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

BACKGROUND Chronic kidney disease (CKD) is a long-term medical condition associated with symptoms which may negatively impact on patients' health-related quality of life (HRQOL). Patient-reported outcome (PRO) measures or questionnaires may be used to capture symptoms/HRQOL experienced by patients with advanced CKD. METHOD Two PRO questionnaires were electronically adapted and incorporated in an electronic system developed at University Hospitals Birmingham NHS Foundation Trust (UHB), Birmingham. Usability testing was conducted with patients with advanced CKD. Qualitative methodology was used to elicit participants' views. RESULTS Participants had a mean age of 64.3 years (range: 36-87 years). All owned electronic devices and had access to the internet. The mean time required to complete the two electronic questionnaires was 15.9 min (range = 8-34 min). Patients who had difficulties with the system were those who had the least experience of using the internet and electronic devices. The average usability and satisfaction score was 4.6 (5-point scale). CONCLUSIONS 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.

[1]  N. Keating,et al.  Proxy and patient reports of health-related quality of life in a national cancer survey , 2018, Health and Quality of Life Outcomes.

[2]  K. Schick-Makaroff,et al.  Brief communication: patient satisfaction with the use of tablet computers: a pilot study in two outpatient home dialysis clinics , 2014, Canadian journal of kidney health and disease.

[3]  William B. Lober,et al.  Development and usability testing of a web-based cancer symptom and quality-of-life support intervention , 2015, Health Informatics J..

[4]  J. S. Hunter,et al.  Statistics for Experimenters: Design, Innovation, and Discovery , 2006 .

[5]  M. Unruh,et al.  Why does quality of life remain an under‐investigated issue in chronic kidney disease and why is it rarely set as an outcome measure in trials in this population?: Clinical Epidemiology in Nephrology , 2017, Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association.

[6]  David Cella,et al.  Recommendations on evidence needed to support measurement equivalence between electronic and paper-based patient-reported outcome (PRO) measures: ISPOR ePRO Good Research Practices Task Force report. , 2009, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[7]  S Camille Peres,et al.  Testing Usability and Acceptability of a Web Application to Promote Physical Activity (iCanFit) Among Older Adults , 2014, JMIR human factors.

[8]  Shiming Yang,et al.  Usability of a CKD educational website targeted to patients and their family members. , 2012, Clinical journal of the American Society of Nephrology : CJASN.

[9]  Tiffany C. Veinot,et al.  Transforming consumer health informatics through a patient work framework: connecting patients to context , 2015, J. Am. Medical Informatics Assoc..

[10]  Susan S. Woods,et al.  Barriers and drivers of health information technology use for the elderly, chronically ill, and underserved. , 2008, Evidence report/technology assessment.

[11]  Ron Kohavi,et al.  Controlled experiments on the web: survey and practical guide , 2009, Data Mining and Knowledge Discovery.

[12]  Panayiotis Zaphiris,et al.  A systematic approach to the development of research-based web design guidelines for older people , 2007, Universal Access in the Information Society.

[13]  John L. Arnott,et al.  Methods for human – computer interaction research with older people , 2007, Behav. Inf. Technol..

[14]  Carlos Jensen,et al.  What health topics older adults want to track: a participatory design study , 2013, ASSETS.

[15]  M. Tonelli,et al.  Chronic kidney disease and the aging population. , 2014, Iranian journal of kidney diseases.

[16]  A. Slade,et al.  Using Patient-Reported Outcome Measures (PROMs) to promote quality of care and safety in the management of patients with Advanced Chronic Kidney disease (PRO-trACK project): a mixed-methods project protocol , 2017, BMJ Open.

[17]  N. Kearney,et al.  Evaluation of a mobile phone-based, advanced symptom management system (ASyMS©) in the management of chemotherapy-related toxicity , 2009, Supportive Care in Cancer.

[18]  J. Grant,et al.  Social support and self-care behaviors in individuals with heart failure: an integrative review. , 2014, International journal of nursing studies.

[19]  Rommel P. Bataclan,et al.  Cultural adaptation and validation of the Filipino version of Kidney Disease Quality of Life – Short Form (KDQOL‐SF version 1.3) , 2009, Nephrology.

[20]  Susan L. Gatto,et al.  Computer, Internet, and E-mail Use Among Older Adults: Benefits and Barriers , 2008 .

[21]  N. Aaronson,et al.  The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review , 1992 .

[22]  Serguei V. S. Pakhomov,et al.  Agreement between patient-reported symptoms and their documentation in the medical record. , 2008, The American journal of managed care.

[23]  Erik Riiskjær,et al.  Use of Patient-Reported Outcome (PRO) Measures at Group and Patient Levels: Experiences From the Generic Integrated PRO System, WestChronic , 2014, Interactive journal of medical research.

