Maintaining Employment: A Key Component of Health-Related Quality of Life for Dialysis Patients

I was speaking to a group of end stage renal disease (ESRD) patients at a symposium recently and met a 50-year-old man with polycystic kidney disease who had just started on in-center hemodialysis. He had been followed by a nephrologist for a number of years prior to progressing to ESRD, and had been well prepared by conventional standards to start dialysis while being placed on the cadaver transplant list. He had an arteriovenous fistula, and began dialysis uneventfully as an outpatient. He said that physically he was adapting well to dialysis, but was concerned and depressed because he quit his job when he knew dialysis was imminent. His doctor had not had a conversation about this issue with him and he didn’t know what to do or how he was going to continue to take care of his family. He asked me why dialysis patients had to stop working and he was surprised to hear me say that he could continue working, and that his doctor and dialysis facility should be helping him work through this issue and get back to work. This story is only too common.

I recently published a paper outlining a new paradigm for driving quality care in patients with ESRD.⁽¹⁾ The fundamental outcomes (largely biochemical, like Kt/V, and elements of metabolic bone disease management) must be excellent, but even if they are, this is not sufficient to achieve the key primary outcomes that are important to patients: better survival, fewer hospitalizations, a better experience of care and ultimately an enhanced health-related quality of life (HRQOL). In order to achieve these critical primary outcomes, the fundamentals must remain strong, but clinicians must begin to “move up the quality pyramid,” tackling complex clinical issues like fluid, diabetes, medication and infection management.

What is sometimes lost in the efforts to drive better outcomes for ESRD patients is the importance of remaining employed to those patients who are able. In fact, the definition of HRQOL, as contained in Health People 2020, is that “HRQOL is a multi-dimensional concept that includes domains related to physical, mental, emotional and social functioning…the following measures [are monitored as part of] HRQOL…participation measures reflect individuals’ assessments of the impact of their health on their social participation within their current environment. Participation includes education, employment, civic, social and leisure activities.”⁽²⁾

The story of the Medicare entitlement for dialysis is well known to nephrologists.^(3,4) A patient was dialyzed at a hearing of the House Ways and Means Committee in 1971, a bold action that helped spur passage of the Medicare entitlement. It should be pointed out that the patient was married, had children, was employed and would be returning to work as his health improved with dialysis. This was the hoped-for prototype of patients who would go on dialysis, but over the subsequent 40-plus years, with the dialysis patient population increasingly complex medically and on average over 60 years of age, the issue of rehabilitation and employment was put on a back burner. Recent evidence, however, clearly shows that this area needs bold action.

A few facts are worth highlighting:

• Nearly half of incident dialysis patients are under 60, and nearly a third of these were working just prior to starting dialysis.⁽⁵⁾
• Over 20% of unemployed patients report that they are able to work and would like to work.⁽⁶⁾
• On standardized instruments measuring patient-reported outcomes, unemployed ESRD patients score significantly lower in several key domains than those who are employed.⁽⁷⁾
• Working ESRD patients have a 20% lower incidence of depression than those who quit their jobs when starting dialysis.⁽⁸⁾

It seems clear from talking to patients and reviewing the literature that ESRD patients who are employed experience better physical and psychological health than those who are not employed. DaVita has developed targeted programs to help patients with advanced CKD and those on dialysis to maintain employment. These include the following:

• Kidney Smart^SM, a CKD education program led by trained educators and open to any CKD patient. The program focuses on maintaining health, understanding dialysis options and, when possible, maintaining employment. There is no DaVita® marketing in the program; it is designed to help patients understand their disease and make the right healthcare and personal choices for themselves and their families. Patients who have graduated from Kidney Smart are three times more likely to start a home dialysis modality, twice as likely to start hemodialysis with an arteriovenous fistula in place, and more likely to remain employed than those who have not been through the program.
• Resources for accommodating and advocating for working patients who choose to dialyze at DaVita facilities include insurance and employment counseling, flexible dialysis scheduling, wide availability of home dialysis (including peritoneal dialysis and home hemodialysis) and availability of extensive education resources. The latter include materials specifically developed to answer the questions of working patients and provide advice on how to stay employed and how that can enhance physical and psychological well-being.

It is imperative that nephrologists and dialysis providers work closely with patients as their advocates to help ensure that they can maintain employment, if possible, despite needing dialysis care. Engaging patients in this effort will enhance their experience of care, and will make the ESRD program one of rehabilitation and health rather than maintenance of chronic illness alone.

We could all take a lesson from the Dalai Lama as we strive to help our patients reach the top of the quality pyramid and remember that what is important to patients should be what is important to us:

“A good motivation is what is needed: compassion without dogmatism, without complicated philosophy; just understanding that others are human brothers and sisters and respecting their human rights and dignities. That we humans can help each other is one of our unique human capacities.”

If you’d like to hear more, join me, patients and caregivers from the kidney care community on Thursday, Dec. 12, at 5 p.m. PT / 8 p.m. ET for Stay Employed, Stay Healthy-Tips for Dialysis Patients—an important Google+ Hangout discussing the benefits of continuing to work while on dialysis.

References:

1. Nissenson AR. Improving Outcomes for ESRD Patients: Shifting the Quality Paradigm. Clin J Am Soc Nephrol. CJASN ePress. November 7, 2013. doi: 10.2215/CJN.05980613.
2. Health People 2020. Health-Related Quality of Life and Well-Being. www.healthypeople.gov/2020/about/qolwbabout.aspx. Accessed 11/24/13. Emphasis in the quote is mine.
3. Nissenson AR, Rettig RA. Medicare’s End-Stage Renal Disease Program: Current Status and Future Prospects. Health Aff 1999 Jan–Feb; 18(1):161–179.
4. Rettig RA. Special Treatment—The Story of Medicare’s ESRD Entitlement. N Engl J Med 2011; 364:596–598.
5. Kutner NG, Bowles T, Zhang R et al. Dialysis Facility Characteristics and Variation in Employment Rates: A National Study. Clin J Am Soc Nephrol 2008; 3(1):111–116.
6. C RB, Oberly ET, Sacksteder BS, Friedman A. Differences Between Employed and Nonemployed Dialysis Patients. Am J Kidney Dis 1996; 27(4):533–540.
7. Blake C, Codd MB, Cassidy A, O’Meara YM. Physical Function, Employment and Quality of Life in End-Stage Renal Disease. J Nephrol 2000; 13(2):142–149.
8. Kutner NG, Zhang R, Huang Y, Johansen KL. Depressed Mood, Usual Activity Level, and Continued Employment After Starting Dialysis. Clin J Am Soc Nephrol 2010; 5(11):2040–2045.