DEBRA Ireland is leading an international effort to develop a series of clinical practice guidelines for EB. These guidelines have the potential to strengthen clinical care across all the different medicine specialities that EB requires. While this project is no easy task, we feel that it is one of the most important things that we can do to help people living with EB, both in Ireland and around the world. Here are 5 things about them that explain their importance.
- Clinical practice guidelines do what they say on the tin – they guide clinicians (doctors, nurses, dentists, physiotherapists etc.) in their decision-making, as they care for people with EB. In such a rare condition as EB, where there is limited clinical expertise, this guidance will be invaluable.
- Each EB guideline will contain recommendations for the best path to choose, when faced with a particular medical issue. In an ideal world, these recommendations should be based on scientific evidence. In EB, this evidence often doesn’t exist however and so the opinion of expert EB clinicians is also drawn upon.
- For each EB guideline, one clinical expert will take the lead in its development but they don’t do it alone. They work with an international group of clinical experts and also patients who assess the guideline to make sure that it makes sense in the reality of life for people living with EB.
- Clinical practice guidelines are not just for clinicians. With a condition as rare and as complex as EB, patients often become the true experts in their own condition and these guidelines will support them in their involvement in their own care.
- EB guidelines are already available on the topics of wound care, dentistry and pain management. They will be followed, in the not too distant future, by guidelines on cancer in EB and nutrition in EB. More guidelines will be developed in the coming years.