Abstract

People living with a long-term condition, such as chronic kidney disease (CKD), often suffer from multiple symptoms simultaneously, making symptom management challenging. This study aimed to identify symptom clusters in adults with CKD across treatment groups and investigate their association with people's ability to perform their usual activities. We conducted a secondary analysis of both cross-sectional and longitudinal data collected as part of a national service improvement programme in 14 kidney centres in England, UK. This data included symptom severity (17 items, POS-S Renal) and the extent to which people had problems performing their usual activities (single item, EQ-5D-5L). We categorised data by treatment group: haemodialysis (n = 1,462), transplantation (n = 866), peritoneal dialysis (n = 127), or CKD without kidney replacement therapy (CKD non-KRT; n = 684). We used principal component analysis to identify symptom clusters per treatment group, and proportional odds models to assess the association between clusters and usual activities. Overall, clusters related to: lack of energy and mobility; gastrointestinal; skin; and mental health. Across groups, the 'lack of energy and mobility' clusters were associated with having problems with usual activities, with odds ratios (OR) ranging between 1.24 (95% confidence interval [CI], 1.21-1.57) for haemodialysis and 1.56 for peritoneal dialysis (95% CI, 1.28-1.90). This association was confirmed longitudinally in haemodialysis (n = 399) and transplant (n = 249) subgroups. Our findings suggest that healthcare professionals should consider routinely assessing symptoms in the 'lack of energy & mobility' cluster in all people with CKD, regardless of whether they volunteer this information; not addressing these symptoms is likely to be related to them having problems with performing usual activities. Future studies should explore why symptoms within clusters commonly co-occur and how they interrelate. This will inform the development of cluster-level symptom management interventions with enhanced potential to improve outcomes for people with CKD.

Highlights

  • Symptom burden is high in people with long-term conditions [1–4]

  • Our findings suggest that healthcare professionals should consider routinely assessing symptoms in the ‘lack of energy & mobility’ cluster in all people with chronic kidney disease (CKD), regardless of whether they volunteer this information; not addressing these symptoms is likely to be related to them having problems with performing usual activities

  • In the CKD non-kidney replacement therapies (KRTs) treatment group, we found that frequently co-occurring mental health symptoms, i.e. feeling anxious and feeling depressed, formed a stand-alone cluster, which differs from what Lee and Jeon reported in their smaller, Korean study [25]

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Summary

Introduction

Symptom burden is high in people with long-term conditions [1–4] This is true for people with chronic kidney disease (CKD) across disease stages and treatments [5, 6]. Those with CKD may suffer from 6 to 20 symptoms simultaneously [7], which negatively affects their quality of life and increases the risk of treatment non-adherence, health care utilization, and mortality [8–10]. Considering the number of concurrent symptoms, it is challenging for healthcare professionals and patients to assess each symptom separately and develop treatment plans . This may explain why CKD symptom management is often suboptimal [14–16]. This study aimed to identify symptom clusters in adults with CKD across treatment groups and investigate their association with people’s ability to perform their usual activities

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