Use of Electronic Patient Reported Outcomes in Clinical Nephrology Practice: A Qualitative Pilot Study

BACKGROUND: Use of patient-reported outcome measures (PROM) in clinical practice can offer clinicians important information about the impact of illness on patients and their quality of life. Electronic reporting of patient-reported outcomes (ePROs) provide quick access of this information to the health care team. Although this type of information is acknowledged to be critical to not only improving the quality of care but also involving patients in care planning, little is known about how ePRO reports can be used in nephrology clinics to enhance person-centered care. OBJECTIVE: The purpose of this research was to examine how ePROs were used in home dialysis clinics. DESIGN: A pilot qualitative research design was employed. SETTING: The study was conducted in 2 home dialysis clinics over 6 months. PATIENTS: A total of 99 home dialysis patients and 12 nurses participated in the study. MEASUREMENTS: Patients completed 2 ePROs (the Edmonton Symptom Assessment System revised for renal patients and Kidney Disease Quality of Life-36) prior to their clinic appointment, and results were given to their health care providers. Nurses saw patients first, along with ePRO data. Patients and nurses consented to having their clinic interactions observed and audio recorded (n = 169). METHODS: Summative content analysis was used to synthesize the data. RESULTS: The ePRO data were used to discuss 24 specific issues (brought up a total of 456 times over 165 interactions), most frequently: itchiness (n = 55), appetite (n = 51), problems with sleeping (n = 50), tiredness (n = 46), and shortness of breath (n = 45) as well as overall patient health and the general effects of kidney disease on the patient’s daily life. The issues that most often prompted a change in care plan, referral to another health care professional, or further assessment included itching (n = 23), depression (n = 18), tiredness (n = 13), sleeping (n = 12), anxiety (n = 11), and disease interfering with daily life (n = 7). LIMITATIONS: Limitations include the duration of follow-up (6 months), the restriction to 2 home dialysis clinics, and the potential for the Hawthorne effect due to observation. CONCLUSIONS: Use of these ePROs in the home dialysis clinics provided useful information that guided focused assessments and augmented standard assessments to support person-centered care. Further studies are warranted to identify whether this practice offers benefits over usual care.