Remote follow-up based on patient-reported outcomes in patients with chronic kidney disease: A qualitative study of patient perspectives

Abstract

Background Patient-reported outcomes (PROs) are increasingly used in outpatient follow-up. PRO-based remote follow-up offers a new healthcare delivery model, where PROs are used as the basis for outpatient follow-up in patients with chronic kidney disease. However, the patient’s perspective of this novel remote care delivery remains unknown. Objectives This study aimed to explore the patients’ experiences using PROs in remote care and how this mode of follow-up may enhance patient engagement. Design A qualitative approach was employed, guided by Focused Ethnography and Interpretive Description. Participants Purposively, 15 patients with chronic kidney disease experienced with PRO-based remote follow-up in 3 renal outpatient clinics in the Central Denmark Region, were recruited. Measures Field studies comprising participant observation in remote PRO consultations and individual, semi-structured interviews with the patients constituted the empirical data. Thematic analysis was performed according to Braun and Clarke’s six-phase process. Results PRO-based remote follow-up may enhance patient engagement by a) improving communication, b) increasing disease knowledge, c) inducing flexibility, d) ensuring clinician feedback on PRO data, and e) prompting clinical action. Barriers to enhanced patient engagement were identified as a) lack of feedback on PRO data, b) lower disease knowledge, c) PRO in competition with biomedical data, and d) loss of personal relation. Conclusion PRO-based follow-up in remote care holds several advantages for the patients. However, some barriers need clinical awareness before PROs may enhance the patients’ engagement in remote follow-up. Future studies should explore the impact of involving relatives in PRO-based follow-up.

Remote Symptom Monitoring Using Patient-Reported Outcomes in Patients With Chronic Kidney Disease: Process Evaluation of a Randomized Controlled Trial

“…In total, 12.9% of the patients needed course support, highlighting the benefit of having someone to call when problems occur. Prior findings from a parallel qualitative study, in which we interviewed 15 patients in the PROKID trial, support this finding [ 38 ].…”

“…However, data from this process evaluation study found that the physicians merely assessed 88.5% of the questionnaire responses received. This might indicate observer bias in the qualitative study [ 38 ], showing a falsely high result, although it might also indicate a false lower result in our study because of recall bias, as it seemed as if the physicians actually opened and assessed the patients’ PRO responses but forgot to approve and document the responses in the AmbuFlex database. However, it is a well-known challenge to get clinicians to assess and approve patients’ PRO responses [ 19 , 43 ].…”

“…Another possible explanation for the high usage percentages may be the procedures used to approach and recruit patients. We included newly referred patients, and it became clear that most preferred no follow-up or remote follow-up, probably due to a feeling of being more ill when entering a hospital [ 38 ] or a general lack of experience attending outpatient follow-up. Patient-reported reasons for nonparticipation confirmed this finding, as 7% of the eligible patients declined participation due to preference for telephone consultation or no attendance.…”

“…Evidence from a meta-analysis suggests that for the safety and continuity of care, it is essential to have as few different health care professionals as possible [ 40 ]. A qualitative study integral to the PROKID intervention concluded that barriers to patient engagement in PRO-based remote follow-up are unfamiliarity with the physician and remote follow-up challenging the patient-physician relationship [ 38 ]. Furthermore, the involvement of multiple physicians in reviewing each patient over the 18 months posed a challenge, leading to diminishing familiarity with the medical history of the patients.…”

“…A prior study of field observations during the PRO consultations showed that the extent to which the physicians incorporated the patient responses into the consultations reached almost 100% [ 38 ]. However, data from this process evaluation study found that the physicians merely assessed 88.5% of the questionnaire responses received.…”