Patient Focused Development

Prioritizing Symptoms of ESRD Patients for Developing Therapeutic Interventions

While dialysis is a life-saving therapy for patients with end stage kidney disease (ESKD), a variety of symptoms occur following treatment that significantly diminishes the quality of life of people living with kidney disease. Patients have identified the need to alleviate these symptoms as a key research area, prioritizing it above other health outcomes. Alleviation of these symptoms could result in increased quality of life and better patient-reported outcome measures. Despite the patient demand for new therapies to address these symptoms, no drug or device has been approved by the US Food and Drug Administration (FDA) to date. KHI assembled a workgroup to confirm and prioritize symptoms experienced by ESKD patients. After identifying three prioritized symptoms, the group then identified near-term, actionable research goals for these prioritized symptoms. Learn more about this project here.

Symptom Prioritization among Adults Receiving In-Center Hemodialysis: A Mixed Methods Study Fostering Innovation in Symptom Management among Hemodialysis Patients Paths Forward for Insomnia, Muscle Cramps, and Fatigue

Advancing Technologies to Facilitate Remote Management of Patient Self-Care in Renal Replacement Therapy (RRT)

There is uncertainty regarding the approval of advanced medical devices, accessories, software, and mobile medical applications for consumer use. Reimbursement policies vary significantly across Medicaid, Medicare, and commercial insurance. This regulatory and payer misalignment and the knowledge gap is hindering patient access to technologies and services that have potential to improve outcomes for patients on home based therapies. KHI assembled a workgroup tasked with addressing the state of remote monitoring wireless health/telemedicine technology that can be utilized to treat patients with kidney disease and assessing potential clinical and economic value. This information will be used to address key regulatory, legal, legislative, and reimbursement barriers affecting the adoption and usage of such technologies. The workgroup developed a white paper and presented their findings at a workshop. Learn more about this project here.

Perspectives from the Kidney Health Initiative on Advancing Technologies to Facilitate Remote Monitoring of Patient Self-Care in RRT