Quality of life of patients living with vascular LIVEr diseaseS Developing research on the social impact of rare diseases

Created Nov. 22, 2023, 10:42 a.m.
Updated Nov. 22, 2023, 11:46 a.m.

In-depth interviews will be made to understand patients' living with Vascular liver diseases (VLD) perspectives on Quality of life (QoL), and specific factors they consider critical to defining QoL. Indeed, qualitative methods are relevant to comprehensively understand the meanings of a complex social phenomenon. However, in order to fully integrate the patients’ perspective, we will conduct a “peer-based research study”. Peer research is considered as “the contemporary superior level of patient involvement” since it equitably involves community members (e.g. patients) and researchers in all aspects of the research process, including analysis. In peer-research, patients act as peer-researchers and get paid for their involvement.

Peer-researchers will be first trained to the principles of qualitative interviewing by a team of experts in qualitative research in each country via national meetings. The participation of three peer-researchers is expected in each country. A two-days international seminar will be then held in person to allow practical training to the making of interviews, as well as the set-up of a self-care plan. Within this seminar, based on the results of the case studies and the preliminary results of the quantitative study a comprehensive interview guide will be designed by the peer-researchers with the technical help of academic researchers.

Aim

Our main objective is to  comprehensively assess Quality of life (QoL) of Vascular liver diseases (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.

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