PATIENT SATISFACTION AND DIETARY OUTCOMES FROM ATTENDING A MULTIDISCIPLINARY CYSTINURIA CLINIC

Abstract

Cystinuria is a genetic disease that leads to frequent cystine stone formation. A reduced methionine (precursor to cystine) diet has been recommended for cystinuria patients, involving maintenance of healthy weight, limiting intake of animal protein and salt whilst increasing vegetable protein, fruit, vegetables and fluid intake. The ability of patients to adhere to these dietary regimes has been questioned. We evaluated the dietetic service and dietary changes within our multidisciplinary cystinuria clinic using food frequency questionnaires (ffqs), dietary change questionnaires (dcqs) and diet histories. Most patients were seen by the dietitian 6–12 monthly. 100% of patients felt they benefited from dietetic input. There was a move away from ffqs due to them being difficult and cumbersome to complete. Dcqs and diet histories revealed 23/28 increased fruit and vegetable intake, 20/28 decreased salt intake, 20/28 decreased animal protein intake, 14/28 increased vegetable protein intake and 9/28 increased fluid intake. There were a few discrepancies in reported change between dcqs and diet histories, supporting the use of multi-source feedback for diet analysis. Patients had varying degrees of success with making changes to each dietary parameter. Multi-source diet analysis allowed us to develop tailored consultations. All patients made some positive dietary changes which may help prevent stone formation. The areas of least change were fluid (due to changes made prior to clinic attendance) and vegetable protein. Our results support the need for continued dietetic input. These results should be re-audited to check that patients are maintaining the changes made.