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.