A patient voice from Nancy Verdin on the CYCLE HD trial
Before my diagnosis, I hadn’t realized that my level of fitness would have such a strong impact on my adjustment to living with kidney failure. After being diagnosed, even limited activities such as walking to work, walking at work, or by necessity climbing the stairs to my apartment still served to support my recovery; it didn’t even occur to me to stop being active. I see this paper as playing a part in the perspective of wellness and recovery in kidney disease, with the additional benefit of looking at the left ventricular benefits of exercise during dialysis.
The paper is carefully written with a lot of detail on how the study was done and the results that were found. The overall findings determined that the intervention group showed a reduction in left ventricle mass at the end of the 6-month intradialytic exercise program. The authors were not able to generalize their results due to sample size and perhaps a lack of diversity among the participants in both the control and intervention group. There was a brief discussion about the effects of fluid overload in left ventricle mass and factors that could not be controlled in this study.
As a retired occupational therapist, I was particularly interested in the measurement of physical activity and quality of life. From lived experience I felt that the relatively short duration of 6 months may not have been sufficient to see a measurable change in physical function using the tests they chose. The increase of muscle mass and endurance tends to take longer for people with kidney failure than the healthy population and is often easier to identify in changes in activities of daily living, (e.g. “I can walk easily around the house”; “I feel safer in the shower”). I also found that the quality of life measures was perhaps not as accurate of what the patient/family may have experienced. I looked up both the physical assessment and the quality of life measurement tools, both are quantitative and miss the patient/family lived experience. When doing analogue scales many patients respond according to how they feel in the moment, even if directed to think about the past month (they can’t remember that far back (can you?). Another aspect to analogue scales is that life with a chronic condition can fluctuate widely from day to day. To distill it down to a single number can be very difficult.
Lastly, the physical function and quality of life measures were identified as secondary, hence not really given a lot of space in the research. This is really unfortunate as there is a lot to learn from participants about how intradialytic cycling impacts their lives and what their experience is while doing it, including the reasons why they declined cycling and how that could have been mitigated. In future patient-directed studies, I suggest that the physical and practical impact of regular exercise and activity take a larger, more balanced part of the study. Learning from the patient and family experience (sometimes families and caregivers see what the patient does not) will give the outcomes greater context and more meaning. When non-patients or families interpret data, they can only do it through their lens and often on assumptions. With the input from patients and their families, the opportunity and reasons for implementation become clearer, along with the potential for making it happen.
Nancy Verdin BSc.OT(ret), PaCER
Nancy Verdin has been a patient for 33 years, on permanent hemodialysis for 23, 19 of those at home. As a retired occupational therapist, she has been a strong advocate for wellness and recovery in the kidney community and other’s living with chronic illness. Helping people learn to live well with their disease makes it a part of their lives rather than all of it. This includes activity and exercise along with energy management and building a strong support network. Her Patient and Community Engagement Research (PaCER) network brings the patient and family experience and voice to the forefront of research, creating a balance of quantitative data with the patient/family perspective into the analysis and context of the interpretation of the results. She is based in Alberta, Canada.