Beyond “fine”: New tools help patients and providers talk about CKD symptoms

For many people with chronic kidney disease (CKD), feeling unwell can be commonplace. The symptoms associated with CKD and dialysis can come on so gradually that people may become accustomed to a certain level of unwellness.

“I have had patients tell me they feel fine, until their partner reminds them that they have not been sleeping well or they are constantly scratching. They have forgotten what it is like to feel completely well,” says Jane Ridley, a nurse practitioner with the regional renal program at London Health Science Centre.  

As a result, symptoms may be under-reported and under-treated.

Your Symptoms Matter, a project of the Ontario Renal Network (soon to be part of Ontario Health), helps people on dialysis to reflect and report on their physical and psychological wellbeing. After patients complete a standardized questionnaire that asks them to rate the severity of their symptoms, nurses review the assessment and recommend action, such as a referral to a social worker or dietitian.

“Nurses are always talking to patients in the dialysis unit. Your Symptoms Matter gives us a reason to pull up a chair and really talk about what’s going on. It helps us make sure we have left no stone unturned when it comes to addressing their symptoms,” says Jane, who is the lead for the project at London Health Science Centre.

Reviewing the questionnaire may also be a stepping stone to a goals of care conversation, which many people – patients, families and healthcare providers alike – can find challenging to start. “When we talk about symptom management, sometimes we have to tell patients, ‘I'm sorry, but this isn't going to get any better.’ This opens the door to talking about advance care planning,” says Jane.

In 2017, the Ontario Renal Network launched Your Symptoms Matter in nine dialysis units across Ontario. Initial feedback from the project showed that patients’ symptoms frequently change over time. “Those trends highlight the importance of routine screening,” says Jane.

Patients and healthcare providers also reported that they want additional help with identifying and managing symptoms. In response, the Ontario Renal Network developed two sets of resources. The Symptom Self-Management Guides help people with chronic kidney disease recognize symptoms, manage them and know when to talk to their healthcare team. The Symptom Management Resources offer guidance to healthcare providers in assessing and managing common symptoms.

The project is now expanding, and as of September 2019 Your Symptoms Matter will be offered to people on dialysis in 15 additional sites.