Patient perspectives shape study of kidney disease self-management

Project Lead Dr. Brenda Hemmelgarn (L) and Patient Lead Gwen Herrington (R)

How can we better enable self-management of chronic kidney disease, where appropriate, for adults? That’s the question one of Can-SOLVE CKD’s research teams is working to answer in partnership with kidney patients and family or friends who play caregiving roles.

“When we speak about self-management, we mean the patient being in charge of managing their chronic kidney disease, supported by their health care team,” says Gwen Herrington, Patient Lead for the research project, Strategies to Enhance Patient Self-Management of Chronic Kidney Disease.

“This is very important because it’s our bodies, and what it is happening is personal. We have to be in charge, making decisions with the help of great information and proven strategies, and then carrying through. There is strength in that, but most of all, it’s respectful. There are too many losses in this disease. Our ability to decide for ourselves how to manage doesn’t have to be one of them.”

Gwen is one of six patient partners working on the project, which aims to identify and test optimal strategies for self-management. The 19-member research team also includes clinicians, scientists and educators from a wide variety of physical and mental health disciplines.

As a patient partner, Gwen brings her lived experience of kidney disease to the team’s work. This includes more than a decade of living with focal segmental glomerulosclerosis, which eventually led to kidney failure. Part of her treatment included going on dialysis for two and a half years, and then receiving a living donor transplant in 2014, which greatly improved her health and gave her the ability to return to her career as a Public Health nurse.

In addition to perspectives offered by patient partners like Gwen, the research team has sought the input of dozens of patients and caregivers across Canada. Between July 2017 and January 2018, the team held six focus groups in Calgary, Lethbridge, Toronto, and London, Ontario, to explore the self-management experiences, preferences, and needs of adults with chronic kidney disease and their caregivers. Phone interviews were also conducted with individuals unable to participate in person. A total of 48 participants took part, including 33 patients and 15 caregivers, spanning British Columbia, Alberta, Ontario, Nova Scotia and Newfoundland.

The patient and caregiver input from these conversations complements the team’s other research efforts, including a scoping review of self-management literature (published in BMJ Open in early 2018) and a survey of chronic kidney disease clinics across Canada.

Project Leads Dr. Brenda Hemmelgarn and Maoliosa Donald report that three themes have emerged from the team’s work to date:

1. living with chronic kidney disease (e.g., managing diet, travel, medications, symptoms);
2. access to relevant and credible information; and
3. emotional, social and psychological support.

“These are all areas in which kidney patients and their informal caregivers can be empowered to manage aspects of patient health,” says Dr. Hemmelgarn. “With these themes as a guide, we will be able to better focus our efforts for our next big steps, which will be to prioritize individual strategies and decide what an overall self-management strategy will look like.”

This work is scheduled to take place at a team workshop in June 2018 in Calgary.

Later stages in the study will include refining and testing the shortlist of self-management strategies. As they do so, the researchers will measure a number of physical and mental health factors. This will include determining whether there is an improvement in patients’ ability to control their kidney disease, whether they experience greater well-being, and what level of satisfaction they have with this approach to care.

Reflecting on patient partner contributions to date, Dr. Hemmelgarn says the patients and caregivers involved are playing important roles in many aspects of the research process.

“In particular, they’ve read the summary of results from our scoping review as well as the qualitative results, and substantiated these results from a patient perspective. They also contributed to the questions and format of the focus groups and interviews. These contributions have provided us with valuable input that is giving us the ability to make our research more relevant to those living with kidney disease.”