Prospective surveillance study of conservative kidney care in the UK and the Republic of Ireland: a British Paediatric Surveillance Unit study

Objective:
For most children with kidney failure, a decision is made to commence kidney replacement therapies (KRT); however, little is known about children for whom a decision is made to manage their kidney condition conservatively, without the use of KRT. This study’s aim was to determine the incidence of children<16 years reaching kidney failure who received conservative kidney care and to describe their characteristics, care and outcomes.

Setting and design:
We conducted a prospective study in the UK and the Republic of Ireland (September 2020 to October 2022) through the British Paediatric Surveillance Unit.

Results:
Over the surveillance period, 27 confirmed cases were reported (25 in the UK, 56% male). The median age at notification was 2.6 (IQR 0.3–8.7) years; 52% were white, 41% Asian and 7% of black ethnicity. The median number of comorbidities recorded was 5 (IQR 2–7). All children were referred to nephrology; 92% were referred to palliative care. Most (67%) were in kidney failure by the time treatment discussions commenced. Few (<5) received a trial of KRT. After 12 months, 18 children (73%) had died, 5 remained on conservative management and 2 started KRT.

Conclusion:
Children receiving conservative kidney care account for approximately one-tenth of all incident paediatric kidney failure in the UK. While families receive specialist and palliative care support, further investigation is needed to understand whether treatment discussions could occur in a timelier fashion. As a vulnerable group of children, routine national data capture, as for the KRT-treated cohort, would support standardisation of care, audit and benchmarking.