By Katie Gallacher:
Health care providers across the globe are facing one of their biggest challenges yet: the increasing volume of people with chronic disease, and the enormous proportion of those with multimorbidity (more than one long term condition). It seems however, that whilst trying to keep up with demands, governing bodies and policy makers have forgotten one important thing…the patient experience. Amidst the perpetually multiplying disease centred guidelines and payment for performance measures, the individuals undergoing the investigations and treatments have gone somewhat unnoticed, as have the huge burdens that are placed upon them by health care providers. I say this from my experiences as a primary care researcher, general practitioner, and daughter (both my parents have required considerable interaction with health services). However, a body of research is emerging from across the world that explores the impact of healthcare demands on patients and their carers. I am proud to be studying for a PhD on this very topic: the treatment burden of chronic disease.
The term treatment burden is used to describe the workload of health care that those with long term conditions are required to perform in order to manage their condition and the impact that this has on functioning and well being. Workload encompasses the tasks carried out by patients during the management of their illness (e.g. taking medications, reading information leaflets, arranging transportation to appointments, making lifestyle changes). Treatment burden can be affected by the nature of the illness and treatments available, presence of comorbidities, and importantly, the organization of health services and the practices of health practitioners. Poor acknowledgment of multimorbidity in clinical guidelines causes a particular problem, as health care practitioners attempt to follow rigid disease centred targets that contradict one another and amalgamate to an unmanageable level of work for everyone involved. Additionally, patients may have differences in their capacity (meaning ability to handle the workload) resulting in different levels of burden despite the same workloads. Capacity may be affected by, for example, literacy, functional morbidity, financial resources or social support.
There has been a growing interest in the exploration of treatment burden for those with long term conditions. In 2009, an editorial in the BMJ called for ‘minimally disruptive medicine’, the practice of realistic health care that is tailored to the individual’s preferences and daily activities. The authors (two of whom are part of my supervisory team) argued that without this, individuals with long term conditions are less likely to adhere to management plans or engage with healthcare providers as they become overburdened by treatments that are difficult to fit into their lives. This year the BMJ commissioned another editorial by the same authors that further discusses the concept of treatment burden, an indication this is an area of research receiving considerable attention in the literature.
A plethora of papers from across the globe have recently been published on the patient experience of treatment burden, and initial methods of measurement have been developed. Papers have arisen from the UK, US, France and Australia (click here and here to see some references).
A theoretical paper was also published this year that examines the interactions between patient capacity and workload. Healthcare utilization is described as an experience characterized by social networks, with individuals and their support networks navigating health services under the controls of health care providers and the social and economic resources available to them.
Although this area of research is new, the theory behind it is not. In 1985 Corbin and Strauss conceptualised three types of work associated with chronic illness: illness trajectory work; everyday life work; and biographical work. Illness trajectory work consists of the course of illness over time and the work that goes into managing this process, such as regimen work and crisis management, closely related to treatment burden as we think of it today.
So what is the aim of all this research? Hopefully a deeper understanding of what it is like to walk in the shoes of those with long term conditions will encourage holistic health care that prioritises improving lives rather than reaching disease centred targets. We’ve still got a lot of shoes to try on, but we seem to be stepping in the right direction.