Skip to main content
. 2023 Jul 12;13(7):e070927. doi: 10.1136/bmjopen-2022-070927

Table 1.

Overview of ePRO systems (see online supplemental file 4 for additional system data)

Name of system Country Population In current use
yes/no		 System ePROs
ANZDATA SWIFT PROMs Module21 58 75–77 Australia In-centre HD Yes—pilot study reported, Cluster RCT in progress SONG­HD fatigue measure
IPOS­Renal
EQ­5D­5L
cPRO-Collaborate Kidney Care40 USA CKD Stages 1­3
CKD Stages 4­5 pre-dialysis		 Yes—clinical demonstration model PROMIS and FACIT measures
Cambian (ePRO-KIDNEY)16 17 42 78–81 Canada Home HD, PD No—platform used within reported research projects Patient Assessment of Care for Chronic Conditions­20 questionnaire (PACIC­20)
Kidney Disease Quality of Life­36 (KDQOL­36)
Edmonton Symptom Assessment System renal (ESAS­r), EQ­5D­5L
OPT-ePRO68 82–84 UK CKD Stages 1­3, CKD Stages 4­5 pre-dialysis, In­centre HD, Home HD, PD
transplant, conservative care		 No—pilot study reported POS-S-RENAL, EQ-5D-5L
Penguin (Cievert Ltd)
(no published data)		 UK Transplant Yes—research pilot in progress New study-specific measure
RePROM9 23 85–87 UK CKD Stages 4­5 pre-dialysis No—pilot study reported. New study-specific measure
Unnamed System 188 Canada In-centre HD, transplant No—in development PROMIS CATs (unspecified)88
*Survey data only—developers declined participation in optional FU interview
‘Your symptoms matter’41 89 Canada In-centre HD Yes—pilot study reported ESAS-r: Renal
Ambuflex
(PRO-KID Non-inferiority pragmatic randomised controlled trial evaluating incorporating Ambuflex platform)24 62 90–93 		Denmark Ambuflex
CKD Stages 4­5 pre dialysis, Conservative Care
(PRO-KID
CKD Stages 4­5 pre dialysis, home)		 Ambuflex—Yes
(PRO-KID—trial in progress,		 Ambuflex –
27 item Renal Disease questionnaire90
(PRO-KID

  1. Renal-specific domains, items from

    • KDQOL-SF

    • EORTC

    • SF-GH1

  2. Additional research PROs24
SMaRRT-HD20 43 USA In-centre HD Unknown—feasibility study reported SMaRRT-HD —Study-specific measure
**System identified only—no survey or interview data included in evidence synthesis
‘Derby Evaluation of Illness’72 UK CKD stages 4/5 pre-dialysis, in-centre HD, PD Unknown—feasibility study reported Six separate domains assessed by VAS: general well-being, pain, sleep, breathing, energy, fistula function and appetite.
EMPATHY study22 60 67 94 Canada In-centre HD Yes—Cluster RCT in progress ESAS-r: Renal/IPOS-Renal and/or the EQ-5D-5L
K-Pal19 USA Patient’s ≥60 years of age with ESRD on HD Unknown—feasibility study reported Short-Form McGill Pain Questionnaire 2 (SF-MPQ-2), Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder 7 Item Survey (GAD-7), Dialysis Symptom Index (DSI), KDQOL-36
eNephro44 France CKD stage 3B/4, stage 5D CKD on dialysis (PD/HD), Transplant Unknown—Pragmatic RCT (anticipated date of study completion December 2018 NCTO 2082093) Symptoms, Hospitalization Anxiety Depression Scale (HADS) KDQoL 36, ReTransQoL (for transplant patients) to assess trial outcomes
Dutch Renal Registry95–97 The Netherlands Patients undergoing dialysis Yes—part of development of
national registry of PROMs		 Dialysis Symptom Index (DSI), SF-12

CKD, chronic kidney disease; EMPATHY, Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care; EORTC, European Organisation for Research and Treatment of Cancer; ePRO, electronic patient-reported outcome; EQ5D5L, 5-level EuroQol 5 dimension questionnaire; ESRD, End Stage Renal Disease; FACIT, Functional Assessment of Chronic Illness Therapy; HD, haemodialysis; IPOS Renal, Integrated Palliative Care Outcome Scale Renal; K-Pal, iPad based ePROM application; PD, Peritoneal Dialysis; POS-S-RENAL, Palliative Care Outcome Scale - Symptoms - Renal; PROMIS, Patient-Reported Outcomes Measurement Information System; RCT, Randomised Controlled Trial; RePROM, The use of an electronic Patient-Reported Outcome Measure in the Management of Patients with Advanced Chronic Kidney Disease (CKD); SF-12, Short-form 12 item; SF-GH1, Short form 36_Global Health1; SMaRRT-HD, Symptom Monitoring on Renal Replacement Therapy-Hemodialysis; SONG HD, Standardised Outcomes in Nephrology Haemodialysis; VAS, Visual Analogue Scale.