How Do the ASCEND Study Findings Help Us as Dialysis Patients?

A Trial of Sertraline vs. Cognitive Behavioral Therapy for End-stage Renal Disease Patients with Depression (ASCEND),¹ supported by the Patient-Centered Outcomes Research Institute, found that antidepression medication is roughly equal in efficacy to talk therapy in its ability to improve the well-being of patients who are on hemodialysis.

Cognitive behavioral therapy (CBT) is a type of talk therapy. In CBT, patients learn to change patterns in their thinking to improve how they feel, and sertraline is a medicine used to treat depression.²

This suggests that both forms of treatment can be effective options for patients dealing with depression and anxiety related to their condition. These findings resonated with members of the Kidney Patient Advisory Council (KPAC), and we observed the following.

As people dealing with kidney failure, it can be difficult to adjust to being on dialysis, the time it takes, the restrictions on your life, what you eat and drink, and how you feel. Some of us adapt more easily, while many others struggle with feelings of loss, anger, and frustration. Many of us lose our jobs and friends, relationships break up, and divorces are common. For some, this can be too much to handle. For those care providers who work with us while we are on dialysis, just imagine if it was you or your loved one sitting in the chair dealing with these losses.

A KPAC member shared: “There was a young man who had his own carpentry business and was very successful. He had a daughter who stayed with him off and on. When he started dialysis, he struggled to get used to the impact it had on his lifestyle. His business started going downhill, and he was having to push more and more of his work on his partner. One evening during his treatment, he told his nurse he was really having trouble being on dialysis. She brought him a coloring book to help pass the time. About 3 weeks later, his daughter found him on the floor at his home. He was taken to the emergency room, where they found he had nearly drunk himself to death. Although this story is extreme, sadly these types of things happen.”

Many times, those of us on dialysis do not realize that we are depressed. We think, “Well, this is dialysis; do not expect me to be happy about it.” We often conclude that depression and anxiety are a natural part of the dialysis experience and should be expected and tolerated. We become short-tempered and lash out against the ones we love the most, or we disconnect from people and things we used to enjoy.

The physical and emotional stressors associated with dialysis also can contribute to feelings of anxiety and low mood. We must adjust to dramatic lifestyle changes and cope with the knowledge that our health is deteriorating. These factors can lead to feelings of fear, loss, helplessness, and a lack of control. Dialysis can also be a very time-consuming and inconvenient process.

Members of the KPAC met, and we began to talk about when we first started treatment. We all had some level of anxiety.

“On several occasions, I experienced tension headaches, felt my heart racing, my palms sweating, and lost my appetite. In the ensuing months, I went through denial, anger, and bargaining. The pain I have experienced from each needle inserted in my arm, it was all too much.”

“At first, I was unsure of what was causing my anxiety. I was constantly worrying about my health and the future of my condition. I was scared of the unknown and felt overwhelmed by the thought of having to manage a chronic illness. I found myself worrying about the future and how I would handle the physical and emotional changes that would come with the progression of my kidney disease.”

In a dialysis facility, you are also faced with other patients' issues and declining health. Most of us are not prepared for the experience.

“I remember the first time I saw someone pass out. The patient next to them yelled at the nurse, and she ran over and was able to get her back to talking.”

“I had got to know a woman who sat across from me, I cannot remember her name. One day during dialysis, she dropped unconscious and slid out of her chair. The tech ran over, and they started doing CPR right on the floor in front of me. I tried not to watch.”

“I cannot really share these kinds of experiences with my family; it will just scare them.”

It can be helpful for patients to develop strategies to cope with their anxiety and manage stress. In addition, medications, such as antidepressants and antianxiety medications, can also be effective in reducing anxiety in dialysis patients. Patients can also benefit from relaxation techniques such as deep breathing, meditation, and yoga. Finally, social support is important, and dialysis patients can benefit from interacting with other dialysis patients and health care professionals.

The KPAC has written a toolkit titled “The Dialysis Patient Depression Toolkit”³ for patients. The toolkit includes a patient self-assessment, which patients can use to check in with themselves. If you think you might be depressed, ask for help from your physician or social worker. You do not have to go through this alone. Check it out; life is too short to be unhappy.

