#NephMadness 2018: Picks By A Patient and Advocate

Fiona Loud

Fiona Loud is the Policy Director at Kidney Care UK (@KidneyCareUK), the leading kidney patient support charity in the United Kingdom. She is a kidney transplant recipient and a fierce patient advocate. She is also a member of this year’s Blue Ribbon Panel. Follow her @FionaCLoud.

Competitors for the Women’s Health Region

Reproductive Planning vs Menopause in CKD

Preeclampsia’s Global Impact vs Prematurity’s Global Impact

I had noticed #NephMadness popping up on my Twitter feed from time to time but had no idea how it worked. Also, many of the areas being studied seemed a mile away from my areas of expertise. What is bracketology anyway – am I ever going to play basketball? So, I confess, it was a surprise when Joel Topf aka @kidney_boy messaged me to ask whether I could take part and promised it would be ‘lots of fun’! Thinking this would be an interesting new experience I jumped in – and so it has been – although I did not know there were sharks in the water.

Once I realized that the brackets and region business are all about ways of organizing the tournament and didn’t require me to learn basketball, I relaxed. That was before the 95-page document arrived in my inbox, exuding brain power and a vast range of ideas, every one of them of course having some relationship to patients and their treatments.

Amidst learning fabulous facts about animals, some of the regions seemed very important from a patient-centered angle. Directly influenced by my own experiences and knowledge gained in my job, I was drawn to women’s health, PD, transplant, pediatrics, and contrast. Whether seeking clarity on use of contrast – how are patients able to make good decisions when doctors themselves are not sure – or looking at ways to transplant more people, the teams all had their merits. And of course, patient-reported outcomes are something that I believe should drive research. I commend the huge efforts that must have gone into creating this work.

In the end, though, my pick is from the Women’s Health region and reflects the timely World Kidney Day theme for 2018. Families will be making decisions right now, and need the best information there is; neither reproductive planning nor the potential for preeclampsia and kidney damage are consistently attended to in the context of kidney disease. For both long- and short-term outcomes, reproductive planning should be part of an informed and shared decision. The recent #WKDchat summarizes these issues beautifully.

It seems that whether a patient has CKD, a transplant, or a history of AKI, their specialist is not likely to be the one discussing reproductive choices or giving contraceptive advice. If advice comes from a generalist it may not be personalized to their particular risk, or it may be over-cautious and steer a women away from parenthood. At a World Kidney Day event neatly named ‘Delivering Success,’  we heard story after story of patients who had been told they could not have a child, of those with premature babies, or who had been short of advice following transplant. These individual tragedies will continue to be repeated until or unless more physicians work with their patients to understand and support their choices. And because reproductive planning should come first, this is my pick.

My #WKDchat tweet summarizes it all:

– Post written by Fiona Loud. Follow her @FionaCLoud.

As with all content on the AJKD Blog, the opinions expressed are those of the author of each post, and are not necessarily shared or endorsed by the AJKD Blog, AJKD, the National Kidney Foundation, Elsevier, or any other entity unless explicitly stated.

Current Standings | NephMadness 2018 | #NephMadness | #WomensHealthRegion

 

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