Electronic Patient-Reported Outcome Measures in Renal Care Settings

Health-related quality of life (HRQoL) is substantially affected among patients with chronic kidney disease (CKD). Patients with CKD report clusters of nonspecific symptoms, including pain, fatigue, and pruritus, that adversely affect their physical, emotional, and psychological well-being.

Measures such as estimated glomerular filtration rate are established indicators of health status; however, these hard parameters may not represent the impact of CKD on patients’ symptoms and HRQoL. Gathering patient-reported outcome measures (PROMs) using validated self-reported questionnaires has been on the increase, including in routine renal clinical practice.

Collection of electronic PROMs (ePROMs) using computers, smartphones, and tablets is also on the rise. Use of these real-time data could be beneficial in tailoring treatment to individual patient needs and reducing clinical appointments in stable patients. Further, ePROMs may promote patient-centered care by identifying health-related issues important to patients, facilitating patient-clinical communication and shared decision making.

Olalekan Lee Aiyegbusi, MBChB, and colleagues recently conducted a qualitative study designed to examine the perspectives of patients and clinicians on the use of a renal ePROM in development by the Centre for Patient Reported Outcomes Research at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust (UHB) in the United Kingdom. The researchers sought to gather insights that would help inform the design, implementation, and delivery of such a system in routine clinical practice. Results of the study were reported in the American Journal of Kidney Diseases [2019;74(2):167-178].

Participants at the host site (UHB) were recruited and data were collected and analyzed between August 2017 and May 2018. Patients with non–dialysis-dependent CKD stages 4 and 5 were recruited to test the hypothesis that a cohort with high symptom burden and risk for rapid progression to end-stage renal disease would benefit most from the ePROM system. The study cohort included 12 patients with stage 4 or 5 CKD, and 22 clinicians (six CKD community nurses, one clinical psychologist, 10 nephrologists, three specialist registrars, and two renal surgeons).

Participants were given information sheets that outlined the study aims and objectives and also outlined the UHB ePROM system being developed. Patients who agreed to be interviewed were provided with advance copies of the Kidney Disease Quality of Life-36 and Integrated Patient Outcome Scale-Renal questionnaires. Interviews with patients were conducted either face-to-face or on the telephone, depending on patient preference. Clinicians participated in semi-structured interviews and focus groups.

Of the 12 patients, 11 were ≥50 years of age, five were women, seven were British-white, four were British-Asian, and one was Irish-white. Seven were retired, four were employed, either full- or part-time, and one was unemployed. Examination of the saturation data throughout the study suggested that: (1) saturation was reached at the 10th patient and 12th clinical interviews; (2) there were no appreciable differences in the views held by nurses and doctors; and (3) there were no sex differences in the views held by participants.

Four themes were highlighted in the interviews/focus groups: (1) general opinions of PROMs; (2) possible benefits and applications of ePROMs; (3) practical considerations; and (4) concerns, barriers, and facilitators.

Despite clinical concerns regarding patient burden, patients indicated they were willing to complete ePROMs on a regular basis as part of their care. In general, patients had favorable assessments of the questionnaires. Patients felt that ePROMs could improve or open lines of communication between patients and clinicians and would provide clinicians with insight into patient experiences and care priorities. Patients with stable CKD suggested that use of ePROMs could reduce the frequency of their hospital appointments and the need to take time off from work.

Clinicians felt that the extent of adoption of renal ePROM systems should be based on evidence of significant impact on patient outcomes. Clinicians felt that ePROMs would be useful adjuncts to traditional clinical management, but would be insufficient on their own for obtaining research funding or changing health policy. Clinicians also expressed concerns that ePROMs would raise patient expectations to unrealistic levels and expose clinicians to the risk for litigation.

There was no clear consensus on the optimal frequency of use of ePROMs; however, both patients and clinicians felt it would become burdensome if an ePROM were administered more than once a month. Both groups agreed the best time to complete an ePROM was at home prior to a clinical appointment. The groups also agreed that everyone involved in a patient’s care, including the patient, should have access to ePROM data.

Patients’ feelings regarding potential barriers to an ePROM system included a lack of interest in the system, a dislike of information technology, and limited abilities and/or access to electronic devices and the internet. Potential barriers cited by the clinicians included alert fatigue, limited financial resources, and time pressures during clinical consultations.

Citing limitations to the study, the researchers named the possible limited transferability of the findings because only English-speaking participants were recruited to the study.

In conclusion, the researchers said, “The use of a renal ePROM system has the potential to enhance routine clinical practice by facilitating patient engagement and involvement in their care and providing clinicians with timely information that may guide clinical management. The rapid developments in information technology may also assist with the integration of ePROM data with other routinely collected electronic health data, thus facilitating its impact. However, patients and clinicians need to be involved at every stage in the development of ePROM systems. Patient and clinician views should be sought, considered, and appropriately used to facilitate their subsequent engagement with ePROM interventions. The degree of patients and clinician engagement may crucially influence the usefulness of ePROMs postimplementation.”

Takeaway Points

  1. Electronic patient-reported outcome measures (ePROMs) may be of use in management of chronic kidney disease (CKD). Researchers in Great Britain conducted a qualitative study to examine patient and clinician perspectives on renal ePROMs.
  2. Despite clinician concerns about patient burden, patients indicated they were willing to complete ePROMs on a regular basis as part of their care.
  3. Clinicians felt the extent of adoption of renal ePROM systems in renal care should be based on evidence of significant impact on patient outcomes.