A recently published study uses patient reports on the impact of cystaemine to discuss treatment-associated problems, adherence to therapy and possible ways to improve it.

The conclusion of the study was: "This qualitative study offers insights on nephropathic cystinosis from the point of view of patients and parents/caregivers. The critical steps during patient journey and the pitfalls for therapeutic adherence have been highlighted, opening ways to improve not only disease management but also the quality of life of patients with cystinosis."

A lay summary is provided as supplementary material: https://www.drugsincontext.com/patient-journey-in-cystinosis-focus-on-non-adherence-and-disease-management/