Treatment burden should be included in clinical practice guidelines to help improve treatment decisions and avoid overburdening patients, leading US physicians say.
Writing in the BMJ, a group led by the consultant pulmonologist Dr Claudia Dobler of the Mayo Clinic in Rochester, US, that clear information in guidelines on treatment burden – the work that patients do to manage their health and its effect on their life – would enable patients to make informed decisions about treatments.
They suggest the work that patients do to manage their health often remains invisible to health professionals, who only see the results, such as attended exercise programme or achieved weight loss.
This means that they often under-appreciate the workload and overestimate patients’ capacity for more interventions, they said.
Dr Dobler notes that some recent clinical guidelines acknowledge patients’ values and the acceptability and feasibility of the recommended actions, and yet they still don’t include evaluations of treatment burden.
“This makes it hard for patients to make informed decisions about treatments in line with their values and capacity,” she said.
“If future guidelines are to help clinicians and patients to make treatment decisions taking into account patients’ values and preferences, they should explicitly state the treatment burden associated with enacting different recommendations (the quantifiable workload as well as the potential effect on a patient’s life).”
Better understanding of the work required to follow treatment recommendations would help to improve treatment decisions and avoid overburdening patients, she said.
The group argues that guidelines should also explicitly recommend that clinicians discuss values and preferences with patients, especially for treatments associated with high workload.
“This would help clinicians to understand how individual patients prioritise different outcomes and treatment burden and would help patients to understand what components of their treatment are the essentials, even on a bad day, so that they can prioritise treatments appropriately.”
However, they warn that the information currently available on treatment burden for specific conditions and interventions is sparse and probably insufficient for most guidelines.
“The major challenges to including information on treatment burden in guidelines are therefore finding robust high quality methods for assessing treatment burden and meaningful ways of adding this information to clinical practice guidelines.”
Since treatment burden is not the same for all patients with the same condition – it depends on numerous factors such as age, disease burden, comorbidities, social support network and patients’ values and preferences – research is also needed determine the best way to integrate information on treatment burden into guidelines so that it reflects the variations in experiences and is robust and useful to guideline developers and users, the group said.