Health-related quality of life (HRQOL) and PRO in PSVD – Paris PSVD Meeting

Item: Health-related quality of life (HRQOL) and PRO in PSVD – Paris PSVD Meeting
Rating: 4
Author: PostSingularity Institute

by Aurélie Plessier, Agnès Dumas, Sophie Penisson

Life & Natural Systems Medicine & Health MBNHPersonal and public health MBNH9Health psychology

🎙 Aurélie Plessier, Agnès Dumas, Sophie Penisson 👥 2K 📅 January 23, 2026 ⏱ 32 min 👁 33 📄 expert opinion 🧭 2026-08-16

Available in: English (current) Français

Keywords

PSVDHRQOLPROEQ-5DCLDQqualitative interviewspatient pathway

Summary

This presentation from the Paris PSVD Meeting 2025 addresses health-related quality of life (HRQOL) and patient-reported outcomes (PRO) in Porto-Sinusoidal Vascular Disease (PSVD). The speakers—a hepatologist, a sociologist, and a patient representative—emphasize the growing importance of HRQOL as a prognostic indicator, citing its link to premature mortality. They discuss methodological considerations for selecting HRQOL tools, advocating for the use of existing validated instruments rather than developing new ones for rare diseases. They present findings from a European study on vascular liver diseases showing impaired HRQOL compared to the general population, with factors such as financial difficulties, hepatic encephalopathy, and female gender negatively impacting scores. For PSVD specifically, a French study associated lower HRQOL with lower hemoglobin, diabetes, and HIV infection. The presentation also highlights qualitative research from the RITA project, based on in-depth interviews with 16 PSVD patients, revealing three distinct disease stages with varying symptoms and impacts, including anxiety, fatigue, pain, and work-related issues. The speakers propose using the Chronic Liver Disease Questionnaire (CLDQ) as a basis for assessing HRQOL in PSVD, supplemented by additional items for symptoms like dizziness and swelling. They also discuss the development of a patient pathway for PSVD, emphasizing the importance of patient input in creating accessible and non-alarming educational materials. The talk concludes with a discussion on practical implementation of HRQOL assessments in clinical practice, suggesting a needs-driven approach.

226 words

Critical Evaluation

Value of the Information & Strength of the Argument

The presentation provides valuable insights into HRQOL in PSVD, combining quantitative and qualitative research findings. It underscores the importance of PROs in rare diseases and offers practical guidance on tool selection. The argumentation is solid, supported by references to specific studies (e.g., the European study on vascular liver diseases, the French PSVD study) and established questionnaires (EQ-5D, MFIS-5, PHQ-8, CLDQ). The inclusion of patient perspectives adds depth, highlighting the real-world impact of the disease. However, some results are preliminary, and the presentation is an expert opinion rather than a systematic review.

Scientific Rigor, Source Quality, Title Accuracy

The scientific rigor is high: the speakers are experts in their fields, and they reference published studies and ongoing research. The sources cited include the European study on vascular liver diseases, the French PSVD study, and the RITA project. The title accurately reflects the content, focusing on HRQOL and PRO in PSVD. The presentation is well-structured, with clear explanations of methodological considerations and practical implications. No comments were provided for analysis.

177 words

Title / Content Match

The title accurately reflects the content: the presentation focuses on HRQOL and PRO in PSVD, as delivered at the Paris PSVD Meeting.

Quality & Reliability

8/10

Presentation by recognized experts in hepatology, sociology, and patient representation, based on published studies and ongoing research. The content is well-structured, references specific studies and tools, and includes patient perspectives. However, it is a conference talk without peer review, and some claims are based on preliminary results.

Key Moments

Markers derived by PSI from the transcript: the creator did not define chapters.

Cited Sources

FILFOIE website — Mentioned as the network organizing the meeting and providing resources.
EQ-5D — Generic questionnaire used in the European study on vascular liver diseases.
MFIS-5 — Fatigue questionnaire used in the European study.
PHQ-8 — Depression questionnaire used in the European study.
CLDQ (Chronic Liver Disease Questionnaire) — Proposed as a basis for assessing HRQOL in PSVD.

Concurring Sources

EQ-5D — Used in the European study, consistent with recommendations for generic measures.
CLDQ — Proposed for PSVD, aligning with the need for disease-specific tools.

Dissenting Sources

No discordant sources found — The presentation did not mention any conflicting sources or studies.

Contribution & Novelties

The presentation offers a comprehensive overview of HRQOL in PSVD, combining quantitative and qualitative data. It highlights the need for disease-specific assessment tools and provides preliminary evidence from qualitative interviews. The development of a patient pathway is a novel contribution, emphasizing patient involvement in creating educational resources.

Pour aller plus loin :

Porto-sinusoidal vascular disease: a review — Overview of PSVD, its pathophysiology, and clinical features.
Patient-reported outcomes in rare diseases — Discussion on the use of PROs in rare disease research.
Qualitative research in health — Overview of qualitative methods in health research.

94 words

Radar Profile

The radar profile shows high scores across all dimensions, indicating a well-rounded presentation with substantial information, strong methodological grounding, and good reliability. The slightly lower score on technical level reflects the intended audience of healthcare professionals, but the content remains accessible.

Reliability 8/10