Abstract
INTRODUCTION: Engaging with patients and the public is essential to design and deliver impactful research. Enhancing the relevance of research and tailoring treatments to align with patients' preferences can facilitate improved clinical care. METHODS: We aimed to identify the research, support and treatment priorities of individuals with kidney stone disease (KSD) using a 25-question survey in inpatient and outpatient urology departments. RESULTS: Forty-four individuals with KSD responded to our survey; 28 (64%) had experienced multiple KSD episodes and 11 reported 5 or more episodes. Median self-rated quality-of-life (QoL) impact (0 = negligible; 10 = severe) was 7.00 out of 10.00 (interquartile range [IQR]: 5.00-9.00), equivalent in individuals with single and recurrent stone episodes. Pain (n = 34), haematuria (n = 28) and anxiety (n = 22) were the primary factors contributing to QoL impact. Participants prioritised research into preventing recurrence, alleviating pain and slowing stone growth. More than one-third desired more information about KSD. Most (n = 36) felt 'likely' or 'very likely' to take medication to reduce their risk of KSD and 25 would commit to life-long therapy. Daily dosing was acceptable to 13 participants if risk of KSD recurrence was reduced by 50%, rising to 34 respondents if risk of recurrence was reduced by 75%. Most respondents (n = 44) expressed willingness to have genetic testing to facilitate personalised medicine research. CONCLUSIONS: Our findings emphasise symptoms contributing to reduced physical and psychological wellbeing in patients with KSD. We highlight the need for research into developing therapies to prevent stone recurrence, alleviate pain and slow stone growth, and for educational materials. Responses indicate an appetite for personalised medicine and oral medications in KSD.