectives of healthcare professionals and patients are actively incorporated.

Procedure

The LIFT MCAS project consists of five consecutive work packages:

1. . Qualitative interview study with people living with MCAS

Investigation of the daily life, health-related experiences, and needs of individuals with MCAS in Switzerland.
The findings will subsequently be explored in more depth through focus group discussions.

2. Mixed-methods study among healthcare professionals (physicians, dietitians, psychologists)

Assessment of knowledge, practices, resources, and challenges in caring for people with MCAS.
Qualitative interviews will be conducted first, followed by an online survey.

3. Questionnaire study among people with MCAS

Investigation of disease burden, satisfaction with medical care, and potential comorbid conditions using an online questionnaire.

4. Co-design intervention development

Based on the findings from the first three work packages and current scientific literature, an intervention will be developed to improve the health-related quality of life of people with MCAS.
The development process will be carried out in a co-design approach with patients and healthcare professionals.

5. Intervention study

Assessment of feasibility, acceptability, and preliminary effectiveness of the developed intervention regarding quality of life and disease management.