See-saws: the delicate balance of burden of treatment in chronic heart failure

Abstract

Abstract Funding Acknowledgements Type of funding sources: Other. Main funding source(s): This work was supported as a part of a fully funded Clinical Academic Doctoral Fellowship at the University of Southampton, Portsmouth Hospitals University NHS Trust, and the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) Wessex. This article is independent research supported in part by the NIHR ARC Wessex. Carl May’s contribution was supported by NIHR ARC North Thames and Alison Richardson’s by NIHR ARC Wessex. Rosalynn Austin is funded by an NIHR ARC Wessex Internship. Background Burden of Treatment (BoT) is often described as a delicate balance between a patient’s capacity (capabilities and resources) to do the work of illness management and the workload (self-care, treatment and illness burden). Chronic heart failure (CHF) is regarded as a burdensome disease for both patients and healthcare services with the burden expected to rise. While research in BoT in CHF is increasing, the factors influencing the balance between capacity and workload has yet to be fully elucidated. Purpose To identify factors which may influence BoT in CHF. Methods Secondary analysis of 32 semi-structured interviews of participants with CHF who participated in the SYMPACT trial. All participants were asked to describe the balance between capabilities and workload of manging CHF using the metaphor of a see-saw. Responses to that question were examined for factors patients reported as altering the balance between capacity and workload. Results Most participants (n=31) described the seesaw as dynamic, where capacity and workload were balanced or unbalanced. If capacity > workload this was viewed as positive, "I would stay down because the things that you mentioned are very easy" (T137). When instead the balance reversed and capacity < workload it was viewed as negative, "The heavier you know with the work and the abilities less, you kind of think […] I’m good for nothing" (B001). Factors reported by patients, to alter their capacity included: ability to self-care, support from social networks, symptoms, illness identity, and quality of life. Workload was reported to be altered by nature of healthcare interactions, effectiveness of treatments, comorbidities and the feeling of overwhelming treatment burden (Figure 1). One participant described overwhelming burden with a different metaphor: "A huge weight around my neck. Pulling me down into a pit of despair" (S110), was reported as more accurate than a seesaw when thinking about treatment burden. Conclusions BoT is an important factor to consider in the clinical management of CHF. Modifiable factors such as symptoms, quality of life, and the nature of healthcare interactions are reported as altering the balance between a patient’s capacity and the workload associated with self-care.Factors balancing burden of treatment