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A systematic review of symptoms experienced by children and young people with kidney failure
Zoe Jacob1, Lucy Plumb2,3, Louise Oni4,5
1Dept. of Medical Paediatrics, Royal Aberdeen Children's Hospital, NHS Grampian, Aberdeen, UK. zoe.jacob@nhs.scot.
Insights
Children and young people with kidney failure experience a high symptom burden, particularly sleep and mental health issues. More research is needed to understand and manage these symptoms effectively in end-of-life care.
Area of Science:
- Pediatric Nephrology
- Palliative Care
- Quality of Life Research
Background:
- Kidney failure significantly impacts quality of life (QoL) for children and young people (CYP).
- The symptom burden experienced by CYP with kidney failure, especially nearing end-of-life, is not well-documented.
- While kidney transplantation is preferred, supportive end-of-life care is crucial for many CYP with kidney failure.
Conclusions:
- There is a substantial lack of evidence regarding the symptom burden in CYP with CKD.
- High prevalence of sleep, mental health, headache, dermatological, and gastrointestinal symptoms was observed.
- Consensus recommendations for evaluating and managing symptoms in CYP with CKD nearing end-of-life are urgently needed.
Background:
Kidney failure at any age has a significant impact on quality of life (QoL) but the overall symptom burden for children and young people (CYP) is poorly described. Kidney failure has no cure and whilst transplantation is the preferred management option, it is not always possible, with patients requiring supportive care at the end of their lives.
Aim:
To use the literature to understand the symptom burden for CYP with kidney failure who are approaching end-of-life.
Methods:
Using three databases, a systematic literature review was performed to identify eligible studies to extract data on symptoms experienced in CYP aged < 21 years with kidney failure. Data extraction was completed by two authors using a pre-designed proforma. Study quality assessment was undertaken using the BMJ AXIS tool.
Results:
A total of 20,003 titles were screened to yielding 35 eligible studies including 2,862 CYP with chronic kidney disease (CKD), of whom 1,624 (57%) had CKD stage 5. The studies included a median of 30 (range 7-241) patients. Symptoms were subcategorised into eight groups: sleep, mental health, gastrointestinal, dermatology, ear, nose and throat (ENT), neurology, multiple symptoms, and ophthalmology. The prevalences of the most commonly reported symptoms were: restless leg syndrome 16.7-45%, sleep disordered breathing 20-46%, hypersomnia 14.3-60%, depression 12.5-67%, anxiety 5.3-34%, overall gastrointestinal symptoms 43-82.6%, nausea and vomiting 15.8-68.4%, abdominal pain 10.5-67.4%, altered appetite or anorexia 19-90%, xerosis 53.5-100%, pruritis 18.6-69%, headache 24-76.2% and ophthalmological symptoms 26%. Within each subgroup, the symptom definitions used were heterogeneous, the methods of assessment were varied and some symptoms, such as pain and constipation, were poorly represented.
Conclusions:
There is a marked lack of evidence relating to the symptom burden for CYP with CKD. This study highlights the high symptom prevalence, particularly in relation to sleep, mental health, headache, dermatological and gastrointestinal symptoms. There is a need for consensus recommendations on the evaluation and management of symptoms for CYP with CKD approaching end-of-life.
Prospero Id:
CRD42022346120.
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