Chronic Urinary Tract Infection in Children: An Urgent Need for Recognition and Advocacy

AIMS: To gain a preliminary understanding of the experiences of children with chronic urinary tract infection (UTI), and their parents, to inform advocacy for greater awareness of paediatric chronic UTI and improvements in its diagnosis and treatment. METHODS: We conducted semi-structured interviews with the parents of four children (all girls under the age of ten) with chronic UTI symptoms and two adult sufferers whose symptoms began in childhood. Content analysis of the interview transcripts was used to identify key themes. RESULTS: Four key themes were identified: (1) 'diagnostic dismissal and misattribution' (a failure of medical practitioners to recognise and diagnose chronic UTI and their tendency to attribute symptoms to extraneous factors); (2) 'protracted and chaotic care pathways' (difficulty in finding a medical practitioner to appropriately diagnose and treat chronic UTI, and a lack of clear referral pathways); (3) 'impacts on children and families' (negative consequences of chronic UTI for children's health, development and emotional wellbeing, and distress caused to parents due to the child's suffering); and (4) 'the burden of parental advocacy' (parental distress, guilt and exhaustion caused by the struggle to get help for their children). CONCLUSIONS: Clinical guidelines, education and care pathways should be developed to help medical professionals recognise and better meet the needs of children with chronic UTI. As well as better UTI diagnostic and treatment approaches generally, child-specific research is required to develop safe and effective treatment protocols for paediatric patients.