Assessment of Patient Experience of Care in Home Dialysis Around the World: Enhancing the Patient’s Voice in Home Dialysis Care and Research

Abstract

With the global growth in the use of home dialysis modalities, there is a need to better understand patients’ experiences with their home dialysis care. Patient-reported experience measures or PREMs, are standardized survey questionnaires that allow patients to provide input on processes and experiences of care in a confidential and validated manner. Until recently, no validated PREM has been available for assessment of patient-reported experience of care for home dialysis modalities, including peritoneal dialysis or home hemodialysis. The Home Dialysis Care Experience instrument (Home-DCE) is a newly developed and content-valid PREM for use among patients treated with home dialysis modalities. The survey instrument includes 26 core survey questions and 20 demographic questions, and is now available in English, Spanish, and French. Domains of care assessed in the Home-DCE include staff education and patient-centered communication, care coordination, patient safety, concern and helpfulness of the care team, and staff care proficiency. Worldwide use of the Home-DCE will allow incorporation of patients’ experiences and preferences in initiatives to enhance quality of care for home dialysis patients globally. Translation and deployment of a PREM in additional languages should be done using established cultural adaptation methods, the gold standard for which is termed linguistic validation. Translation and linguistic validation are hurdles to global use of the Home-DCE, but challenges that should be met to enhance home dialysis patients’ voice in clinical kidney care.