Recent studies estimate that Chronic Kidney Disease (CKD) affects 10% of the world’s population. Classified by the World Health Organization (WHO) as a top 10 cause of mortality globally, CKD is projected to rise to the fifth by 2040. In Europe alone, 100 million individuals currently live with CKD, with another 300 million at risk, a number expected to climb with an aging population.
CKD is a progressive disease characterized by prolonged kidney abnormalities, leading to escalated health risks as kidney function deteriorates. One of its most common yet often overlooked disruptive condition is CKD-associated pruritus (CKD-aP), defined by potentially extreme itching that leads those suffering from it to scratch uncontrollably and damage their own skin. While its prevalence is hard to define, as CKD-aP is often underreported by patients and underdiagnosed by healthcare professionals, studies indicate that around 70% of the CKD population in hemodialysis is affected by this condition.
Understanding and addressing CKD-aP is critical as it is a disabling condition that negatively impacts both the physical and mental health of patients. Patients' experiences vary significantly, profoundly impacting their quality of life. The main symptom of CKD-aP is primarily itching; but CKD-aP is more than just an itch. Associated symptoms can affect the patient's ability to sleep, concentrate, and perform daily activities, significantly affecting their quality of life.
Many patients suffer in silence and underreport CKD-aP, often feeling embarrassed by the wrongly perceived connection to their personal hygiene and resigned to their condition, as they do not receive any relief. Embracing patient-centered care is essential in enhancing the lives of CKD-aP patients. Increasing disease awareness, active knowledge, recognition and understanding can lead to an appropriate management of CKD-aP patients. To better increase transparency and understand patient outcomes related to CKD-aP, it is crucial to introduce Patient-Reported Outcome Measures (PROMs) in routine dialysis check-ups for accurately assessing treatment impact on health-related quality of life and patient outcomes.
To further improve the management and understanding of CKD-aP, collecting additional research, clear data and patients’ insights are essential. This effort will better support those patients affected by this underreported and underestimated health condition, leading to more personalized and effective care strategies that tailor the unique needs and experiences of CKD-aP patients.
By prioritizing patients' needs, it is essential to address the lack of international targeted treatment guidelines and widespread adoption of therapies for CKD-aP, which currently leads to an inconsistent approach to its management . Patients who feel acknowledged and understood are more likely to engage proactively in managing their condition, leading to better health outcomes and reduced symptom intensity, which further enhances patients’ physical and mental well-being.
Improving quality of life for people living with CKD-aP requires a coordinated effort to enhance awareness, and ultimately address patients’ unmet needs. This is crucial for timely diagnosis and effective management of this chronic condition.
We must unite our efforts by fostering a deeper understanding and addressing this often-overlooked condition to significantly improve the lives of those suffering from CKD-aP. Establishing a supportive ecosystem that truly listens to and prioritizes patient experiences is vital for closing the gap for CKD-aP patients and improve their quality of life.
Through collaborative partnerships, we can better understand and address Chronic Kidney Disease-associated Pruritus, writes Daniel Gallego Zurro, EKPF President
Addressing CKD-aP is a critical need that demands urgent collaboration across stakeholders. Despite its significant prevalence and overall impact on patients’ daily lives and their quality of life, there is a clear unmet medical need and lack of awareness on effective management strategies for CKD-aP patients. The European Kidney Patients' Federation (EKPF) is at the forefront of addressing this issue, advocating for the 85 million individuals across Europe living with kidney-related health conditions.
EKPF recently coordinated a series of national surveys that underscore the profound impact of CKD-aP on patients’ daily lives. Surveys were conducted across several European countries to assess the prevalence, symptoms, treatment, and impact of CKD-aP on patients' quality of life. Findings are clear: over two-thirds of CKD-aP patients suffer from constant itching, with those experiencing moderate or severe cases facing disruptions in their sleep, irritability, stress, and concentration challenges. Alarmingly, only a third of these patients seek treatment or talk to their healthcare professionals about their condition, highlighting a critical need for more awareness and support amongst patients and caregivers. The survey results show the impact of itching on CKD-aP patients’ daily lives, impacting their quality of life, self-esteem, social relations and mental health.
By delving into patients experience and perspective through dedicated surveys, we could unveil the need to better address and management of CKD-aP patients’ unmet needs and improve their overall well-being and quality of life.
Survey findings have underlined the need to take action, prompting six key recommendations to create a better care system for CKD-aP patients. The recommendations include raising awareness, educating healthcare professionals about CKD-aP's impact and treatments, and pushing for support from EU and national policymakers. Additionally, there is a call to boost research into the causes of CKD-aP, collect more patient data to shape and implement care strategies to improve channels to report effectively itching and pruritus complications.
In today's evolving healthcare landscape, unified efforts are crucial to meet the needs of CKD-aP patients. Seizing the momentum of changing policies and the new European mandate presents a unique opportunity to effect lasting change for patients. Raising awareness among stakeholders – healthcare professionals, caregivers, policymakers, regulators and the civil society - about CKD-aP’s impact and treatment options is paramount. Access to comprehensive data is crucial for developing effective interventions and therapies that can alleviate symptoms and improve patients’ quality of life.
Together, through collaborative partnerships and a strong commitment to comprehensive and patient-centered care, we can improve outcomes for CKD-aP patients across Europe. Now is the time to act decisively, ensuring that every person living with CKD-aP receive the recognition, support, and effective solutions they deserve.
[3] Burton, J., Walpen, S., Danel, S., Snowdon, L. and Schroeppel, B. Insights into current practices, attitudes and unmet medical needs relating to the diagnosis and treatment of chronic kidney disease-associated pruritus: results from an international nephrologist survey., Nephrology Dialysis Transplantation, 36. 2021. Availabe at: https://academic.oup.com/ndt/article/36/Supplement_1/gfab098.0018/6289269