UceWeb: a Web-based Collaborative Tool for Collecting and Sharing Quality of Life Data

OBJECTIVES This work aims at building a platform where quality-of-life data, namely utility coefficients, can be elicited not only for immediate use, but also systematically stored together with patient profiles to build a public repository to be further exploited in studies on specific target populations (e.g. cost/utility analyses). METHODS We capitalized on utility theory and previous experience to define a set of desirable features such a tool should show to facilitate sound elicitation of quality of life. A set of visualization tools and algorithms has been developed to this purpose. To make it easily accessible for potential users, the software has been designed as a web application. A pilot validation study has been performed on 20 atrial fibrillation patients. RESULTS A collaborative platform, UceWeb, has been developed and tested. It implements the standard gamble, time trade-off and rating-scale utility elicitation methods. It allows doctors and patients to choose the mode of interaction to maximize patients’ comfort in answering difficult questions. Every utility elicitation may contribute to the growth of the repository. CONCLUSION UceWeb can become a unique source of data allowing researchers both to perform more reliable comparisons among healthcare interventions and build statistical models to gain deeper insight into quality of life data.

[1]  John Spertus,et al.  Development and Validation of the Atrial Fibrillation Effect on QualiTy-of-Life (AFEQT) Questionnaire in Patients With Atrial Fibrillation , 2011, Circulation. Arrhythmia and electrophysiology.

[2]  W. Koyama,et al.  Significance of Measuring the Quality of Life in Health Evaluation , 2000, Methods of Information in Medicine.

[3]  L A Lenert,et al.  iMPACT3: Internet-Based Development and Administration of Utility Elicitation Protocols , 2002, Medical decision making : an international journal of the Society for Medical Decision Making.

[4]  F. Johnson Editorial: Moving the QALY forward or just stuck in traffic? , 2009, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[5]  Tsuguya Fukui,et al.  Utilities Measured by Rating Scale, Time Trade-off, and Standard Gamble: Review and Reference for Health Care Professionals , 2002, Journal of epidemiology.

[6]  Rebecca Herold,et al.  Standards for privacy of individually identifiable health information. Office of the Assistant Secretary for Planning and Evaluation, DHHS. Final rule. , 2001, Federal register.

[7]  M. Ryan,et al.  Methodological issues in the monetary valuation of benefits in healthcare , 2003, Expert review of pharmacoeconomics & outcomes research.

[8]  S. Waku,et al.  Significance of Brain Natriuretic Peptide Measurement as a Diagnostic Indicator of Cardiac Function , 2000, Methods of Information in Medicine.

[9]  Jessica S. Ancker,et al.  The Practice of Informatics: Design Features of Graphs in Health Risk Communication: A Systematic Review , 2006, J. Am. Medical Informatics Assoc..

[10]  Xin-She Yang,et al.  Introduction to Algorithms , 2021, Nature-Inspired Optimization Algorithms.

[11]  A Gafni,et al.  The standard gamble method: what is being measured and how it is interpreted. , 1994, Health services research.

[12]  M. Johannesson,et al.  An experimental test of question framing in health state utility assessment. , 1998, Health policy.

[13]  R. Klein,et al.  The Beaver Dam Health Outcomes study , 1993, Medical decision making : an international journal of the Society for Medical Decision Making.

[14]  Silvana Quaglini,et al.  From Decision to Shared-Decision: Introducing Patients' Preferences in Clinical Decision Analysis - A Case Study in Thromboembolic Risk Prevention , 2013, AIME.

[15]  Christopher McCabe,et al.  Visual Analogue Scales: do they have a role in the measurement of preferences for health states? , 2004 .

[16]  D. Fryback,et al.  HALYS and QALYS and DALYS, Oh My: similarities and differences in summary measures of population Health. , 2002, Annual review of public health.

[17]  Hilary F Ryder,et al.  Decision Analysis and Cost-effectiveness Analysis. , 2009, Seminars in spine surgery.

[18]  P. Kind,et al.  The use of QALYs in clinical and patient decision-making: issues and prospects. , 2009, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[19]  W Sumner,et al.  U-titer: a utility assessment tool. , 1991, Proceedings. Symposium on Computer Applications in Medical Care.

[20]  Jessica S. Ancker,et al.  Effect of Arrangement of Stick Figures on Estimates of Proportion in Risk Graphics , 2011, Medical decision making : an international journal of the Society for Medical Decision Making.

[21]  V. Vondra,et al.  Generic versus Disease-specific Instruments in Quality-of-life Assessment of Chronic Obstructive Pulmonary Disease , 2006, Methods of Information in Medicine.

[22]  S. Quaglini,et al.  Cost-Effectiveness and Cost-Utility of Beclomethasone/Formoterol versus Fluticasone Propionate/Salmeterol in Patients with Moderate to Severe Asthma , 2012, Clinical Drug Investigation.

[23]  Mary K. Goldstein,et al.  Multimedia Quality of Life Assessment: Advances with FLAIR , 2005, AMIA.

[24]  Jon Froehlich,et al.  Personal informatics in practice: improving quality of life through data , 2012, CHI Extended Abstracts.

[25]  K. Schulman,et al.  Cost utility of sequential adjuvant trastuzumab for HER2/Neu-positive breast cancer. , 2009, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[26]  J. Neumann,et al.  Theory of games and economic behavior , 1945, 100 Years of Math Milestones.