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Project
EJP RD JTC: Quality of life of patients living with vascular LIVEr diseaseS Developing research on the social impact of rare diseases (FWOAL1061)
Patients with rare diseases face common problems such as diagnosis wandering, complex health
care needs, uncertain prognosis, side effects of treatments, with an overall impact on their work
or personal life, especially when they are still young and professionally active. However, data on
their Quality of life (QoL) are still scarce and focus on disease-related variables, failing to
incorporate the social and the subjective dimensions of QoL. People living with Vascular liver
diseases (VLD), who are mainly young and active patients, share these difficulties but no study
has been published on their QoL. Our main hypothesis is that the QoL of patients with VLD is poor,
with an impact on their work situation. Our main objective is to develop a questionnaire
highlighting the social impact of rare diseases, which will be tested in the setting of VLD, and
which will be transferable to other diseases. Our secondary hypothesis is that the subjective
dimension of QoL is not completely captured by questionnaires alone, but requires qualitative
and participatory methods to appropriately integrate the patients’ perspective. Our secondary
objective is to comprehensively assess QoL of VLD patients and their unmet needs by conducting
a peer-based research study: in-depth interviews with patients will be conducted and analyzed
by members of PAOs (patients’ organizations) previously trained by qualitative research experts.
The project gathers partners from different Social sciences and Humanities (SSH) disciplines,
clinicians, and patients’ representatives in a balanced Work Plan involving 5 European countries.
Our expected result is to design a questionnaire that can be transferable to other disease contexts
and that will be accessible for the scientific community so that any research team can use it easily
and freely. At the end of the project, the questionnaire will be available in English, French,
German, Italian, Spanish and Dutch. Expected impacts are to: 1) encourage research on the QoL
of patients living with a rare disease, 2) harmonize research on the social component of QoL, 3)
design appropriate interventions for patients with VLD, 4) provide data for advocacy and national
disease care plans, 5) improve knowledge on the effects of patient and public involvement
care needs, uncertain prognosis, side effects of treatments, with an overall impact on their work
or personal life, especially when they are still young and professionally active. However, data on
their Quality of life (QoL) are still scarce and focus on disease-related variables, failing to
incorporate the social and the subjective dimensions of QoL. People living with Vascular liver
diseases (VLD), who are mainly young and active patients, share these difficulties but no study
has been published on their QoL. Our main hypothesis is that the QoL of patients with VLD is poor,
with an impact on their work situation. Our main objective is to develop a questionnaire
highlighting the social impact of rare diseases, which will be tested in the setting of VLD, and
which will be transferable to other diseases. Our secondary hypothesis is that the subjective
dimension of QoL is not completely captured by questionnaires alone, but requires qualitative
and participatory methods to appropriately integrate the patients’ perspective. Our secondary
objective is to comprehensively assess QoL of VLD patients and their unmet needs by conducting
a peer-based research study: in-depth interviews with patients will be conducted and analyzed
by members of PAOs (patients’ organizations) previously trained by qualitative research experts.
The project gathers partners from different Social sciences and Humanities (SSH) disciplines,
clinicians, and patients’ representatives in a balanced Work Plan involving 5 European countries.
Our expected result is to design a questionnaire that can be transferable to other disease contexts
and that will be accessible for the scientific community so that any research team can use it easily
and freely. At the end of the project, the questionnaire will be available in English, French,
German, Italian, Spanish and Dutch. Expected impacts are to: 1) encourage research on the QoL
of patients living with a rare disease, 2) harmonize research on the social component of QoL, 3)
design appropriate interventions for patients with VLD, 4) provide data for advocacy and national
disease care plans, 5) improve knowledge on the effects of patient and public involvement
Date:1 Mar 2022 → Today
Keywords:Quality of life, Social inequalities in health, Vascular liver diseases, Mixed-methods, Participatory research, open science, Interdisciplinarity