Grant: KRESCENT / CIHR New Investigators

People living with end-stage kidney disease need dialysis or transplantation to stay alive. This illness significantly impacts peoples’ views of their health, emotions, work, and relationships. Clinicians need patients’ views about this so that they can respond to any concerns. One way to do this is to use patient-reported outcomes that ask people to share the impact of an illness on their life. Examples of patient-reported outcomes include surveys asking about quality of life or symptoms. Embedding feedback from patients into routine practice is especially important in end-stage kidney disease because of the physical and other quality of life challenges these patients face when living with kidney failure. Use of patient-reported outcomes may improve the care of people living with kidney disease. Patient-reported outcomes provide vital and often missing information to the healthcare team. The purpose of my research is to study the impact of routine use of electronically provided patient-reported outcomes data in kidney care and influence positive change in health services. My research will include 6 projects: 1. Clinicians and patients in home dialysis will be interviewed about how patient-reported outcome results are now used, and the benefits/challenges of providing them electronically. 2. Reported research will be examined to see what results others have found when patient-reported outcomes are used in kidney care, either with paper or electronically. 3. Previous research will be inspected to find out how patient-reported outcomes have been used with seniors living at home, and their family members, when their care needs shift to primary, home, acute, or emergency care. 4. Home dialysis patients will complete patient-reported outcomes electronically at their clinic visit. Their clinicians will receive this data, as well as education about how to use these results in their care. 5. Home care patients and families will routinely provide patient-reported outcomes electronically to their home care nurse or nurse practitioner to support interventions that address quality of life concerns. 6. Patients and family members living with kidney disease/transplantation will complete patient-reported outcomes online to report on their health, coping and quality of life. Patient-reported outcome information is essential for clinicians to care for people affected by end-stage kidney disease with a person-centred approach. Patients may also be supported to manage their illness, reduce disease burden, and enhance their quality of life. Findings of this research may ultimately improve the quality of health services for Canadians living with end-stage kidney disease.