NKF Live series event focuses on treatment, patient view on CKD-associated pruritis
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The National Kidney Foundation recently hosted a live event, as a part of its NKF Live series, to discuss uremic pruritus.
The condition, also known as chronic kidney disease-associated pruritus (CKD-aP), can occur in advanced kidney disease and is associated with chronic itching.
Moderated by Gary Bronz, NKF project/product director, the event included comments from Dawn Edwards, a patient with CKD-aP, as well as treatment and diagnosis advice from Tariq ShafiMD, MHS, the John D. Bower Director in the division of nephrology at the University of Mississippi Medical Center.
Edwards spoke about the difficulties of not only living with the condition, but also the difficulties patients can encounter when speaking with medical professionals.
“This type of itching, it feels like you’re itching from the inside out,” Edwards said. “One of the things that was particularly disturbing about it is when I did speak to my medical team about it, it was almost like you were patient shamed.”
She said medical professionals often point to phosphorous levels and patients' eating habits as the cause of itching, without addressing the potential for CKD-aP.
“Studies after studies have shown that phosphorus and itching are not related to each other,” Shafi said. “If somebody has itching, we need to start to think of other reasons that the itching may be there and not just blame phosphorus for everything that is going wrong.”
Living with CKD-aP
Shafi and Edwards also gave advice to patients with CKD-aP.
“[When] I was getting those dialysis treatments more frequently, I noticed that I started to feel better, not only with the itching, but an overall better sense of well-being,” said Edwards.
Shafi recommended that patients moisturize dry skin regularly, reduce hot showers and avoid both vigorously rubbing after showers and scratching itchy areas on the skin.
“Trying to break that cycle is important,” said Shafi.
Edwards also discussed the impact of CKD-aP on a patient’s well-being.
“When you’re scratching all the time, you avoid social situations, because you’re embarrassed about it,” said Edwards. “You may think others think that you have a drug problem or that your hygiene is not up to par. So, it can be like a ‘black eye’ for your lifestyle.”
Self-advocacy
According to Edwards and Shafi, self-advocacy is a key tool for patients with CKD-aP.
“From a provider perspective, I would like to say to the patients that if you have itching, if you have these symptoms, do talk to your provider,” said Shafi. “I understand many times talking to the doctors can be intimidating. And sometimes, they may not answer the question right away. And if that’s the case, talk to your care team, talk to the nurses [and] talk to the social workers about how best to approach this problem, but don’t give up on it.”
Edwards learned the importance of self-advocacy from her own experiences with CKD-aP.
“The most important thing that you can do for yourself, is to advocate for yourself. Speak up. Have that relationship with your care team, whoever it is, and don’t suffer in silence,” said Edwards.
Reference:
Shafi T, et al. NKF Live Event: Itching (pruritus) and chronic kidney disease: A doctor patient discussion. Presented on Sept. 16, 2022. Available at: https://www.facebook.com/nationalkidneyfoundation/videos/itching-pruritus-and-chronic-kidney-disease-a-doctor-patient-discussion/2864864740489459/.
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