[24]  Ergonomic requirements for office work with visual display terminals ( VDTs ) — Part 11 : Guidance on usability , 1998 .

[25]  N. Charness,et al.  Designing for Older Adults , 2014 .

[26]  E. Friedman,et al.  Chronic kidney disease in the elderly: evaluation and management. , 2014, Clinical practice.

[27]  A. Slade,et al.  Measurement properties of patient-reported outcome measures (PROMs) used in adult patients with chronic kidney disease: A systematic review , 2016, BMJ Open.

[28]  N. Dendukuri,et al.  Proxy Reporting of Quality of Life Using the EQ-5D , 2002, Medical care.

[29]  D. Forman,et al.  Automated collection of quality-of-life data: a comparison of paper and computer touch-screen questionnaires. , 1999, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[30]  J. Penrod,et al.  Who cares? The size, scope, and composition of the caregiver support system. , 1995, The Gerontologist.

[31]  P. Bentler,et al.  Psychometric Properties of the Kidney Disease Quality of Life 36-Item Short-Form Survey (KDQOL-36) in the United States. , 2017, American journal of kidney diseases : the official journal of the National Kidney Foundation.

[32]  C. McIntyre,et al.  Collection of daily patient reported outcomes is feasible and demonstrates differential patient experience in chronic kidney disease , 2017, Hemodialysis international. International Symposium on Home Hemodialysis.

[33]  N. Aaronson,et al.  The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. , 2002, Journal of clinical epidemiology.

[34]  J. B. Brooke,et al.  SUS: a retrospective , 2013 .

[35]  E. Basch,et al.  Use of patient-reported outcomes to improve the predictive accuracy of clinician-reported adverse events. , 2011, Journal of the National Cancer Institute.

[36]  G. Eysenbach The Law of Attrition , 2005, Journal of medical Internet research.

[37]  Mi‐Kyung Song,et al.  Quality of Life of Patients with Advanced Chronic Kidney Disease Receiving Conservative Care without Dialysis , 2016, Seminars in dialysis.

[38]  J. B. Brooke,et al.  SUS: A 'Quick and Dirty' Usability Scale , 1996 .

[39]  A. Tong,et al.  Considerations and Challenges in Selecting Patient-Reported Outcome Measures for Clinical Trials in Nephrology. , 2017, Clinical journal of the American Society of Nephrology : CJASN.

[40]  Preethi Srinivas,et al.  User-Centered Evaluations with Older Adults: Testing the Usability of a Mobile Health System for Heart Failure Self-Management , 2017, Proceedings of the Human Factors and Ergonomics Society ... Annual Meeting. Human Factors and Ergonomics Society. Annual Meeting.

[41]  Leslie Lenert,et al.  Electronic and computer-generated patient questionnaires in standard care. , 2007, Baillière's Best Practice & Research : Clinical Rheumatology.

[42]  Jakob Nielsen,et al.  Determining Usability Test Sample Size , 2006 .

[43]  Deborah Schrag,et al.  Symptom Monitoring With Patient-Reported Outcomes During Routine Cancer Treatment: A Randomized Controlled Trial. , 2016, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[44]  Shirley Ann Becker,et al.  E-Government Visual Accessibility for Older Adult Users , 2004 .

[45]  Arthur D. Fisk,et al.  Designing for Older Adults: Principles and Creative Human Factors Approaches , 2004 .

[46]  原田 秀逸 私の computer 環境 , 1998 .

[47]  Y. A. Hong,et al.  Has the Digital Health Divide Widened? Trends of Health-Related Internet Use Among Older Adults From 2003 to 2011 , 2016, The journals of gerontology. Series B, Psychological sciences and social sciences.

[48]  Bernadette Szajna,et al.  Empirical evaluation of the revised technology acceptance model , 1996 .

[49]  Ritch Macefield,et al.  How to specify the participant group size for usability studies: a practitioner's guide , 2009 .

[50]  L. Kleinman,et al.  User Preferences for Computer Administration of Quality of Life Instruments , 2000 .

[51]  S. Vasuvattakul,et al.  Validity and Reliability of KDQOL-36 in Thai Kidney Disease Patient. , 2013, Value in health regional issues.

[52]  Cheryl Cott,et al.  The Electronic Patient Reported Outcome Tool: Testing Usability and Feasibility of a Mobile App and Portal to Support Care for Patients With Complex Chronic Disease and Disability in Primary Care Settings , 2016, JMIR mHealth and uHealth.

[53]  Ming-Cheng Wang,et al.  Psychometric Properties of the Kidney Disease Quality of Life–36 Questionnaire (KDQOL-36™) , 2016, Western journal of nursing research.

