FLANK PAIN HAS A MAJOR NEGATIVE IMPACT ON HEALTH-RELATED QUALITY OF LIFE IN ADPKD: THE CYSTIC I STUDY

Abstract Background and Aims ADPKD is the most common inherited kidney disease in man, a major cause of end-stage renal disease and is a significant medical and economic burden worldwide. However, the impact of this major disease on the quality of life of patients with preserved kidney function has not been systematically explored. Method The CYSTic I study was an observational, prospective study designed to study the natural history of ADPKD in adult patients with preserved kidney function (eGFR ≥30 ml/min/1.73m2). 465 patients were recruited from six expert centres across Europe (Belgium, France, Italy, Netherlands, Spain and UK) with baseline data recorded including HR-QoL (Health-Related Quality of Life) incorporating a Kidney Disease QOL short form questionnaire (KDQoL-SF v1.3), MRI for Total Kidney Volume (TKV) and DNA for genotyping. The cohort was stratified by baseline eGFR, Ht-TKV or genotype and correlated with HR-QOL scores. Bivariate and multivariate analyses were applied to examine the relationship between HRQoL and variables of interest. KDQoL-SF scores were calculated using an online tool provided by the Rand organisation. Results Mean age of the participants was 44 years, 54.6% were female with a mean eGFR of 77ml/min/1.73m2 and Ht-TKV of 849ml/m. 72.3% had PKD1 mutations. 32.5% of participants reported flank pain that was not significantly correlated with eGFR, Ht-TKV or genotype. Of all the variables examined, flank pain showed significant negative associations with the highest number of KDQoL-SF subscale scores assessed (12/20). Conclusion Our results indicate that flank pain is common, likely to be under-reported in routine care but has a major negative impact on patient-reported quality of life.