Table 2.

Perspectives on whether the health care system meets their needs and what improvements could be made gathered from people with chronic kidney disease through the Facebook groups “Emodialisi Domiciliare: questa sconosciuta!,” (“Home Hemodialysis: the unknown!”) “#Dialisi Peritoneale,” (“Peritoneal Dialysis”) and “Emodializzati e Trapiantati di Rene!” (“Hemodialyzed and Kidney Transplanted!”) in November 2021

Domain	Specific recommendations
Burden of symptoms	•“My nephrologist failed to resolve posthemodialysis problems: weakness, hypotension, very frequent vomiting.”
	•“Sleep deprivation, pain, itch, fatigue, psychological problems are considered inevitable aspects of dialysis treatment and are often not addressed. I stopped asking for help regarding these issues because it appears that nothing can be done.”
	•“Often, when I ask for a painkiller during hemodialysis, it is denied.”
	•“If I have symptoms and I suspect that my body weight is too low, nothing is done to re-evaluate it despite my questions. I have to beg for bio-impedance analysis.”
	•“Diet is an unresolved issue, and nutritionists with experience on dialysis patients are lacking.”
Psychological and social support, including logistic issues	•“The network of support and psychological support (self-help groups, for example) to help patients and relatives is totally missing. As the wife of an end-stage kidney disease patient, I can say that it changes the life of the whole family.”
	•“In dialysis, the main concern has been to provide all the material tools and supports to obtain the adequacy of the treatment and guarantee access to it. The psychology of patients and caregivers, as well as social assistance and family support, have remained in the background.”
	•“There is no possibility to choose the dialysis shift: to dialyze in the afternoon, I had to move to a different, faraway dialysis unit.”
	•“Dialysis units should better support patients in the process of kidney transplant list registration. I was left alone organizing all the exams.”
	•“Family caregivers of home dialysis should be better followed by the dialysis unit, including a financial incentive.”
	•“Transport to the dialysis unit is a significant problem: more home dialysis is the answer.”
Lack of communication/ information	•“There is a lack of information on home hemodialysis. I discovered the existence of this practice after 2 and a half years of dialysis in the hospital, only through a Facebook group. No one had told me about this possibility. Now I am on frequent home hemodialysis, and the postdialysis problems disappeared: it changed my life.”
	•“Nephrologists in dialysis units lack knowledge, or they do not communicate properly.”
	•“We need a little more humanity, sensitivity, availability.”

Table created from patient perspectives gathered, translated, and presented at the consensus conference by Maurizio Gallieni, MD. Quotations have been included with permission.