Recurrent urinary tract infection (rUTI) affects approximately 100 million people worldwide annually, yet research and clinical care have lacked validated tools to capture patient experienced impact, symptom burden, and consequences for quality of life. This thesis addresses this fundamental measurement gap through five interconnected studies, collectively establishing theoretical understanding, validating rUTI-specific patient-reported outcome measures (PROMs), and contextualising these tools within rUTI healthcare experiences. Paper 1 (the rUTI Illness Model Paper) employed structural equation modelling to establish a novel theoretical model, demonstrating that coping mechanisms mediate the relationship between perceived health and psychological wellbeing, with resilience protective and pain catastrophising detrimental. Unique vulnerable patient phenotypes emerged, with younger individuals and those reporting lower household income at greater risk of poorer psychological outcomes. Papers 2 and 3 (the RUTISS and RUTIIQ Validation Papers) completed confirmatory validation of the Recurrent UTI Symptom Scale (RUTISS) and the Recurrent UTI Impact Questionnaire (RUTIIQ) using item response theory analysis, establishing excellent structural validity and reliability. Paper 4 (the RUTISS Responsiveness Paper) demonstrated the responsiveness of the measure to antibiotic treatment and determined its minimal clinically important difference (MCID), enabling its clinical interpretation and application as a clinical trial endpoint. Paper 5 (the Lived Experience Paper) employed reflexive thematic analysis of interviews with 26 UK-based people living with rUTI, identifying four barriers to quality rUTI healthcare ('Struggling with the System,' 'Unheard Voices,' 'Shouldering Blame,' 'Forced to Become an Expert') and four facilitators (‘Feeling Validated,’ ‘Partners in the Puzzle,’ ‘Continuity and Connection,’ ‘Expanding the Toolkit’). Mapping onto the Theoretical Domains Framework generated theory-informed intervention recommendations and supported identification of appropriate behaviour change techniques. Together, this work establishes the RUTISS and the RUTIIQ as the first validated, condition specific PROMs for rUTI, providing essential tools for clinical practice, research, and patient empowerment. The findings demonstrate that rUTI burden is biopsychosocial and multidimensional, requiring assessment approaches extending beyond microbiological endpoints. These contributions advance patient-centred care for the extensive global community living with rUTI.
Abigail F. Newlands (Thu,) studied this question.