Treatment burden is defined as the effort required of patients to look after their health and the impact this has on their wellbeing and day-to-day life (Eton et al., 2012). This can include having to order, collect and take complex medicine regimens; to co-ordinate, arrange transport for and attend multiple healthcare appointments; to make lifestyle changes; and to self-monitor conditions such as blood pressure.
A useful way to conceptualise treatment burden is to think about the ‘workload’ of being the patient (e.g. the work of co-ordinating appointments and taking multiple medicines) and the ‘capacity’ to do the work (e.g. the social support networks and resilience a patient has to cope with the workload) (Shippee et al., 2012). Some patients may experience minimal treatment burden despite having a high workload, as they have good strategies, support and, therefore, high capacity to manage the workload. Other patients with a relatively low workload may experience high treatment burden, due to poor social support and, therefore, poor capacity to manage the work. In the case study example, Max has both high workload and poor capacity to manage the workload and is, therefore, at particular risk of high treatment burden. Some patients can feel overwhelmed by treatment burden (May et al., 2014) and this can have a significant impact on their quality of life (see Box 1) (Duncan et al., 2018).
• Having to make sure you have all the medications … some I have to collect once a month, others once every two months … It does take a lot of time to make sure you have everything. The thought of going away and having a holiday becomes a monumental task
• Arranging appointments – oh God! … It is like gold dust getting to see my own GP, it really is like gold dust … I only really want to see him because he knows everything about me … but the wait these days is getting ridiculous … it’s got worse
• You’re always giving the same story to somebody different … I never see the same person twice, and I always feel, they always ask the same questions … They’ve got the file in front of them but you always get the impression that the file has arrived the same moment as I have. So they open it whilst I’m sitting there, and there learning about me whilst I’m sitting there … I think we’re used to it … Sometimes I do think, wouldn’t it be nice to see someone who knows who I am
Unpublished patient interviews from the Multimorbidity Treatment Burden Questionnaire validation study (Duncan et al., 2018)
Who is most at risk of high treatment burden?
Patients with multimorbidity are at particular risk of having a high treatment burden, and the greater the number of long-term conditions a person has, the higher their treatment burden is likely to be (Duncan et al., 2018). Younger patients (Duncan et al., 2018; Tran et al., 2012) and patients with mental health conditions, including depression and dementia (Boyd et al., 2014; Duncan et al., 2018), low quality of life and poor self-rated health (Duncan et al., 2018) have been found to report higher treatment burden. A study in Denmark found that patients with low health literacy levels are at greater risk of high treatment burden (Friis et al., 2019). This may be due to difficulties navigating complex health care systems. See Box 2 for tips on how to reduce treatment burden for patients.
Tips to reduce treatment burden for patients.
• Think about treatment burden and ask patients about it. How do they find going to GP and hospital appointments? Do they think all the appointments are necessary? Could we (the surgery) help make things easier? How do they find ordering and collecting their medicines?
• How do systems in your practice impact on treatment burden? How do patients book appointments? What support does the surgery offer to help chase up appointments?
• Simplify patients’ medicines. Are they all indicated? Is the patient taking them? Do they understand the potential harms and benefits of each medicine? Would they like to stop some? Could a longer duration be prescribed to save them having to order and collect them frequently?
Support for patients
• Link workers and care navigators can help patients to co-ordinate their appointments
• Social prescribing can help patients to think about what is important to them and to set their own goals. It is important to be mindful of the balance between empowering the patient to take control of their health and adding to their treatment burden by asking them to see more people
• GP-based pharmacists, employed by the practice in a similar way to practice nurses, are becoming more common, and may be able to help simplify patients’ medicines
Disease-centred versus person-centred care
The current approach to health care in the UK is disease-centred, where patients attend separate appointments for each of their health conditions, and medicines are prescribed in line with multiple single-disease guidelines.
The 3D Study was a multicentre randomised controlled trial that aimed to improve care for patients with multimorbidity by delivering a more person-centred approach (Salisbury et al., 2018). The study assessed the effectiveness of dual consultations with a practice nurse and then a GP every 6 months, and a yearly pharmacist review. The study found significant improvements in measures of person-centred care, but no evidence of effect on quality of life or treatment burden (Salisbury et al., 2018).
Case study
Max is a 45-year old with diabetes, hypertension, previous myocardial infarction, asthma, hip and knee osteoarthritis and depression, and takes multiple medicines. He works in a warehouse and lives with his wife and two young children. He attends 6-monthly GP appointments with the diabetes nurse and the asthma nurse, and has yearly appointments with the hospital cardiology team. He re-arranges the hospital appointments to avoid taking time off work. This involves multiple phone calls, where he can be kept on hold for 30 minutes. He gets two buses to the hospital and struggles to walk from the bus stop to the hospital entrance. He is advised by doctors and nurses to lose weight, but he works long shifts and does not have the time or energy to think about how he would achieve this objective. He worries about being overweight and feels like he is letting his family down.
KEY POINTS
Treatment burden can have a significant impact on patients’ quality of life and mental health
When thinking about treatment burden, it is useful to consider both the work of being a patient (e.g. co-ordinating appointments, collecting medicines) and the capacity to manage the workload (e.g. support networks)
References
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BoydCMWolffJLGiovannettiE, et al.(2014) Healthcare task difficulty among older adults with multimorbidity. Medical Care52(Suppl 3): S118–125. DOI: 10.1097/MLR.0b013e3182a977da.
2.
DuncanPMurphyMManM, et al.(2018) Development and validation of the Multimorbidity Treatment Burden Questionnaire (MTBQ). BMJ Open8: e019413DOI: 10.1136/bmjopen-2017-019413.
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EtonDTRamalho de OliveiraDEggintonJS, et al.(2012) Building a measurement framework of burden of treatment in complex patients with chronic conditions: A qualitative study. Patient Related Outcome Measures3: 39–49. DOI: 10.2147/PROM.S34681.
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Friis K, Lasgaard M, Hauge Pedersen M, et al. (2019) Health literacy, multimorbidity, and patient-perceived treatment burden in individuals with cardiovascular disease. A Danish population-based study. Patient Education and Counseling 102(10): 1932–1938. DOI: 10.1016/j.pec.2019.05.013.
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