Patient and Care Partner Burden in CKD Patients With and Without Anemia: A US-Based Survey

Abstract

Rationale & objective: Chronic kidney disease (CKD) has a far-reaching impact on both patients and care partners, which can be further compounded by frequent complications such as anemia. This study assessed the burden experienced by patients with CKD and the care partners of patients with CKD, with and without anemia.

Study design: Online survey.

Setting & participants: Adult patients with CKD and the care partners of adult patients with CKD living in the United States were recruited through the American Association of Kidney Patients and a third-party online panel (January 9, 2020-March 12, 2020).

Outcomes: Patient and care partner characteristics, care received or provided; health-related quality of life, and work productivity.

Analytical approach: Descriptive statistics were reported separately based on the presence or absence of anemia.

Results: In total, 410 patients (anemia: n=190, no anemia: n=220) and 258 care partners (anemia: n=110, no anemia: n=148) completed the survey. Most patients reported receiving paid or unpaid care because of their health condition (anemia: 58.9%, no anemia: 50.9%), with an overall average of 14.2 and 11.3 h/wk among the anemia and no anemia patients, respectively. The care partners also reported providing numerous hours of care (anemia: 33.6 h/wk, no anemia: 38.0 h/wk), especially care partners living with their care recipient (anemia: 52.6 h/wk, no anemia: 42.8 h/wk). Among the patients, those with anemia reported a numerically lower average health-related quality of life (Functional Assessment of Cancer Therapy-Anemia score, anemia: 110.1; no anemia: 121.6). Most care partners reported a severe or very severe burden (Burden Scale for Family Caregivers-Short Version score≥15, anemia: 69.1%; no anemia: 58.8%). The work productivity impairment was substantial among employed patients (anemia: 44.9%, no anemia: 35.4%) and employed care partners (anemia: 47.9%, no anemia: 40.7%).

Limitations: The survey results may have been subject to selection and recall biases; moreover, the observational nature of the study does not allow for causal inferences.

Conclusions: Patients with CKD and the care partners of patients with CKD experience a considerable burden, especially when anemia is present.

Keywords: Anemia; burden; care partners; chronic kidney studies; quality of life; survey; work productivity.

Figure 1

(A) Patients’ and (B) care partners’ preferences for the route and frequency of administration of anemia treatment. The preferred frequency of administration was asked only to the subset of patients and care partners who indicated that a particular route of administration was preferred. The patients’ preference for the route and frequency of administration was assessed among patients who were currently receiving an anemia treatment. The care partners’ preference was assessed among all the care partners. An intravenous injection at a dialysis facility was administered only to patients who indicated receiving dialysis (n=80) and care partners who indicated providing care to a care recipient receiving dialysis (n=68).

Figure 2

Total Functional Assessment of Cancer Therapy-Anemia and subscale scores. The Functional Assessment of Cancer Therapy-Anemia scores were derived through the addition of the anemia subscale score and the Functional Assessment of Cancer Therapy-General score. The total Functional Assessment of Cancer Therapy-General scores were derived through the addition of scores for the physical well-being, social or family well-being, emotional well-being, and functional well-being domains. For physical well-being, social or family well-being, and functional well-being, the scores ranged from 0 to 28. For emotional well-being, the scores ranged from 0 to 24. For the anemia subscale, the scores ranged from 0 to 80. For the Functional Assessment of Cancer Therapy-General subscale, the scores ranged from 0 to 108. The total Functional Assessment of Cancer Therapy-Anemia scores ranged from 0 to 188. For all the scales, a higher score indicated better health-related quality of life. Abbreviations: FACT-An, Functional Assessment of Cancer Therapy-Anemia; FACT-G, Functional Assessment of Cancer Therapy-General.

Figure 3

Burden of caregiving, measured using the Burden Scale for Family Caregivers–Short Version, among (A) all care partners and (B) care partners living with the care recipient. The Burden Scale for Family Caregivers-Short Version score ranged from 0 to 30, with higher scores indicating a greater care partner burden. Scores ranging from 0 to 4 indicate a degree of subjective burden ranging from none to low, with no increased risk of physical psychosomatic complaints. Scores ranging from 5 to 14 indicate a moderate degree of subjective burden, with an increased risk of physical psychosomatic complaints. Scores ranging from 15 to 30 indicate a severe-to-very-severe degree of subjective burden and a very much increased risk of physical psychosomatic complaints.

Figure 4

(A) Patient work productivity, assessed using the Work Productivity and Activity Impairment (WPAI)-Specific Health Problem, was evaluated based on the last 7 days at the time of data collection. The WPAI-Specific Health Problem outcomes are expressed as impairment percentages, with higher numbers indicating greater impairment and less productivity. Activity impairment refers to the impact of health problems on the ability to complete daily activities and was measured among all the patients (n=410). Overall work impairment, presenteeism, and absenteeism refer to the impact of health problems on the ability to work and were measured among employed patients (n=133, anemia cohort: n=55, no-anemia cohort: n=78). (B) Care partner work productivity, assessed using the WPAI-Caregiver, was evaluated based on the last 7 days at the time of data collection. The WPAI-Caregiver outcomes are expressed as impairment percentages, with higher numbers indicating greater impairment and less productivity. Activity impairment refers to the impact of caregiving on the ability to complete daily activities and was measured among all the care partners (n=258). Overall work impairment, presenteeism, and absenteeism refer to the impact of caregiving on the ability to work and were measured among employed care partners (n=141, anemia cohort: n=67, no-anemia cohort: n=74).

Figure 5

Job-related decisions among (A) patients and (B) care partners. More than 1 option could be selected (not mutually exclusive).