LaVarne A. Burton
President and CEO, American Kidney Fund
Living with kidney failure is incredibly challenging for patients and their loved ones. Dialysis is a complex, demanding process that requires individuals stick closely to treatment for the best possible outcomes. Unfortunately, there are often unforeseen roadblocks standing in the way of adherence when adjusting to a rigorous new routine that requires a specific diet, critical medication, and intensive treatment. The risks posed by missed dialysis sessions are grave: nonadherence can lead to adverse health effects, hospitalization and even death.
Understanding why treatment regimens are so tough to follow—and what makes it difficult for patients to stick with them—are important first steps in helping patients with treatment self-management. Recently, the American Kidney Fund (AKF) released a new survey report that sheds light on the challenges kidney patients face in treating this chronic illness.
Nearly 1200 dialysis patients and 400 renal professionals shared their experiences via the survey. Some of the key findings confirm what we already knew about treatment adherence; others caught us by surprise. Overall, we see clear patterns in lack of adherence related to age, mental health status, and communication between patients and providers. The findings are just a piece of the nonadherence puzzle to solve; it is important for the renal community to work together to address these issues at every stage of the care process so that we can help patients live fuller, more complete lives despite their diagnosis of kidney failure. The full survey report is available on AKF’s website.
Younger patients are more likely to struggle with prescribed treatment.
Patients aged 18 to 39 reported lower adherence to nearly all treatment recommendations, including medication and diet regimens, compared with patients in any other age group. Many left dialysis sessions early and were more likely to skip sessions altogether. They also indicated feeling depressed nearly twice as often as older patients. Though living with kidney failure is difficult regardless of age, it is important that we consider tailored support for different age groups to meet their unique needs.
Depression is a leading contributing factor to treatment nonadherence—regardless of age.
The National Institute of Mental Health classifies depression as a common but serious mood disorder that causes symptoms that can severely impact one’s feelings, thoughts, sleep, appetite, employment, and participation in common daily activities.1
More than 40% of survey respondents reported that depression, nervousness, or fear had held them back from required treatments in the previous month—they were more likely to skip dialysis sessions and medication and were less likely to follow recommendations for fluid intake and exercise. Some patients who reported feelings of depression noted discomfort talking to their healthcare teams. It is clear there is a great need for better interventions, including screening, counseling, and treatment, to help patients manage depression.
All of us in the renal community can use these insights to help address challenges patients encounter every day. That means increasing awareness of how patient moods, attitudes, and beliefs affect treatment and identifying ways to help address lifestyle changes and empower patients to become more fully invested in their treatment planning. Finding ways to adjust to a demanding dialysis schedule while still maintaining the things patients love and need to do requires support from family, friends, and caregivers. With careful planning to ensure dialysis sessions, medication, diet, and other key aspects of treatment are balanced, we can help patients prepare for and, ideally, avoid the depression, nervousness, and fear that can keep them from their treatments.
AKF will continue to use the insights from this survey to provide the best possible support for patients with kidney disease. We have used these findings to develop programs, educational tools, and new materials that shed light on the treatment process and equip patients and providers with information they need to make confident care decisions.
We should all keep these insights in mind as we continue to explore the questions posed by nonadherence. It is the responsibility of all of us within the renal community to help make positive changes in the lives of patients with kidney disease—starting with encouragement and education around the importance of adherence to treatment—so that patients are better able to lead fulfilling, balanced lives.