Treatment burden should be included in clinical practice guidelines
BMJ 2018; 363 doi: https://doi.org/10.1136/bmj.k4065 (Published 12 October 2018) Cite this as: BMJ 2018;363:k4065
All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles or when it is brought to our attention that a response spreads misinformation.
From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit.
The word limit for letters selected from posted responses remains 300 words.
Dobler and colleagues rightly point out that clinal practice guidelines should incorporate information on treatment burden, to enable patients to make informed decisions about treatments. For people of working age, information should also include acceptability and feasibility of implementation in the work context.
A significant proportion of people in employment are living with a health condition or disability and this is set to rise as the workforce ages. Work gives people a sense of purpose in life, an opportunity for social interaction, a way of structuring time, as well as providing money and other resources needed for material wellbeing. Work contributes to happiness, helps build confidence and self-esteem and provides a sense of identity and personal achievement. People who are out of employment have poorer physical and mental health overall.
Disease treatment (e.g. the introduction of an intensive rehabilitation programmes or a tight insulin regimen), the cumulative treatment workload and its sequelae (e.g. frequent visits to health professionals, side effects of treatment) can be a barrier to a timely return to work or even incompatible with work demands. Enlightened employers will seek to accommodate the burden of treatment - for example, by making provisions for disability leave, or by adjusting shift patterns and work tasks. However, where the employer is unable or unwilling to accommodate such adjustments, the result may be loss of employment, with often devastating consequences to the patient's physical and emotional health and wellbeing.
Shared decision-making should take into consideration patients’ values and preferences in relation to employment with the aim of enabling people of working age with chronic conditions remain in and benefit from employment. This can be facilitated by the inclusion of work variables in guideline frameworks. How this can be meaningfully achieved should be the object of research, as highlighted by Dobler.
Competing interests: No competing interests
Thank you for publishing this timely article. When healthcare is becoming more expensive and less effective despite the astonishing new technologies that are being implemented every day, we as physicians need to ask ourselves what we are doing wrong. What we are doing is practicing theoretical medicine but our patients have to exist in the reality of their lives. If there is a disconnect we are not providing adequate care. This is about health equity and health care access and without it the best physicians will be powerless to help their patients.
Let's stop pretending that this is not part of our jobs. Let's stop pretending that we cannot do anything if our patients cannot afford or comply with the care we recommend. Let's recognize that social, economic, and psychological factors are critical to whether medical care is effective or just becomes an overwhelming burden to our patients. Let's pull our heads out of the sand and improve access to the care we recommend.
Serena H Chen MD
Director Reproductive Medicine
Saint Barnabas Medical Center
NJ
Competing interests: No competing interests
Dear Editor,
Dobler and colleagues make a clear and compelling case for the inclusion of treatment burden in clinical practice guidelines [1]. The points raised serve as a welcome reminder that important aspects of holistic care, such as addressing the priorities and capabilities of patients and carers, can be overlooked in the pursuit of specified clinical outcomes.
At population level, another important aspect to consider in addressing treatment burden is that of healthcare system design. As suggested by others, well-designed models of care could minimise aggregate treatment burden (‘minimally disruptive medicine’) [2][3], with potential co-benefits for sustainability and efficiency. In England this has particular relevance to Sustainability and Transformation Partnerships (STPs) and Integrated Care Systems (ICSs) as they strive to transform and reconfigure services [4][5]. Approaches to reducing unnecessary treatment burden might include improving coordination of care and communication between providers, and delivering support to enhance patient capacity to manage essential treatment. We also need robust indicators of treatment burden risk to identify the potentially over-burdened and to evaluate change, using measures derived from health system linked data, for example as developed through Local Health and Care Record Exemplars (LHCREs) [6]. Such system-level perspectives would complement the inclusion of treatment burden into clinical practice guidelines.
Yours faithfully,
James Morris, Simon Fraser, Paul Roderick
University of Southampton
References:
1. Dobler CC, Harb N, Maguire CA, et al. Treatment burden should be included in clinical practice guidelines. BMJ 2018;363:k4065.
2. Mair FS, May CR. Thinking about the burden of treatment. BMJ 2014;349:g6680.
3. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ 2009;339:b2803.
4. NHS England. Sustainability and transformation partnerships. www.england.nhs.uk/integratedcare/stps
5. NHS England. Integrated care systems. www.england.nhs.uk/integratedcare/integrated-care-systems
6. NHS England. Local health and care record exemplars. www.england.nhs.uk/publication/local-health-and-care-record-exemplars
Competing interests: No competing interests
The Analysis "Treatment burden should be included in clinical practice guidelines" is very logical.
Treatment burden is a form of "Polypharmacy" and a reality at the present time. It's affecting patients of all age groups but is common in elderly people.
From a Patient Perspective, the "Pill Burden" reduces compliance and discourages patients in the community to follow treatment.
It's the responsibility of Health Care Professionals (HCPs) to take care of treatment burden and prescribe judiciously to reduce the pill burden of patients.
Regards.
Competing interests: No competing interests
This little study seems relevant:
https://www.ncbi.nlm.nih.gov/labs/pubmed/21792297-patient-experience-the...
Competing interests: No competing interests
Re: Treatment burden should be included in clinical practice guidelines
Thank you for publishing this paper, which highlights an often ignored and quite crucial element in guidelines, and clinical decision-making in general.
We would like to point out some recent advances in this field. Burden of treatment could be appraised in a broader framework of “practical issues” related to how a treatment, test or procedure will impact a patients’ daily life. These include issues related to medication routine, subsequent tests and visits needed, coordination of care, but also other issues such as the implications of decisions on social activities, work or travel. Clinicians need to raise these issues with patients in order to find out what is truly best for each individual patient, ideally through shared decision making.
To do so, guidelines and evidence summaries need to systematically include these aspects. Our team in the non-profit MAGIC research and innovation program (http://magicproject.org) has developed such an approach. The MAGIC authoring and publication platform (MAGICapp, http://magicapp.org) now offers organisations producing evidence summaries, recommendations and decision aids a feature where practical issues easily can be added. We are preparing a manuscript to explain how we developed this new framework and associated features.
As demonstrated in the BMJ Rapid Recommendations (www.bmj.com/rapid-recommendations)– a project set up to respond to practice-changing evidence with trustworthy guidance – clinicians and patients will find pertinent practical issues to inform their decisions both in the Journal and in MAGICapp. The guideline panels have explicitly taken practical issues into account when moving from evidence to recommendations, including burden of treatment. It has been a very educational experience, as the guideline panels need to find new sources of evidence, such as from www.healthtalk.org. We have also partnered with patients in our guideline panels. This has allowed us to systematically include their perspectives and refine the practical issues. Finally, this information is incorporated in our SHARE-IT decision aids, accessible in MAGIC through each Rapid Recommendation.
This is an emerging field that will undoubtedly require more research. Another important question is whether practical issues should be included throughout the evidence ecosystem, not only in guidelines, but also in evidence synthesis and systematic reviews.
Anja Fog Heen, physician
Per Olav Vandvik, physician, methodologist
Thomas Agoritsas, physician, methodologist
On behalf of the MAGIC research and innovation program
Competing interests: Dr.Vandvik and Dr.Agoritsas are unpaid board members in the non-profit MAGIC Foundation. Dr.Heen conducts her Ph.D project on practical issues in the SHARE-IT project. No financial conflicts of interests reported.