Quality of life of patients living with vascular LIVEr diseaseS Developing research on the social impact of rare diseases
LIVES is a European-funded project aiming to better understand the social impact of rare diseases on the quality of life of patients, particularly for people living with rare vascular liver diseases.
WHY
More and more attention is being paid to the quality of life of patients with chronic complex conditions, including rare diseases. As progress in therapeutics has resulted in increased life expectancy, the number of people living into adulthood with a rare disease has increased. Yet, data on the quality of life of patients living with rare diseases are still scarce and focus on disease-related variables, failing to incorporate the social and subjective dimensions of quality of life.
For instance, patients with rare diseases face common problems such as diagnosis wandering, complex health care needs, uncertain prognosis, and side effects of treatments, with an overall impact on their work or personal life, especially when they are still young and professionally active.
This social impact of rare diseases is poorly addressed in the scientific literature dealing with “quality of life” although it is critical in understanding the social inequalities generated by diseases and resulting from the difficulty to study, to work, to obtain loans, …
People living with rare vascular liver diseases, who are mainly young and active patients, share these difficulties. No study has been made on their quality of life.
WHAT
Our main objective is to develop a questionnaire highlighting the social impact of rare diseases, which will be first proposed to patients living with vascular liver diseases.
Our secondary objective is to comprehensively assess the quality of life of patients with vascular liver diseases and their unmet needs, with the help of participatory methods.
HOW
The project gathers researchers from a variety of disciplines applied to health (sociology, psychology, demography, epidemiology, public health), clinicians, and representatives of patients. It is organized into two parts:
- Quantitative study (“LIVES-QUANTI”): A questionnaire will be designed to assess the quality of life of patients living with a rare disease. It will be proposed to patients living with a vascular liver disease followed up in three European countries (France, Spain, and Switzerland).
- Qualitative study (“LIVES-QUALI”): In-depth interviews will be conducted with patients living with vascular liver diseases in order to understand their unmet needs in four European countries (France, Spain, Switzerland, the Netherlands). This study will be a participatory study: the interviews will be conducted and analyzed by other patients, and members of patients’ organizations, with the help of qualitative research experts from Academia.
EXPECTED IMPACT
QUANTITATIVE STUDY
(LIVES-QUANTI)
- Develop research on the social aspects of quality of life for patients living with a rare disease
- Provide data for advocacy and national disease care plans
QUALITATIVE STUDY
(LIVES-QUALI)
- Design appropriate interventions for patients with vascular liver diseases,
- Improve knowledge on the effects of patient and public involvement.
