The invention of hemodialysis in 1943 was, at its implementation, immediately recognized as a bridge for patients with kidney failure (1). In 1947, dialysis was brought to America and immediately envisioned by John Merrill, a pioneer in dialysis, as a stopgap measure for patients awaiting a kidney transplant (2). The first kidney transplant was performed by Joseph Murray in 1954, but it would not be until 1960 that Belding Scribner first used dialysis as a means of sustaining chronic patients (2).
Dialysis and transplantation have both been envisioned as ways to rehabilitate patients with ESKD to return to an optimal lifestyle, including gainful part-time or full-time employment where appropriate and consistent with their aspirations. This was the shared understanding among the elected leaders and patient advocates involved, including the patient founders of the American Association of Kidney Patients (AAKP), when Medicare coverage was passed into law by the US Congress in 1972 and signed by President Richard Nixon in 1973 (3). AAKP has consistently viewed kidney disease as both a health care and workforce issue and understands that there are distinct barriers affecting the well-being of the patient that prevent those with a chronic illness from returning to work. I understand and share this perspective more fully after having endured an illness in the past (4).
General observation and the medical literature both demonstrate that the majority of patients worldwide undergoing dialysis are not employed. In a systemic review and meta-analysis of 31 studies, the employment rate for patients on dialysis was 26% (range, 11%–60%) (5). This varies from country to country and between modalities. Patients on peritoneal dialysis are more likely to work than those receiving hemodialysis (5). The ability to work is understandably worse in those with diabetes and in those with the comorbidities associated with it, namely peripheral vascular disease, heart failure, and cognitive decline. Patients who are not limited by these comorbidities still experience the shortfall in expectations, which is not related so much to the person as it is to the challenge of navigating the constraints of hemodialysis. Transplantation helps to remove the barriers that prevent one from working—and working effectively. This is why AAKP works diligently to make certain that patients with kidney disease are informed of their care choices, including preemptive transplants.
The paper “Employment Status and Work Functioning among Kidney Transplant Recipients,” published in this issue of CJASN, analyzes the characteristics of employed patients with kidney transplants (6). The study contrasts 688 patients with kidney transplants of working age (51±11 years) with a control of 553 community-dwelling adults and 246 kidney donors. Transplanted patients had an employment rate of 56%. Work functioning was evaluated in transplanted patients. A higher education level, preemptive transplantation, and receiving a living donor transplant were factors associated with work functioning. Data were obtained through the responses to a validated Work Role Functioning Questionnaire (WRFQ; version 2.0) that measured how emotional and physical issues affected the ability to perform a work role.
WRFQ scores improved with transplantation. The strongest negative association with work functioning was fatigue, followed by concentration and memory problems, restlessness and anxiety, muscle weakness, and depression. Transplanted patients worked shorter hours and were more likely to have jobs that are mentally rather than physically demanding when compared with the community-dwelling employed adults.
The need and general desire for patients on hemodialysis not in retirement to continue a working and independent lifestyle are often thwarted by the dialysis procedure, medications, and complications associated with underlying diseases. Cognitive decline or severe physical conditions preclude employment, but for many, the ability to continue working is in the planning and strategy that begins long before the commencement of KRT. For some, employers are unconsciously biased against hiring a patient with an underlying disability, regardless of whether it will play a role in one’s performance.
The real takeaway message is that patients with transplants do well during employment despite challenges and obstacles. Early education about KRT can help patients and employers work as a team, design a retraining option, and allow for the transition to a less physically demanding job. The paper by Knobbe et al. (6) also identifies fatigue as a major factor interfering with work function. Identifying therapeutic maneuvers that reduce fatigue and improve the health of the patient serves as a challenge to clinicians. Patients with CKD who undergo a preemptive kidney transplant or undergo home dialysis have better outcomes. This winning strategy will enable patient independence, gainful employment, and the preservation of the quality of life—while honoring the original intent of the law.
Disclosures
S.Z. Fadem is the chairperson of the Medical Advisory Board for the American Association of Kidney Patients.
Funding
None.
Acknowledgments
The author thanks all patients and advocates, especially those with AAKP and their medical allies. The hard work over several decades has better aligned kidney treatments and innovations to the aspirations of patients.
The content of this article reflects the personal experience and views of the author(s) and should not be considered medical advice or recommendation. The content does not reflect the views or opinions of the American Society of Nephrology (ASN) or CJASN. Responsibility for the information and views expressed herein lies entirely with the author(s).
Author Contributions
S.Z. Fadem conceptualized the study, was responsible for formal analysis, was responsible for resources, wrote the original draft, and reviewed and edited the manuscript.
Footnotes
Published online ahead of print. Publication date available at www.cjasn.org.
See related article, “Employment Status and Work Functioning among Kidney Transplant Recipients,” on pages 1506–1514.
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