CKD impacts multiple dimensions of patients and care partners’ lives, including HRQOL, work productivity, and care received/provided.
Among the many disabling complications associated with CKD, evidence shows that anemia can further add to the disease burden for patients and their care partners. “In addition to the burden of CKD itself, anemia may cause or worsen fatigue, weakness, low exercise tolerance, difficulty concentrating, and dizziness,” explains Marjolaine Gauthier-Loiselle, PhD. “Together, these symptoms can significantly interfere with patients’ daily activities and HRQOL. Care partners of patients with CKD may also experience a substantial burden in terms of HRQOL and work productivity impairment, which may also exacerbate when anemia is present.”
Assessing CKD & Anemia Burden in Patients & Care Partners
According to Dr. Gauthier-Loiselle, studies assessing the burden of CKD and anemia have primarily focused on the burden experienced by patients rather than care partners. “Such studies are important to raise awareness about the consequences of CKD beyond the burden to the healthcare system,” she says. “This highlights the need for both patient and care partner support in the management of CKD.”
For a study published in Kidney Medicine, Dr. Gauthier-Loiselle and colleagues assessed the burden experienced by patients with CKD with and without anemia and their care partners in terms of HRQOL, work productivity, and the care received or provided. An online survey was administered to adults with CKD and their care partners who were recruited through the American Association of Kidney Patients and a third-party online panel. Among 410 patients who completed the survey, 190 had anemia. In addition, 258 care partners completed the survey, 110 of whom cared for patients with anemia.
High Burden of CKD With Anemia Seen for Patients & Care Partners
Findings from the survey demonstrated that the burden experienced by patients with CKD and their care partners was high, especially when anemia was present in patients. Patients with CKD and anemia had lower average HRQOL scores on the Functional Assessment of Cancer Therapy-Anemia assessment (Figure).
“Our results highlight that CKD impacts multiple dimensions of patients and care partners’ lives, including HRQOL, work productivity, and care received/provided,” says Dr. Gauthier-Loiselle. “Approximately two-thirds of care partners reported a severe or very severe degree of subjective burden. That proportion was even higher among care partners of patients with anemia. Additionally, care partners reported providing a substantial number of hours of care per week and experienced a high level of work productivity impairment. This can increase financial stress for care partners and could lead to considerable indirect costs to society.”
Patient & Care Partner Perspectives Can Inform Treatment Decisions
“Altogether, our findings highlight the importance of capturing the care partner’s perspective to improve our understanding of the burden associated with CKD and anemia in CKD,” says Dr. Gauthier-Loiselle. “Physicians should acknowledge patient and care partner perspectives and make shared treatment decisions to accommodate certain situations. For example, patients or care partners may prefer a treatment that can be taken at home rather than in the clinic. In-clinic treatment can be time consuming or may disrupt daily activities for patients and care partners. At-home treatment may help reduce the burden on HRQOL and work productivity in these individuals.”
Strategies are needed to improve HRQOL for care partners, which could lead to better care for patients with CKD. “Physicians can guide patients and care partners to support from local community groups or information from trustworthy websites,” Dr. Gauthier-Loiselle says. In addition, novel treatments for anemia in CKD are currently being evaluated and could help further alleviate the disease burden. “Further studies are needed to better understand the extent of the burden associated with CKD and to explore supportive strategies for patients and care partners,” adds Dr. Gauthier-Loiselle.