[54]  S. McLachlan,et al.  The application of computer touch-screen technology in screening for psychosocial distress in an ambulatory oncology setting. , 2002, European journal of cancer care.

[55]  M. D. de Jong,et al.  Retrospective vs. concurrent think-aloud protocols: Testing the usability of an online library catalogue , 2003 .

[56]  I. Dasgupta,et al.  Health-Related Quality of Life Impacts Mortality but Not Progression to End-Stage Renal Disease in Pre-Dialysis Chronic Kidney Disease: A Prospective Observational Study , 2016, PloS one.

[57]  Menno D. T. de Jong,et al.  Retrospective vs. concurrent think-aloud protocols: testing the usability of an online library catalogue , 2003, Behav. Inf. Technol..

[58]  L. Mayberry,et al.  Family Support, Medication Adherence, and Glycemic Control Among Adults With Type 2 Diabetes , 2012, Diabetes Care.

[59]  C. Douglas,et al.  Symptom burden in chronic kidney disease: a review of recent literature. , 2013, Journal of renal care.

[60]  D. Kyte,et al.  A patient-centred approach to measuring quality in kidney care: patient-reported outcome measures and patient-reported experience measures , 2017, Current opinion in nephrology and hypertension.

[61]  Jelena Mirkovic,et al.  Supporting Cancer Patients in Illness Management: Usability Evaluation of a Mobile App , 2014, JMIR mHealth and uHealth.

[62]  E. Saunders,et al.  MAXIMIZING COMPUTER USE AMONG THE ELDERLY IN RURAL SENIOR CENTERS , 2004 .

[63]  V. Bradley,et al.  Family support. , 1991, Children today.

[64]  Paul Smith,et al.  "Think aloud" and "Near live" usability testing of two complex clinical decision support tools , 2017, Int. J. Medical Informatics.

[65]  Josef Coresh,et al.  Chronic kidney disease , 2012, The Lancet.

[66]  G. Velikova,et al.  Development of an integrated electronic platform for patient self-report and management of adverse events during cancer treatment , 2017, Annals of oncology : official journal of the European Society for Medical Oncology.

[67]  T. Bakas,et al.  How Valid Are Family Proxy Assessments of Stroke Patients' Health-Related Quality of Life? , 2006, Stroke.

[68]  Bernhard Holzner,et al.  Implementation of computer-based quality-of-life monitoring in brain tumor outpatients in routine clinical practice. , 2010, Journal of pain and symptom management.

[69]  M. Jose,et al.  Validation of the IPOS-Renal Symptom Survey in Advanced Kidney Disease: A Cross-sectional Study. , 2018, Journal of pain and symptom management.

[70]  Joseph G. Pigeon,et al.  Statistics for Experimenters: Design, Innovation and Discovery , 2006, Technometrics.

[71]  Stefan Becker,et al.  Remote Usability Testing and Satisfaction with a Mobile Health Medication Inquiry System in CKD. , 2015, Clinical journal of the American Society of Nephrology : CJASN.

[72]  Per Sidenius,et al.  AmbuFlex: tele-patient-reported outcomes (telePRO) as the basis for follow-up in chronic and malignant diseases , 2016, Quality of Life Research.

[73]  M. Taal,et al.  Epidemiology and causes of chronic kidney disease , 2011, Medicine.

[74]  Rupa S. Valdez,et al.  Macroergonomic factors in the patient work system: examining the context of patients with chronic illness , 2017, Ergonomics.

[75]  D. Fairclough Design and analysis of quality of life studies in clinical trials , 2002, Quality of Life Research.

[76]  R. Fitzpatrick,et al.  Patients' health related quality of life before and after aesthetic surgery. , 1996, British journal of plastic surgery.

[77]  Gregg Skip Bailey,et al.  Iterative methodology and designer training in human-computer interface design , 1993, INTERCHI.

[78]  Jakob Nielsen,et al.  Usability engineering , 1997, The Computer Science and Engineering Handbook.

[79]  F. Wolfe,et al.  Listening to the patient: a practical guide to self-report questionnaires in clinical care. , 1999, Arthritis and rheumatism.

[80]  Arthur Zbrozek,et al.  Validation of electronic systems to collect patient-reported outcome (PRO) data-recommendations for clinical trial teams: report of the ISPOR ePRO systems validation good research practices task force. , 2013, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[81]  Barbara Weber,et al.  The Computer-based Health Evaluation Software (CHES): a software for electronic patient-reported outcome monitoring , 2012, BMC Medical Informatics and Decision Making.

[82]  R. Hays,et al.  Kidney Disease Quality of Life Short Form (KDQOL-SF™), Version 1.2 , 1996 .