The results of this research could have a significant impact on the dialysis patient community. One potential benefit is that it could increase access to treatment for those of us who may not have previously been able to access or afford talk therapy. In addition, the knowledge that both forms of treatment are effective may help reduce the stigma around taking antidepression medication for dialysis patients and may make available the full spectrum of choices for us.

Disclosures

P. Bologna and P. Bologna's spouse report self-employment and ownership interest in 1300 Management. P. Bologna reports consulting for 1300 Management. P. Bologna's spouse reports self-employment and ownership interest in Kercheval Development, Bologna Building Company, 81 Investment, 13199, LLC—all real estate–based. D.L. Forfang reports employment with ASN Kidney Health Initiative (KHI); consultancy for Ardelyx Inc Scientific Advisory Board, ASN, CareDX, HSAG, Responsum, and University of North Carolina Kidney Center; honoraria from Health Service Advisory Group; advisory or leadership roles for HSAG ESRD Network #17 Board Member, National Forum of ESRD Networks Board Member, National Forum of ESRD Networks Kidney Patient Advisory Council Chair, Kidney Health Initiative Patient Advisory Committee, National Kidney Foundation, SONG Group, European Association for Dialysis, Arbor Research and Unity Health Toronto OPPUS, and UCSF Kidney Project Patient Advisor; and other interests or relationships as a volunteer for The Forum of ESRD Networks as Kidney Patient Advisory Council Chair and Board Member, volunteer for ESRD Network #17 as Patient Advisory Committee Chair and Network Board Member, volunteer for the NKF as a member of their Public Policy Committee, volunteer for the NKF as a Regional Leader of their Kidney Advocacy Committee, and KHI PFPC Member. P. Gee reports self-employment at iAdvocate, Inc., a health and wellness organization, and P. Gee Consulting, LLC; consultancy for FOUNTAIN EAC (Bayer International); honoraria from American Kidney Fund, Amgen, APOLLO APOL1 Long-term Kidney Transplantation Community Advisory Council (CAC), Bayer International, Boehringer Ingelheim, CareDX, FOUNTAIN (Bayer International), NephCure International, Patient Family Advisors Network (PFA Network), Patient Family Center Care Partners (PFPC partners), Robert Woods Johnson Foundation, Traverse, and Vertex International; advisory or leadership roles for KHI Patient Family Partnership Council Chair, KHI Strategy BOD Member, Univ. of Washington Center for Dialysis Innovation (CDI) Patient Advisory Board and Organ Procurement Transplant Network Kidney Transplantation Committee member, National Kidney Foundation Health Equity Advisory Board, National Kidney Foundation Kidney Advisory Council DEI Advisory Board, FOUNTAIN Executive Advisory Committee (Bayer International), and AHA Cardio-Kidney Metabolic Health Patient Advisory Group; speakers bureau for CareDX; and other interests or relationships as AAKP Ambassador, AKF Ambassador and Kidney Health Coach, NKF KAC, UNOS Ambassador, PCORI Ambassador, NCC PFE-LAN SME, KHI PFPC Member, KPAC Member, Quality Insights Renal Network 5 PAC Chair, ASN Diabetic Kidney Disease Collaborative Task Force, CareDX Ambassador, Kidney 360 Patient Perspective Ambassador, End Stage Renal Disease Health Equity Advisory Board, National Kidney Foundation Spring Clinical Meeting Planning Committee, and KHI APOL-1 Steering Committee. P. McCowan reports other interests or relationships with ASN Kidney Week Education Committee, Forum of ESRD Networks, National Kidney Foundation, National Quality Forum, and UNOS-OPTN Kidney Committee. T. Nelson reports advisory or leadership roles for United Way of Chester County, Penn Medicine—Chester County Hospital, Penn Medicine, Quality Insights Renal Network 4, Quality Insights, Gift of Life—Philadelphia, PA, and Kidney Patient Advisory Council (KPAC), All remaining authors have nothing to disclose.

Funding

This article was part of a grant to disseminate the ASCEND study results, PCORI contract number EUD-14923.

Author Contributions

Writing – original draft: Derek L. Forfang.

Writing – review & editing: Bob Crabtree, Patrick Gee, Jovita Solomon, Patricia Bologna, Timmy Nelson, Terry Peeler, Precious McCowan.