Table 5 Exemplar quotes from free text questions in the online survey
A challenging journey |
The biggest challenge is the physical pain. I stay active and continue to live my life but there are days where it is almost unbearable and severely affects my mental health |
(my biggest challenge) is pressure to have children before kidney’s fail |
A need for information |
I want to know….the best diet for managing early progression of the disease … best way to implement it in order to mitigate other potential risks that might be associated with it (e.g., cardiovascular disease)? |
Having a Facebook group for diet and nutrition or a website devoted to diet and nutrition for PKD would be awesome |
Make information available at Nephrologist…supply new patients with links, app info, websites etc…Otherwise you are left with the internet to find the info and it may not always be reliable |
Doctors…should be encouraged to make a referral to a dietician at the early stages of this disease |
What the recovery of kidney transplant, along with nephrectomy, is really like |
What can I do to slow down the growth of the cysts? |
Dietary concerns |
There is limited access to dietician via health insurance & doctors don’t seem to make priority for those in early stages of disease |
Most dieticians will probably say low salt, and healthy diet. Not very specific |
Are there foods that are less stressful on kidneys in general, or things I should avoid besides the broad low-sodium recommendation |
What research is there on benefits of specific dietary components ? |
(my biggest concern) is… am I doing the right thing (with my diet)? What should I do? |
A need for practical resources |
Data that’s understandable to the general public about how impactful healthy diets are for those who follow them vs. those who don’t |
Simple meal plans …and recipes…according to what stage you’re in, how much protein, phosphorus and potassium |
Educating nephrologists worldwide. I find myself being more knowledgeable on modern clinical trials, medicines, diet, etc. for PKD patients |
Make (the information) really simple and compelling |
A table or matrix that would help individuals identify what is suitable for them would be helpful |