Patients’ experiences of treatment burden: so much more than a series of physical side effects!

Living with a long term condition is hard work.  No-one would argue that coping with chronic pain, breathlessness or fatigue isn’t difficult, nor that health services and professionals shouldn’t do what they can to try and relieve these symptoms.  The benefits of medication, surgery and rehabilitation are undeniable; they save lives and reduce symptoms for millions.  But in the search for cures, have we underestimated the costs and disruptions that treatments generate for patients? And when patients ‘fail’ to follow health professionals’ recommendations, why do we assume that the problem lies with the patients and not the treatments? These are important questions that the Minimally Disruptive Medicine movement and our recent review paper seek to address.

We systematically reviewed the qualitative literature on treatment burden and identified a total of 11 papers which investigated patients’ (and sometimes also families’) perspectives of treatment burden; what it felt like to live day-after-day with often complex treatment regimes, the negative impacts they experienced  and how they tried to minimise these.  The papers we reviewed provided an international perspective and included participants aged 8-96 with a range of long term health conditions (affecting the cardiovascular, respiratory, digestive, urinary, endocrine, and neurological systems) which varied in terms of the severity, criticality and impact of both the disease and the treatment.

We identified eight classes of treatment generated disruptions : physical symptoms and side-effects; negative emotions; stigma and identify disruption; loss of meaningful activities living with uncertainty; loss of freedom and independence; feeling isolated and inadequately supported; and,  experiencing relationship strain. Our paper provides definitions for each of these and quotes from patients to help explain and illustrate what treatment burden ‘feels’ like.

Looking at this list of impacts, I think it is clear that the experience of treatment burden is much more than the list of medication side-effects it is often equated to. Treatment side-effects such as nausea, rashes, palpitations etc are well recognised in medicine; indeed, many papers on treatment burden focus solely on these physiological side-effects. Whilst we found that physiological side effects were important we also identified that in many cases it was not the side-effects themselves that were most significant, but the knock-on impact that those side-effects had on people’s valued activities, relationships and identity.  This aligns with Amarta Sen’s capabilities approach ,  and views healthcare as much more than ‘healing the body’ but rather enabling people to ‘do, feel and be’ ‘what, how and who’ they choose (read more in this excellent paper by Vikki Entwistle and colleagues). Viewed from this perspective, treatments are only effective when they not only relieve the original symptoms but when they also do not compromise people’s capabilities to function as they wish in all domains of their life (physical, psychological, social and relational).

This review also identified how people attempt to avoid or minimise treatment burden. One  approach to minimising BoT was to psychologically normalise treatments through self-talk and reframing. Alternatively, many patients stopped or modified their treatments. We called this ‘rationalised non-adherence’ to reflect the rational nature of these acts when seen from the perspective of people trying to maximise their capabilities and life quality. Clinicians working in end-of-life care appeared comfortable discussing and supporting non-adherence decisions; however, in other healthcare arenas patients’ non-adherence was often frowned upon by professionals and became a ‘secret-act’, generating guilt, disrupting relationships and reducing outcomes.

We think that it’s time that the ‘patient-centredness’ agenda is extended to more fully consider treatment burdens and rationalised non-adherence in everyday clinical encounters. Clinicians need to engage patients in conversations that allow them to be honest about treatment burden and discuss adherence difficulties without fear of judgement. Appropriate modifications can then be made that minimise disruptions to all aspects of patients’ lives.

Sara Demain, Associate Professor, Faculty of Health Sciences, University of Southampton

Sara is supported by a post-doctoral fellowship awarded by the UK National Institute for Health Research. The views expressed in this publication are not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.