The European Kidney Patient Federation (EKPF) launched this white paper during its General Assembly on December 20th in Cyprus. Titled “Improving Chronic Kidney Disease-associated Pruritus (CKD-aP) Patients’ Quality of Life,” this comprehensive document is the result of extensive research and collaboration.

The white paper is based on the findings of patient group surveys conducted in several European countries, including Portugal, France, Italy, Spain, Germany, and the United Kingdom. These surveys aimed to collect data and insights from individuals suffering from CKD-aP, shedding light on their experiences and challenges.

One crucial aspect of this initiative was the establishment of a patient group steering group. Comprising a representative from each participating patient organization, this group `played a pivotal role in supporting the project. Their responsibilities included acting as a bridge to the national context and guiding the development of the final report, which will incorporate recommendations drawn from the national surveys.

The survey analysis revealed several clear trends and themes that merit attention:

  1. Prevalence of Pruritus: More than two-thirds of the respondents reported suffering from pruritus, often enduring these symptoms for extended periods, exceeding six hours at a time.
  2. Dialysis Correlation: Pruritus frequently begins in conjunction with dialysis, indicating a significant association between the two.
  3. Affected Areas: Patients commonly experience itching on their legs, backs, and arms.
  4. Impact on Health and Quality of Life: Pruritus has severe physical and mental health implications, resulting in a decreased quality of life, disrupted sleep, and negative effects on mood and social activities.
  5. Treatment and Communication: Only one-third of respondents reported following treatment for pruritus. Interestingly, many of them expressed skepticism regarding the success of treatments, with over a third discontinuing discussions about pruritus with healthcare professionals. Some respondents emphasized the need for more information from healthcare providers and desired a more active role in their care decision-making process.

The release of this white paper by EKPF signifies a crucial step towards addressing the challenges faced by CKD-aP patients and formulating evidence-based policy recommendations to improve their quality of life:

This report has been created in collaboration with Evoke Incisve Health and with the support of CSL Vifor.

You can read the full report here