A poster presented at the American Society of Nephrology's (ASN) Kidney Week 2019 sought to understand more about patient knowledge of anemia and its impact on patient quality of life, their understanding of the disease, as well as how their anemia is managed.
Of the 30 million patients in the United States with chronic kidney disease (CKD), about 5 million have anemia. A poster presented at the American Society of Nephrology's (ASN) Kidney Week 2019 sought to understand more about patient knowledge of anemia and its impact on patient quality of life, their understanding of the disease, as well as how their anemia is managed.
A quantitative online survey was administered to 500 patients in the United States aged 18 and older between August and September 2018 with self-reported CKD, with or without anemia. They were recruited via online communities and support groups, patient associations, and patient referrals. Data were aggregated and anonymized to protect confidentiality.
Respondents were 69% female, with a mean age of 52.2 years; the majority (68%) said they had moderate to severe CKD (stages 3—5); 24% had CKD stage 1 or 2; the remainder did not know their stage.
Of the entire cohort (n = 255), 57% reported being told they had anemia by a healthcare professional. Of the total, 66% ( n= 168) knew about the relationship between anemia and CKD. Of the entire group, 38% (n = 170) knew their hemoglobin levels; most were aware of the key symptoms linked with anemia, such as fatigue or weakness.
As for reported symptoms, patients with anemia reported lack of energy (82%), feeling sad and/or depressed (53%), noting pain (52%), difficulty sleeping (53%), and worrying about worsening anemia (63%).
Most patients (67%) stated that their anemia was well-managed with iron supplements (55%) or erythropoiesis-stimulating agents (30%); 11% had received transfusions. Less than half felt confident that they knew the adverse effects of their treatment.
Half of the patients reported they knew about different treatment options for anemia, and they most frequently used online sources, including social media, to learn about anemia. However, patients most trusted information that came from their provider, they reported.
The patients perceived that anemia had a negative impact on their physical symptoms and emotional wellbeing, and their knowledge and understanding of CKD anemia and its management varied, the researchers reported. The researchers, funded by AstraZeneca, said the findings demonstrate the challenges providers and patients have concerning the need for further education on the association between CKD and anemia, symptoms associated with anemia, and the available treatment options for anemia.
Palaka E, Guzman NJ, Dunn A, Wittbrodt ET, Grandy S, Finkelstein FO. Understanding patient perspectives of the impact, awareness, and treatment of CKD anemia: A US patient survey. Presented at: American Society of Nephrology Kidney Week 2019, Washington, DC; November 5-10, 2019. Poster 232.