By Diana Clynes, Executive Director, American Association of Kidney Patients
As the oldest and largest fully independent kidney patient organization in the U.S., the American Association of Kidney Patients recognizes that it’s not enough to solely focus on raising awareness of the causes of chronic kidney disease (CKD) and treatment options for patients. As an ambassador for patients, I spend countless hours discussing impacts of CKD and I often find it necessary to explain how far this disease extends beyond the kidneys alone. It’s impossible to fully appreciate the struggles CKD patients face without recognizing the impact that coexisting cardiovascular disease (CVD), diabetes, and related conditions can have on patients’ daily lives and future aspirations.
To add additional complexities, certain complications commonly affecting CKD patients can increase these risks. Of these, anemia – a lack of oxygen-carrying red blood cells – can increase already heightened risks for heart disease, stroke, hospitalization, and death in individuals with kidney diseases. There is reason to believe that anemia doesn’t always receive the attention it warrants and yet it can have a significant impact on an individual’s health and quality of life.
The scope of CKD anemia
Of the approximately 30 million patients with CKD in the U.S., nearly 5 million have anemia. Anemia is common in individuals with CKD – and is often undertreated. This gap in anemia diagnosis and management may represent a missed opportunity for reducing the long-term risks anemia poses. At AAKP, we commonly hear the substantial impacts untreated anemia has on CKD patients which can severly impact quality of life.
Exploring what patients know, and need, regarding anemia
Despite the potential impacts of CKD anemia, we find that patients do not always realize the full extent to which anemia can or already does affect their health. To further explore this issue, AstraZeneca sponsored a survey of 500 patients in the U.S. with self-reported CKD to understand their knowledge and attitudes around anemia. Results of the survey show that while these patients were aware of the more common symptoms of CKD anemia, most were unaware of potentially more serious consequences or just how much this condition can impact their daily life.
Additionally, the survey found that most patients do not know their hemoglobin levels, a key indicator of anemia. This finding is consistent with what we at AAKP experience when supporting our patient members. However, as this survey supports, we also find that patients want more information and support when it comes to anemia (survey results show that of the patients surveyed who self-reported that they had CKD anemia, 45% want more information and support).
The results of this survey emphasize the importance of open doctor-patient discussions and education about anemia throughout the patient’s CKD journey.
As doctors and patients work together to preserve as much kidney function as possible, while managing the complexities of coexisting conditions such as CVD and diabetes, anemia may compete for their attention. But that’s precisely when open discussion can empower us all to address the day-to-day effects of anemia, with an educated eye toward limiting the potential long-term harm it can inflict on patients’ health and quality of life. For more information on AAKP’s programs, educational materials, or to receive a copy of AAKP’s Understanding Anemia of Chronic Kidney Disease please visit www.aakp.org or contact us at (800) 749-2257.
About The American Association of Kidney Patients
The American Association of Kidney Patients is the oldest and largest independent kidney patient organization in the U.S. Celebrating its 50th Anniversary in 2019, AAKP has been dedicated to improving the quality of life and long-term outcomes for kidney patients through education, advocacy, and by defining patient engagement. They fight for early disease detection; increased kidney transplantation and pre-emptive transplantation; full patient care choice including either at-home or in-center dialysis; protection of the patient/physician relationship; and the elimination of barriers to innovation and patient access to all available treatment options. To execute AAKP’s national strategy, the Association has developed the Center for Patient Engagement and Advocacy and the Center for Patient Research and Education which houses all of AAKP’s educational programs, research initiatives, and advocacy efforts. For more information on the AAKP please visit www.aakp.org.
The survey was commissioned by AstraZeneca and developed by Portland Research and Insights. The American Association of Kidney Patients was not associated with the creation of the survey.
The survey was conducted online among 500 U.S. patients who self-reported that they had been diagnosed with CKD (of any stage). Of these 500 patients, 294 (59%) self-reported that they had been diagnosed with CKD anemia.