Abstract

Abstract Background and Aims Chronic kidney disease (CKD) and its related symptoms significantly impact patients’ health-related quality of life (HRQoL). CKD-associated pruritus (CDK-aP) often affects patients with advanced CKD, particularly those on renal replacement therapy, and remains mostly underrecognized by both patients and medical providers. To explore the current patients’ impairment of HRQoL due to CKD-aP, we conducted a quantitative survey amongst members of a CKD patient association in Germany. Methods Our questionnaire was distributed via the channels of the German National Kidney Patients Association (Bundesverband Niere e.V.) from mid-June to mid-September 2022. Responses of 569 CKD-patients of a total of roughly 16,000 members were analysed regarding their general health, HRQoL, and general treatment satisfaction using multiple choice questions. Pruritus burden was assessed with a 0-10 numeric rating scale. Results The demographic details are displayed in Figure 1. Among the surveyed CKD patients, 33% were transplanted, 39% on hemodialysis, and 7% on peritoneal dialysis. We could confirm that most CKD patients (92 %) suffered from comorbidities. Initially, 12% reported dermatological comorbidities but when asked specifically about pruritus, 62% reported this symptom which was also associated with worse HRQoL (Figure 2). However, only one third was receiving antipruritic treatment by a physician. Furthermore, patients who were able to fully or at least partially participate in their medical decisions showed higher satisfaction and higher HRQoL (86% vs. 65% vs. 43% satisfaction, depending on full/partial/no participation, respectively) yet the patients did not always perceive that shared-decision-making was possible. Patients also showed high interest in topics outside of their primary CKD treatment, such as overall symptom control and additional psychological measures. They reported higher HRQoL when these areas were addressed by the medical team (87% vs. 55% satisfaction). Conclusions Our survey results emphasize the persisting need for shared or co-creative exchange between patient and physician. Improving patient education and the caregiver's awareness of the burden of pruritus – one of the many CKD-related symptoms – could be a first step towards higher patient satisfaction and HRQoL and higher treatment rates. CKD-aP appears underreported by patients via unprovoked questioning and should be screened frequently.

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