ASPIRED: Assessing Patient-Reported Experience of Care for Home Dialysis

Description: 

This study aimed to develop and validate one instrument to measure patient-care experience satisfaction for peritoneal dialysis (PD) and home hemodialysis (HD) with input from patients, caregivers, and kidney care professionals.  The ultimate goal of development and validation of this instrument is for dissemination and use in clinical practice for quality improvement initiatives, tailoring aspects of care to patients’ values and preferences, and to provide an enhanced voice for home dialysis patients in their ongoing care.  Instrument development was accomplished using a mixed-methods multiple stakeholder approach that employed focus groups, interviews, and a prioritization survey among patients, nurses, care partners, and nephrologists.

Results/Findings:

Development of a final instrument for measurement of patient experience of care in home dialysis was completed in March 2020, and demonstrated that the home dialysis domains of highest importance to patients for inclusion were patient education and communication, care coordination, and personalization of care. In collaboration with Satellite Healthcare, the instrument, entitled the Home Dialysis Care Experience (Home-DCE) instrument, was administered to nearly 500 patients undergoing PD or home HD at Satellite dialysis facilities in the summer and fall of 2020.  Results from the survey administration will be used to determine the psychometric (measurement) properties of the Home-DCE instrument.