Burden of itching in patients with moderate to advanced kidney disease: A mixed-methods study

Introduction: Chronic Kidney Disease- associated pruritis (CKD-ap), often referred to as itch/itching, has been estimated to impact approximately 40% of adult patients. Despite recognition of symptom burden, CKD-ap is often under-recognised. The aim of this study was to increase knowledge on the burden, experience and impact of CKD-ap and to identify patient priorities for management. Methods: This study involved both one-to-one interviews and a survey of adult patients with CKD stages 3a-5 receiving any modality of care. The illness perceptions framework guided interview questions. Thematic analysis was used to summarise findings. The survey included the Kidney Disease Quality of Life (QoL) Instrument, Generalised Anxiety Disorder-2 and Patient Health Questionnaire-2 (to measure mood), demographic questions, details on kidney disease, and about pruritus. Both the interview questions and the survey were co-developed with patient involvement, and patients recruited across partnering NHS sites as well as through community networks. Results: Nine patients (5 male and 4 female – M age = 58.78) participated in interviews, who identified with a range of ethnic groups: 3 minority ethnic and 6 white heritage. Results identified themes associated with the 5 elements of illness perceptions: identity, cause, consequences, timeline and controllability. Patients described the variable nature of their itch, impact on sleep and social functioning, previous trial-and-error with treatments and what they would be willing to try in future. The survey respondents (n=135) included a mix of stages of CKD and treatment forms with 68% indicating that they have experienced a persistent itch. These individuals showed significantly poorer QoL, in particular the effects of kidney disease on daily life (t(131) = -4.05, p <.001). Participants overwhelming described their itch as “irritating” and described how it occurred in several places on their bodies. The biggest impact of itch was on participants sleep, however effects on mood, social life, intimacy, work and fatigue were also indicated. The degree to which the itch was bothersome, and the severity of the itch were shown to be associated with quality of life and mood, as were the effects of itching on sleep, leisure and housework, with poorer wellbeing associated with a higher burden. Discussion: The results of this study add to previous research highlighting the burden of CKD-ap. Its impact on everyday life is far ranging, extending to domains such as sleep, social functioning, and overall quality of life. The results of the survey especially highlighted the negative impact that itch can have on emotional/mental health. Collectively, the findings indicated that the burden of CKD-ap was not consistent, it changed as treatment regimens changed, with variable support along the way. There was consensus that patients had engaged in a range of trial-and-error methods to elevate symptom experience. Addressing future symptom burden was a key priority, though most were not favourable about long-term medications specifically as they were already contending with high pill burden. Overall, the research identifies an unmet need in exploring CKD-ap as part of routine care, as well as progressing advice and support to patients about its management.