Development and usability testing of an electronic patient-reported outcome measure (ePROM) system for patients with advanced chronic kidney disease

Aiyegbusi, Olalekan Lee; Kyte, Derek; Cockwell, Paul; Marshall, Tom; Dutton, Mary Ann; Walmsley-Allen, Natalie; Auti, Ram; Calvert, Melanie

doi:10.1016/j.compbiomed.2018.08.012

Cited by 26 publications

(28 citation statements)

References 65 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Routine integration of ePRO data in real-time point-of-care offers valuable data to inform person-centered care, as well as care efficiencies. 31,37-41 Yet, this is a complex intervention that requires attention to workflow. 40 In this study, the KDQOL™-36, a nonrequired PROM, was rarely discussed and incorporated into practice.…”

Section: Discussionmentioning

confidence: 99%

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

Schick‐Makaroff

Tate

Molzahn

2019

Can J Kidney Health Dis

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionmentioning

confidence: 99%

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

Schick‐Makaroff

Tate

Molzahn

2019

Can J Kidney Health Dis

View full text Add to dashboard Cite

show abstract

“…User acceptance testing of a prototype version of the system, described in detail elsewhere [35], was conducted with 8 adult patients with advanced CKD (stages 4/5); the average usability and satisfaction score was 4.6 (5-point scale). Iterative changes were made to the system in response to the findings as outlined below.…”

Section: Design Componentsmentioning

confidence: 99%

Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease

Kyte

Anderson

Auti

et al. 2020

J Patient Rep Outcomes

Self Cite

View full text Add to dashboard Cite

Background: Effective management of patients with chronic kidney disease (CKD) relies on timely detection of clinical deterioration towards end stage kidney failure. We aimed to design an electronic Patient-Reported Outcome Measure (ePROM) system, which would allow patients with advanced CKD (pre-dialysis) to: (i) remotely self-report their symptoms using a simple and secure online platform; (ii) share the data with the clinical team in real-time via the electronic patient record to help optimise care. We adopted a staged development process which included: a systematic review of PROMs used in CKD; formation of a co-design team; prototype system design/development, user acceptance testing and refinement; finalisation of the system for testing in a pilot/feasibility trial. Results: A co-design team was convened, including patients with lived experience of CKD; clinical team members; IT/Informatics experts; academics; and Birmingham Clinical Trials Unit representatives. A prototype system was developed and iterative changes made before finalisation during a series of operational meetings. The system allows patients to remotely self-report their symptoms; provides tailored self-management advice; allows monitoring of real-time patient ePROM data; sends automated notifications to the patient/clinical team in the advent of a severe symptom report; and incorporates longitudinal ePROM symptom data into the electronic patient record. Feasibility of the system will be evaluated as part of the National Institute for Health Research funded RePROM (Renal electronic Patient-Reported Outcome Measure) pilot trial (ISRCTN12669006). Conclusions: Routine ePROM collection with real-time feedback has the potential to improve outcomes and reduce health service costs. We have successfully developed a trial-ready ePROM system for advanced CKD, the feasibility of which is currently being explored in a pilot trial. Assuming feasibility is demonstrated, formal evaluation of efficacy will take place in a future multi-centre randomised controlled trial.

show abstract

“…Based on the ISO definition, the three measures of usability are effectiveness, efficiency and satisfaction. Effectiveness refers to the ability of participants to perform tasks in order to achieve pre-determined goals completely and accurately without negative consequences [23,24]. A negative consequence in the case of an ePRO system might be the accidental selection of a questionnaire option (due to suboptimal interface layout) which would send a red alert to clinicians.…”

Section: Usability and Usability Testingmentioning

confidence: 99%

“…The complexity of an ePRO system also needs to be assessed when planning its usability testing. Most ePRO systems involve the adaptation of existing paper PRO questionnaires [24,29]. A basic adaptation keeps the electronic version as identical to the paper version as possible.…”

Section: Complexity Of the User Pathway And The Epro Systemmentioning

confidence: 99%

“…However, they usually have smaller screens which might influence the visual display and font sizes of ePROs. This could be an issue for participants with poor eyesight and this should be considered when selecting study participants [24]. The United States Access Board and the World Wide Web Consortium have published detailed guidelines to improve IT accessibility for all individuals regardless of disability [59][60][61].…”

Section: Design Of Epro Systemsmentioning

confidence: 99%

See 1 more Smart Citation

Key methodological considerations for usability testing of electronic patient-reported outcome (ePRO) systems

Aiyegbusi

2019

Qual Life Res

Self Cite

View full text Add to dashboard Cite

Introduction Recent advances in information technology and improved access to the internet have led to a rapid increase in the adoption and ownership of electronic devices such as touch screen smartphones and tablet computers. This has also led to a renewed interest in the field of digital health also referred to as telehealth or electronic health (eHealth). There is now a drive to collect these PROs electronically using ePRO systems. Method However, the user interfaces of ePRO systems need to be adequately assessed to ensure they are not only fit for purpose but also acceptable to patients who are the end users. Usability testing is a technique that involves the testing of systems, products or websites with participants drawn from the target population. Usability testing can assist ePRO developers in the evaluation of ePRO user interface. The complexity of ePRO systems; stage of development; metrics to measure; and the use of scenarios, moderators and appropriate sample sizes are key methodological issues to consider when planning usability tests. Conclusion The findings from usability testing may facilitate the improvement of ePRO systems making them more usable and acceptable to end users. This may in turn improve the adoption of ePRO systems post-implementation. This article highlights the key methodological issues to consider and address when planning usability testing of ePRO systems.

show abstract

Development and usability testing of an electronic patient-reported outcome measure (ePROM) system for patients with advanced chronic kidney disease

Abstract: Our study suggests that individuals with advanced CKD may find the Renal ePROM system acceptable and easy to use. The use of the Renal ePROM may complement clinician-reported outcomes and assist with the management of patients with advanced CKD.

Cited by 26 publications

References 65 publications

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

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

Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease

Key methodological considerations for usability testing of electronic patient-reported outcome (ePRO) systems

Contact Info

Product

Resources

About