Patients: What They Really Want to Know about Their Disease

When we decide that 30-day mortality to repair an abdominal aortic aneurysm (AAA) is at least twice as high with conventional surgery compared against endovascular treatment, many of us think choosing a strategy is far from hard, and recent stats show exactly that. However, are we sure our patient agrees with us, or at least understands what our choice involves?

Helping patients make such vital decisions may vary depending on the clinical situation. As regards AAA (though this could be applied to any other condition, even when we decide against a procedure) this can be especially complex.

Patients must be clearly informed about absolute risks (rather than relative).

This study looks at the way complications are informed, especially mortality, compared against the information provided to patients on these same events when AAA repair is elective.

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Of 47 contemporary randomized and observational studies or registries, only two presented differences in mortality risk in absolute terms.

This without taking into account the lack of common definitions, because mortality will be mortality, but the softest points should be analyzed according to each study definition, which have been always different.

We should improve adhesion to the systematic reporting of events, standardized, absolute risk differences especially, to facilitate communicating evidence to patients for them to be able to make informed decisions.

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Our patients and their families might have a different opinion of what is important, different from what we usually consider important (e.g.: 30-day mortality or vascular complications).

For them the chance to remain independent, to be free of pain or disability, to avoid amputation or to quickly return home might be more important than survival per se.

This disagreement is part of the agenda of the next European Society of Cardiovascular Surgeons Guidelines to be presented in 2019. For the first time, patient perspective will be taken into account, and it is being elaborated on together with patients and their representatives.

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Also defining and standardizing a minimum of key events with the same criterion to report all studies on AAA treatment to come.

This will let us provide the adequate and necessary information for our patients, and their families, to decide the best course of action.

The question “what does the patient want to know” has no answer. Each patient might want different things at different times in the course of their treatment, and even has the right not to know.

Realizing what patients are prepared to know about their condition and the risks involved is an art we should practice, one that should have the highest priority, bearing in mind we do not treat diseases but rather persons.

Original Title: What Does the Patient Really Want to Know?

Reference: Anders Wanhainen. Eur J Vasc Endovasc Surg, article in press.

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