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The article we will be discussing today is:

What are the information needs and concerns of individuals with Polycystic Kidney Disease? Results of an online survey using Facebook and social listening analysis

Tiffany Ma and Kelly Lambert (2021).

BMC Nephrology Volume 22 Issue 263

https://doi.org/10.1186/s12882-021-02472-1

Journal Club Discussion

“Are there foods that are less stressful on kidneys… or things I should avoid besides the broad low-sodium recommendation?” – study participant with PKD

As a PKD patient or family member of someone with PKD, have you ever returned home from a doctor’s appointment confused about something the doctor said, or curious about what to do or eat to help preserve your kidneys?  You then opened your computer to do a bit of searching. 

There have been very few studies to date that have looked into what information PKD patients are really looking for. The study by Tiffany Ma and Kelly Lambert documents what people with PKD are searching for online, what they perceive as major challenges of living with PKD, and overwhelmingly, the question of what do I eat?

Facebook groups can be a wonderful community-building tool to share information with other people who are living with PKD. Perhaps you even found this blog post through a PKD-oriented Facebook group. If that’s the case, you are not alone. Out of 536 participants who completed surveys for this study, 69.9% of them used Facebook to find information on PKD. The accessibility of online resources, and the feeling of camaraderie and support strongly resonated with the participants. But what are they looking for in these online spaces?

What do we want?

Information about the type of diet and nutrition guidelines for PKD!

When do we want it?

From the time of diagnosis!

A main conclusion from this study was: “The major information need expressed by participants with PKD was for dietary information.”

81% of participants searched online for PKD-specific dietary information. Ideally, participants wanted information from their primary care physician or nephrologist when they were initially diagnosed. They were hopeful they would be provided with online resources or pointed in the direction of credible information. The internet is a vast space that can provide a plethora of information. However, the internet also contains a large amount of contradictory or unvalidated information. 

Another main conclusion of this study was: “…many participants in this study expressed a tangible sense of frustration and confusion because of vague and inconsistent dietary information.”

…and patients reported… “… inability to access renal nutrition expertise as well as  inconsistent dietary information from primary care physicians and nephrologists.”

“Frustrations about the lack of specific information led many to conduct their own research online.”

These frustrations are illustrated in the words of PKD patients themselves, as cited in this study:

“…I just (want) simple meal plans… and recipes… according to what stage you’re in, how much protein, phosphorus and potassium…”

“(my biggest concern) is… am I doing the right thing (with my diet)? What should I do?”

“(I want information on) the effects of the Keto diet, intermittent fasting, & other dietary options potentially beneficial to those with PKD”

“Educating nephrologists worldwide. I find myself being more knowledgeable on modern clinical trials, medicines, diet, etc. for PKD patients”

So where do you go to find this information? 

“Creation of high-quality evidence-based resources for individuals with PKD is required” (Ma and Lambert, 2021). Expanding upon this conclusion, these high-quality resources also have to be easily accessible and more well-known among healthcare professionals treating people with PKD. 

Ma and Lambert wrote: “Programs such as the online Ren.Nu PKD Nutrition Program may help improve access to specialised credible dietetic care for people with PKD.”

We couldn’t agree more and thank the authors for the shout-out! 

The scientists at  Santa Barbara Nutrients are proud to have contributed to the development of the Ren.Nu program, which takes patients step-by-step through understanding the dietary requirements of PKD. Ren.Nu was developed around a plant-focused, clean and kidney-safe diet that avoids renal stressors while achieving the metabolic state of ketosis. The approach is the result of a collaboration between researchers and clinicians who’ve come together to provide individuals with dietary recommendations and interventions for PKD.  To learn more about this novel concept, you can watch an interview with Ren.Nu co-founder Jessiana Saville, where she shares her perspective on nutrition therapy for PKD.

The Ren.Nu program also runs a popular Facebook group that is moderated by dietitians and contains lots of free resources and tips along with great discussions and sharing of experiences by PKD patients. Anyone with PKD can request to join: https://www.facebook.com/groups/pkdnutrition 

Does the Ma and Lambert article sound like your journey of searching for PKD information? 

What do you commonly search for and what information do you wish you were given earlier on? 

References:

Ma, T., and Lambert, K. (2021). What are the information needs and concerns of individuals with Polycystic Kidney Disease? Results of an online survey using Facebook and social listening analysis. BMC Nephrology, 22(1) 263. https://doi.org/10.1186/s12882-021-02472-1; PMID: 34261447

One Reply to “Dietary Ambiguities with Polycystic Kidney Disease (PKD)”

  1. All PKD patients want to know how to find a living donor eventually. Such a difficult process. There is no structured process set by NKF or PKD Foundation nationall, no national bank or listing to join etc. Thanks.

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