How many of your kidney patients understand their disease and its progression? If they don’t understand their kidney disease, it’s unlikely they can successfully manage it and delay progression.

Kidney professionals were asked what issues they experienced with kidney disease patient education. Here is what they had to say.

Not patient-centered

A care team has access to myriad materials about kidney disease, but some advanced practitioners reported that those delivering the information don’t always consider the best time, place and method for each individual patient.

Education, all the time

Professionals suggest that education should be part of every patient visit, but within a standard 20 minute appointment window, it can be difficult for them to find the necessary time to focus on education.

One advanced practice provider said that while providers may have good information, they fail to understand their patient’s wishes, hopes and needs.

It’s important to keep in mind that kidney disease patients’ lives are often upended. Their livelihood is affected, they may have body image issues and their family dynamics may change. Patient education may need to include things like diet recommendations or ways to get restful sleep.

Expand to stage 3

Medicare currently pays for six hours of education for stage 4 kidney disease patients. Kidney care professionals state that if education can be expanded to patients with stage 3 kidney disease, it will allow patients to internalize the information.

“…Patients’ education must be in several stages, the professionals write. Initially, they often do not hear anything at all for several reasons: denial and fear of being overwhelmed, to name a few. Is our education addressing their health literacy level? Are we considering cultural views?”

Patient support networks

Peer counseling and peer support groups have received widespread support.

The difference of a patient hearing “I know you are upset” coming from a provider and “I was so upset when I had to start dialysis” coming from a fellow patient is immense. Some respondents suggested the best peer counselors were those who initially resisted dialysis vehemently.

Support from peers can influence a patient’s treatment and mood, and so can anecdotes from their community.

Hearing about their neighbor’s brother’s bad dialysis experience or that their friend’s sister died while on dialysis can lead patients to believe certain treatment modalities are worse than others.

We must tailor patient education for the patient’s condition, their understanding, their beliefs, and their needs to help them manage their disease.