Multi-Stakeholder Perspectives on Quality of Life during the Induction and Maintenance Phases of Haemochromatosis Treatment

Background: Haemochromatosis is a condition that has been reported to reduce quality of life (QoL) in patients compared to healthy controls. The evidence to support this comes mainly from quantitative research with little in-depth investigation of the phenomena from patients, or those who support them. The aim of this study therefore was to explore the multi-stakeholder experiences of the induction and maintenance phases of haemochromatosis and how this relates to QoL.&nbsp;&nbsp;<br><br>Methods: Ten online semi-structured focus groups (FG’s) were conducted with patients (n=40), health care practitioners (HCP’s) (n=6), and charity representatives (n=4) that support haemochromatosis patients. The FG’s were semi-structured to focus on the World Health Organisation (WHO) domains of QoL (physical, psychological, social, and environmental) and covered two distinct phases of the condition (induction and maintenance). Template analysis was used to analyse the data based on the a priori themes of physical, psychological, social, and environmental QoL. Methods were reported as per the Consolidated Framework for Implementation Research framework.&nbsp;<br><br>Findings: Significant impacts on optimum QoL were discussed spanning all domains of QoL (physical, psychological, social and environmental factors), although physical and environmental domains dominated. Patients and HCP’s differed on perspectives of the severity of the condition from both psychological and physical domains, whilst fatigue, inconsistent care and diagnosis, and unmet support needs were shared perspectives from all stakeholders.<br><br>Interpretation: There are significant barriers to QoL primarily due to the physical impacts of haemochromatosis and the environmental barriers within the UK healthcare system. This includes significant joint pain and fatigue and inconsistent and/or delayed diagnosis and treatment. Future research should attempt to mitigate some of these healthcare barriers, whilst more research is needed to understand the physiological mechanisms and mitigation strategies for joint pain and fatigue.