Are there suggestions on the best ways of addressing the issues of management responsibilities and tasks that recent evidence from qualitative studies has showed that it is solely shifted on to patients by the health care systems, which has been reported a frustrating and challenging concern to patients and their caregivers.
Thinking about the burden of treatment. Should it be regarded as an indicator of the quality of care?
BMJ 2014;349:g6680 doi: 10.1136/bmj.g6680 (Published 10 November 2014)
If we take the definition of treatment burden " as the “workload” of health care that patients must perform in response to the requirements of their healthcare providers as well as the “impact” that these practices have on patient functioning and well being. “Workload” includes the demands made on a patient’s time and energy due to treatment for a condition(s) (e.g. attending appointments, undergoing investigations, taking medications) as well as other aspects of self-care (e.g. health monitoring, diet, exercise). “Impact” includes the effect of the workload on the patient’s behavioural, cognitive, physical, and psychosocial well-being", by Gallacher et al. (2013) then it is very difficult to operationalise particularly because it is part of a dynamic state involving a complex set of personal, social and clinical factors contributing towards the patient’s experience. As defined by Gallacher, "A range of treatment burdens or workload factors for those with chronic disease have been described which include: logistical burdens, for example organising appointments or visits from health professionals, organising rehabilitation, arranging transport; technical burdens, for example enacting lifestyle changes, performing rehabilitation exercises, modifying environments, taking medications; relational burdens, for example enrolling family, friends and health professionals for support, initiating interactions with possible carers and supporters; and sense making burdens, for example conceptualising problems, understanding and learning about management strategies, knowing when to seek help, differentiating between treatments". It seems that there is still lack of a full understanding of the phenomenon, and in particular, what might be the generic or disease specific features. As a first step, better conceptualization is needed and only then can one go for operationaliztion of the various types: logistic, technical, relational, etc..., each with its sub-domains. This is therefore an interesting area of study as there is a huge gap in the literature.
(Gallacher, K., Jani, B., Morrison, D., Macdonald, S., Blane, D., Erwin, P., ... & Mair, F. S. (2013). Qualitative systematic reviews of treatment burden in stroke, heart failure and diabetes-Methodological challenges and solutions. BMC medical research methodology, 13(1), 10.)