#518 Fatigue in all stages of chronic kidney disease: patients’ experiences and needs for support

Abstract

Abstract Background and Aims Fatigue is a commonly reported symptom in all stages of chronic kidney disease (CKD) and has a major impact on patients’ daily lives. Until now, predominantly qualitative research has contributed to our knowledge about CKD patients' experiences and perceptions of fatigue, and this knowledge is mostly constrained to the dialysis population. Therefore, the aim of this survey study was to explore in all stages of CKD: 1) patients’ experienced burden of fatigue, its impact on their daily lives, and presumed causes of their fatigue; 2) patients’ experiences and needs related to support, discussion and treatment of fatigue. Method In The Netherlands, a survey was constructed, consisting of twenty multiple-choice questions and six open-ended questions, to assess patients’ demographics; experiences, burden and impact of fatigue; presumed causes of fatigue; perceived social support; and experiences and needs regarding discussion and treatment of fatigue during routine nephrology care. This web-based survey was developed together with and distributed by the Dutch Kidney Patients Association, and all surveys were completed between 10 January 2023 and 23 July 2023. Descriptive statistics were used to summarize the results, also stratified by CKD population (CKD prior to kidney replacement therapy [KRT], dialysis, and kidney transplantation [KT]), sex (male and female), and age (18-50, 50-70, and ≥70 years). Results In total, 385 Dutch patients completed the survey. Participants had a mean (standard deviation) age of 58.2 (13.5) years and 42% was male. Overall, results were quite similar for all CKD populations: CKD prior to KRT (n = 130), dialysis (n = 39), and KT (n = 216). More specifically, fatigue was often experienced in the previous month (range percentages across the CKD populations: 92-100%) and present for longer than 6 months (77-92%). The most frequently reported presumed cause of fatigue was related to the reduced kidney function (41%), followed by treatment-related factors (25%; e.g. medication and dialysis). Patients in all CKD populations reported a high burden of fatigue (76-87%) that belonged in the top three of most burdensome symptoms (79-87%). Compared to elderly patients, younger patients reported more often fatigue in mental, social, and emotional domains; hereby limiting them more often in education/work, social activities, and relationships/family life. In all age groups, the majority of patients experienced barriers in tasks within the household (71-83%). In 32% of all patients, fatigue was never or rarely discussed with the treating physician, with the most important reasons being that patients assumed fatigue is part of their disease, and the lack of attention and efforts from the physician to discuss or treat fatigue. Of those patients who did discuss fatigue, 67% did not receive any advice or treatment from their physician. Of those who did receive advice or treatment (e.g. physical exercise), most patients (58%) believed it did not help to feel less tired. Finally, patients prior to KRT, women, and patients aged 18-50 years, reported more often receiving insufficient social support (42-65%;37-60%). Many of them desired acknowledgment of their debilitating symptom burdens, and more information about treatments and coping strategies for fatigue and its consequences. Conclusion In all stages of CKD, patients experience a high fatigue burden and insufficient support for their fatigue. To address this high symptom burden and patients’ unmet needs, it is important to: structurally measure (the burden of) fatigue in all CKD stages (e.g. using PROMs), strengthen social support for patients who experience fatigue, ensure that symptoms such as fatigue are discussed during consultations, and improve multidisciplinary symptom management with special attention for embedding psychosocial educational support to deal with (the consequences of) fatigue. Further research is needed to develop and implement such multidisciplinary symptom (communication and treatment) strategies into routine nephrology care.