Symptom experience in non‐dialysis‐dependent chronic kidney disease: A qualitative descriptive study

Abstract

SUMMARY Background Studies indicate that symptoms attributable to impaired kidney function are important determinants of quality of life and functional status in patients with chronic kidney disease (CKD). Accordingly, symptom assessment and subsequent control are prerequisites of high‐quality care in this patient population. Whilst symptom burden in patients with advanced CKD managed without dialysis has been likened to that of palliative care cancer populations, there is little information about the nature and range of symptoms in earlier stages of the CKD trajectory. This paper reports the findings of the preliminary phase of a study aimed at exploring the symptom experience in patients with CKD stages 4 and 5. Methods Eighteen semi‐structured patient interviews were conducted, using an interview schedule developed specifically to guide discussion. Data were analysed using thematic analysis to identify symptom categories and thematic patterns across the patient experiences. Results Patients reported a wide range of symptoms, with over 50 different categories and sub‐categories emerging from the interview data. Symptom categories could be broadly classified into physical symptoms, such as ‘Altered taste perception’, ‘Sleep disturbance’ and ‘Fatigue’, and psychological symptoms, such as ‘Forgetfulness’, ‘Poor concentration’ and ‘A sensation of gradually slowing down’. Of note, when questioned further, patients indicated that they would not usually report their symptoms to clinicians. Conclusions This study suggests that patients with CKD stages 4 and 5 may have a high symptom burden. The finding that patients did not routinely report their symptoms emphasises a need for clinicians to incorporate symptom assessment into routine clinical consultations.

Validation of the IPOS-Renal Symptom Survey in Advanced Kidney Disease: A Cross-sectional Study

“…Patients' reluctance to mention their problems and clinician ignorance about symptoms remain important barriers to improving their management in hemodialysis patients. 1,10 Patient-reported symptom surveys such as the IPOS-renal are a potential solution to bridge this gap. The IPOS-renal survey has features that recommend its use over other similar surveys.…”

Kidney symptom questionnaire: Development, content validation and relationship with quality of life

“…Furthermore, qualitative research has indicated that patients feel that identifying symptoms and responding appropriately is central to successfully managing their condition (Costantini et al 2008). However, a recent qualitative study (Pugh-Clarke et al 2017) showed that only 15 out of 18 patients not undergoing renal replacement therapy (RRT) disclosed their symptoms to healthcare professionals, highlighting a need for improved attention to and communication about symptom experience. Validated and population-appropriate symptom assessment tools are required to assist patient assessment for holistic service provision, and for research.…”

“…Patients with chronic kidney disease (CKD) typically experience a range of symptoms, including fatigue, weakness, musculoskeletal pain, sleep problems, low libido and skin discomfort (Brown et al 2017;Gutierrez Sanchez et al 2017;Pugh-Clarke et al 2017;Senanayake et al 2017;van der Veer et al 2017). Symptom burden is an important predictor of quality of life (QoL) (Almutary et al 2013;Almutary et al 2017), which can be reduced even in earlier stages of CKD (Cruz et al 2011).…”

“…With CKD rising in prevalence, effective assessment and management of symptoms is vital (Eckardt et al 2013). However, symptom experience is not directly related to clinical parameters such as renal function (Murphy et al 2009;Brown et al 2017) and is often overlooked by clinicians or under-reported by patients (Weisbord et al 2007;Pugh-Clarke et al 2017).…”

Single‐case Experimental Designs: A Clinical Research Opportunity in Renal Care

“…One symptom commonly experienced by persons with CKD stages 4 and 5 is impaired sleep, which manifests as difficulties falling asleep, daytime fatigue, intermittent sleeping patterns, sleeping all of the time, early morning awakening and feeling unrested upon wakening (Pugh‐Clarke et al ). In all stages of CKD, the prevalence of sleeping problems ranges between 36‐ 82%, and every second patient receiving haemodialysis or peritoneal dialysis has difficulty sleeping (Almutary et al ).…”