Original Investigation
Patient and Clinician Perspectives on Electronic Patient-Reported Outcome Measures in the Management of Advanced CKD: A Qualitative Study

https://doi.org/10.1053/j.ajkd.2019.02.011Get rights and content

Rationale & Objective

Chronic kidney disease (CKD) can substantially affect patients’ health-related quality of life. Electronic patient-reported outcome measures (ePROMs) may capture symptoms and health-related quality of life and assist in the management of CKD. This study explored patient and clinician views on the use of a renal ePROM system.

Study Design

Qualitative study.

Setting & Participants

12 patients with stage 4 or 5 CKD (non–dialysis dependent); 22 clinicians (6 CKD community nurses, 1 clinical psychologist, 10 nephrologists, 3 specialist registrars, and 2 renal surgeons) in the United Kingdom.

Analytical Approach

Semi-structured interviews and focus group discussion during which patients received paper versions of the Kidney Disease Quality of Life-36 and the Integrated Patient Outcome Scale-Renal to exemplify the type of content that could be included in an ePROM. Thematic analysis of interview transcripts.

Results

4 themes were identified: (1) general opinions of PROMs, (2) potential benefits and applications of an ePROM system, (3) practical considerations for the implementation of ePROMs, and (4) concerns, barriers, and facilitators. Patients were willing to complete ePROMs on a regular basis as part of their care despite clinician concerns about patient burden. Patients assessed the questionnaires favorably. Clinicians suggested that the extent of adoption of renal ePROM systems in routine clinical settings should be based on evidence of significant impact on patient outcomes. Clinicians were concerned that an ePROM system may raise patient expectations to unrealistic levels and expose clinicians to the risk for litigation. Patients and clinicians identified potential benefits and highlighted issues and concerns that need to be addressed to ensure the successful implementation of the renal ePROM system.

Limitations

Transferability of the findings may be limited because only English-speaking participants were recruited to the study.

Conclusions

A renal ePROM system may play a supportive role in the routine clinical management of patients with advanced CKD if the concerns of clinicians and patients can be sufficiently addressed.

Section snippets

Participant Selection

Participants at the host site (UHB) were recruited and data were collected and analyzed simultaneously between August 2017 and May 2018 according to the published protocol (ethics approval [13/02/2017] ref: 17/WM/0010).16 Consenting English-speaking adult patients with stages 4 and 5 CKD (non–dialysis dependent) were purposively recruited because we hypothesized that a cohort with high symptom burden and risk for rapid progression to end-stage kidney disease would benefit most from the ePROM

Study Participants

Participant characteristics are summarized in Tables 1 and 2, and interview characteristics and information on data saturation are provided in Table 3. Focus group members were predominantly female nurses. For this reason, we invited medical doctors for interviews and targeted male doctors to minimize the potential risk for nonresponse bias and increase the diversity of our sample. Examination of the saturation data (Tables S1 and S2) throughout the study suggested that: (1) saturation was

Discussion

This study explores the views of patients and clinicians on the use of an ePROM system in the clinical management of patients with advanced CKD. Consistent with previous literature, patients welcomed the idea of completing ePROMs on a regular basis as part of their care.28 They believed that ePROMs could help clinicians manage their care more efficiently and effectively. A notable finding was the interest expressed by some patients in using ePROM data to improve their knowledge of CKD to

Article Information

Authors’ Full Names and Academic Degrees

Olalekan Lee Aiyegbusi, MBChB, Derek Kyte, PhD, Paul Cockwell, PhD, Tom Marshall, PhD, Mary Dutton, MSc, Natalie Walmsley-Allen, RN, Anita Slade, PhD, Christel McMullan, PhD, and Melanie Calvert, PhD.

Authors’ Contributions

Conceived of and designed study: OLA, MC, DK, PC, TM, MD, NW-A; moderated focus group: AS; conducted the interviews and analyzed the transcripts: OLA; reviewed the data analysis: OLA, MC, DK, PC, TM, CM. Each author contributed important intellectual content during manuscript drafting or revision

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