Quality of life varies by country for patients on dialysis; US sees lowest employment rate
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An analysis of Dialysis Outcomes and Practice Patterns Study data revealed global variations in how patients perceive their quality of life, with functional status playing an important role.
In addition, patients receiving dialysis in the United States had the lowest rate of employment. According to investigators, results suggest employment status may be linked to reported physical and mental health.
“The effects that dialysis treatment can have on lifestyle, burden of disease, and quality of life (QoL) are important to patients receiving kidney replacement therapy and for their care partners,” Edwina A. Brown, DM, of Imperial College Renal and Transplant Centre at Hammersmith Hospital in London, and colleagues wrote. “Moreover, when facing the need for kidney replacement therapy, patients and their care partners, irrespective of the chosen dialysis modality, have important questions regarding their expected quality of life, the burden dialysis will place on them or their loved ones, whether these factors will change over time and what factors impact quality of life on dialysis.
“Another important consideration,” the researchers wrote, “is maintaining vocational abilities, with employment identified as an important outcome in the hemodialysis (HD) arm of the Standardizing Outcomes in the Nephrology Study (SONG) study. A core outcome of the peritoneal dialysis (PD) arm of SONG was maintenance of life participation activities.”
To examine the relationship between QoL and patient experiences (and how these may vary by region), researchers included 7,771 patients from six countries who participated in the Dialysis Outcomes and Practice Patterns Study (PD or hemodialysis).
Functional status and quality of life
Overall, lower functional status score (pointing to challenges performing basic tasks of daily living) was associated with lower physical component summery (PCS) and mental component summary (MCS) scores, a greater burden of kidney disease and a greater likelihood of experiencing depressive symptoms.
“Patient-reported outcomes were poor for patients with lower functional status,” the researchers wrote. “Thus, persons who need help with their daily activities will likely have lower physical and psychosocial functioning, experience a higher burden of kidney disease and have a higher risk of developing depression on dialysis.”
Impact of physical, mental health on employment
Centering on Japan, researchers observed that most of its patients had the highest possible score on the functional status scale (61% on hemodialysis and 67% on PD compared with about 33% of patients in other countries), the highest PCS score and the highest rates of employment (55% of patients on hemodialysis and 68% on PD).
However, the contrasting observation that patients in the United States had the highest MCS scores and lowest employment rates (22% of patients on hemodialysis and 42% on PD) led researchers to suggest employment status could be related to physical and mental health; because Japanese patients have the highest PCS scores, the researchers contended they are likely “more physically able to maintain vocational abilities.”
According to the researchers, employment and higher PCS scores could serve as proxies for better health status overall, as both have also shown associations with lower risks for hospitalization and mortality.
“However, it was somewhat surprising to learn that despite the higher employment and physical functioning in Japan, adjusted MCS scores were lower and kidney disease burden was higher,” the researchers wrote. “In contrast, in the U.S., which had the lowest proportion of patients employed, adjusted MCS scores were highest, along with lowest kidney disease burden and lowest odds of having depression symptoms. Taken together these findings may indicate that mental health and well-being may be compromised at the expense of struggles to maintain employment which may in part be driven by unique social and cultural factors operating within Japan.”
Researchers noted that, compared with the other countries, a physician diagnosis of depression was lowest in Japan (2% of patients on PD and 3% of patients on hemodialysis). This finding comes despite Japanese patients screening positive for depression at similar rates to patients in the United Kingdom; researchers recommend efforts be put toward improving depression diagnosis and treatment strategies.
“This information should be shared with patients and families when making dialysis modality choices, and in considering additional supportive care approaches for these patients,” Brown and colleagues concluded. “The present study also serves as a call to action to the nephology and kidney community to develop evidence-based strategies to identify and effectively treat depression, address symptoms, enhance treatment team-patient communication and develop novel therapeutic strategies in an effort to improve the patient experience on kidney replacement therapy.”
Perspective
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In this study, researchers compared demographic and clinical data across countries at baseline and looked at KDQOL-SF physical and mental functioning and burden of illness.
Functional status, depression and employment for patients up to age 65 years were also reviewed.
Key findings included the following:
- patients doing fewer activities of daily living had worse physical (PCS) and mental functioning (MCS) scores, higher burden of illness and higher rates of depression;
- patients on peritoneal dialysis and hemodialysis (HD) had similar mental functioning and depression scores;
- HD patients scored worse on burden of illness than PD patients;
- HD and PD patients with the highest PCS score were the most likely to be working;
- the United States had the best MCS and burden scores, but the worst employment (20% of HD patients were employed, 42% of PD patients were employed); and
- the depression screener identified depression more often (37%) than physicians (12%).
Depression
Depression and poor health-related quality of life (HRQoL) increase dialysis patients’ risk of death and hospitalization. CMS’s Quality Incentive Program, mandatory for all dialysis facilities, has a reporting measure to identify patients screened for depression and what the plan is to address depression if identified.
Based on death and hospitalization risk, should depression be a clinical measure, not a reporting measure? CMS requires dialysis facilities to have master’s prepared social workers on staff. With appropriate time and staffing, they could use cognitive behavioral therapy, which has been found to be effective in reducing depression and improving HRQoL. This simple change could reduce hospitalizations and save lives.
Likewise, low PCS and MCS scores increase dialysis patients’ hospitalization and death risks. Deconditioning can be improved with exercise. Nephrologists can make a difference by encouraging physical activity.
Employment
In 1972, Sen. Vance Hartke, D-Ind., said, when testifying in support of Medicare coverage for treating end-stage kidney disease, that he believed most patients saved by dialysis and transplantation would continue or return to work.
Aging and comorbidities have taken a toll on employment outcomes, and unemployment is associated with worse KDQoL-36 scores, lower transplant rates and higher hospitalization and death rates.
CMS charges ESRD Networks with the responsibility of encouraging patient rehabilitation and participation in vocational rehabilitation (VR), but efforts vary. The ESRD Network of Florida worked with facilities that had no patients aged 18 to 54 years receiving VR services, were working or in school. Network 16 developed a VR toolkit. These successful efforts prove we do not have to accept poor employment outcomes and associated risks to patients. We can and should do better.
References:
CMS ESRD Network Organizations. www.cms.gov/Medicare/end-stage-renal-disease/ESRDNetworkOrganizations
Comagine Health – ESRD Alliance Network 16. Vocational rehabilitation for patients. https://nwrn.org/patients-a-family/ptedres/vocational-rehabilitation-pt.html.
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