For Me, Quality of Life Is When I Get Through the Day Without Thinking: I Won't Make It: A Participatory Qualitative Study of Health‐Related Quality of Life in Rare Liver Diseases
Abstract
BACKGROUND: Vascular liver diseases (VLDs) predominantly affect young adults and require lifelong monitoring. The health-related quality of life (HRQoL) of patients with VLDs is deteriorated, with high levels of fatigue and depressive symptoms, but their lived experience and unmet needs remain unknown. To fully integrate the patients' perspective and generate actionable insights, we conducted a qualitative peer-research study. METHODS: Twelve peer researchers conducted interviews with patients in France, Spain, Switzerland, and the Netherlands. Analysis proceeded in three phases: individual inductive thematic analysis independently made by peer and academic researchers, followed by an international workshop to build a shared thematic framework. Third, directed content analysis, informed by the shared framework, was made by an academic researcher. RESULTS: From 27 interviews, five themes were identified, mapping the disease's impact on quality of life from diagnosis onward, and throughout the patient journey. First, the diagnosis trajectory was characterised by 'uncertainty and biographical disruption'. Then, long-term symptoms were described as impacting daily life through the experience of 'chronic uncertainty, loss of ability and social exclusion'. Participants' accounts also reflected the social impact of VLDs, which resulted in 'renegotiating roles, ties and identities'. All along the care journey, their healthcare experience could be marked by 'relational and institutional gaps shaping illness experience'. Finally, 'the sense of belonging to a community of peers' was highlighted as a potential but lacking resource. CONCLUSIONS: Living with a rare VLD involves uncertainty, unpredictable fatigue, stigma, and social disruption, alongside efforts to maintain dignity and autonomy. While patients can demonstrate resilience, this does not negate ongoing needs. Improving quality of life requires addressing not only symptoms such as fatigue, anxiety or sexual dysfunction but requires guidance on physical activity, nutrition or occupational and financial challenges. PATIENT AND PUBLIC CONTRIBUTION: Ten patients and two caregivers were involved as peer researchers throughout the study, ensuring that priorities, interpretations, and conclusions reflected patient-defined concerns. All peer researchers contributed to the design, data collection and analysis activities. Due to professional and health constraints, about half of the PRs could only participate in the first local analysis phase. PRs were financially compensated.
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BibTeX
@article{alary2026quality,
title = {{For Me, Quality of Life Is When I Get Through the Day Without Thinking: I Won't Make It: A Participatory Qualitative Study of Health‐Related Quality of Life in Rare Liver Diseases}},
author = {Anouck Alary and Jane Sattoe and Lynda Sifer-Rivière and Isabelle Aujoulat and José Mira and Guenda Bernegger and Giada Danesi and Eva Gil-Hernández and Pura Ballester and Mercedes Guilabert and Doortje Nipius and Jeanina Kousemaker-Nieuwdorp and Kay van der Meer-Kuiper and Stefania Cannavò and Cecile Drossart and Liliane Veniat and María Caiata Zufferey and Agnes Dumas},
journal = {Health Expectations},
year = {2026},
month = jun,
doi = {10.1111/hex.70721},
url = {https://hal.science/hal-05842280v1},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - For Me, Quality of Life Is When I Get Through the Day Without Thinking: I Won't Make It: A Participatory Qualitative Study of Health‐Related Quality of Life in Rare Liver Diseases
AU - Anouck Alary
AU - Jane Sattoe
AU - Lynda Sifer-Rivière
AU - Isabelle Aujoulat
AU - José Mira
AU - Guenda Bernegger
AU - Giada Danesi
AU - Eva Gil-Hernández
AU - Pura Ballester
AU - Mercedes Guilabert
AU - Doortje Nipius
AU - Jeanina Kousemaker-Nieuwdorp
AU - Kay van der Meer-Kuiper
AU - Stefania Cannavò
AU - Cecile Drossart
AU - Liliane Veniat
AU - María Caiata Zufferey
AU - Agnes Dumas
PY - 2026
DA - 2026/06/14
JO - Health Expectations
DO - 10.1111/hex.70721
UR - https://hal.science/hal-05842280v1
AB - BACKGROUND: Vascular liver diseases (VLDs) predominantly affect young adults and require lifelong monitoring. The health-related quality of life (HRQoL) of patients with VLDs is deteriorated, with high levels of fatigue and depressive symptoms, but their lived experience and unmet needs remain unknown. To fully integrate the patients' perspective and generate actionable insights, we conducted a qualitative peer-research study. METHODS: Twelve peer researchers conducted interviews with patients in France, Spain, Switzerland, and the Netherlands. Analysis proceeded in three phases: individual inductive thematic analysis independently made by peer and academic researchers, followed by an international workshop to build a shared thematic framework. Third, directed content analysis, informed by the shared framework, was made by an academic researcher. RESULTS: From 27 interviews, five themes were identified, mapping the disease's impact on quality of life from diagnosis onward, and throughout the patient journey. First, the diagnosis trajectory was characterised by 'uncertainty and biographical disruption'. Then, long-term symptoms were described as impacting daily life through the experience of 'chronic uncertainty, loss of ability and social exclusion'. Participants' accounts also reflected the social impact of VLDs, which resulted in 'renegotiating roles, ties and identities'. All along the care journey, their healthcare experience could be marked by 'relational and institutional gaps shaping illness experience'. Finally, 'the sense of belonging to a community of peers' was highlighted as a potential but lacking resource. CONCLUSIONS: Living with a rare VLD involves uncertainty, unpredictable fatigue, stigma, and social disruption, alongside efforts to maintain dignity and autonomy. While patients can demonstrate resilience, this does not negate ongoing needs. Improving quality of life requires addressing not only symptoms such as fatigue, anxiety or sexual dysfunction but requires guidance on physical activity, nutrition or occupational and financial challenges. PATIENT AND PUBLIC CONTRIBUTION: Ten patients and two caregivers were involved as peer researchers throughout the study, ensuring that priorities, interpretations, and conclusions reflected patient-defined concerns. All peer researchers contributed to the design, data collection and analysis activities. Due to professional and health constraints, about half of the PRs could only participate in the first local analysis phase. PRs were financially compensated.
SN - 1369-6513
SN - 1369-7625
ER -