Dear Juan. Thanks for sharing this paper which highlights an often ignored and quite crucial element in guidelines, and clinical decision-making in general.
For those interested in this topic: There are some advances in this field and I would like to point you to one of them, focussing on always including “practical issues” in guidelines to make burdens off tests and treatments more explicit.
Each and one of these have deliberately taken practical issues into account when moving from evidence to recommendations. It has been a very educational experience for the guideline panels, where we also focus on active patient partnership.
Our work with practical issues started out with our SHARE-IT tools for shared decision-making (paper attached). Heavily inspired by - and in collaboration with - Victor Montori and his groups´work on consultation decision aids we quickly realised this needs to be included in guidelines. There are however a number of questions to be answered through proper research, when we start including practical issues in guideline development. And how about evidence synthesis and systematic reviews, should they also include practical issues and best research evidence from different sources? How much trust do we place in statements about burden/ practical issues.
This is a focus for research and innovation in MAGIC (with features already embedded in our MAGICapp) and I include Anja Fog Heen and Thomas Agoritsas from our team here. They have given this a lot of thought and I am sure they can provide more details.
Best, Per
Professor of Medicine, University of Oslo, Norway
Chair, MAGIC Evidence Ecosystem Foundation
"Implementation of medical treatment regimens demands a lot of time and
effort and can result in substantial burden for patients with chronic
conditions. Guideline recommendations, however, are traditionally made
from a perspective that places the highest value on achieving certain
clinical outcomes (such as reducing shortness of breath or increasing
survival). More recent guidelines may consider patients’ values and the
acceptability and feasibility of the recommended action, but the
treatment burden is not made explicit. This makes it hard for patients
to make informed decisions about treatments in line with their values
and capacity".
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