Skip to main content
Top
Published in: Health and Quality of Life Outcomes 1/2015

Open Access 01-12-2015 | Short report

Strategies to use tablet computers for collection of electronic patient-reported outcomes

Authors: Kara Schick-Makaroff, Anita Molzahn

Published in: Health and Quality of Life Outcomes | Issue 1/2015

Login to get access

Abstract

Background

Mobile devices are increasingly being used for data collection in research. However, many researchers do not have experience in collecting data electronically. Hence, the purpose of this short report was to identify issues that emerged in a study that incorporated electronic capture of patient-reported outcomes in clinical settings, and strategies used to address the issues.

Findings

The issues pertaining to electronic patient-reported outcome data collection were captured qualitatively during a study on use of electronic patient-reported outcomes in two home dialysis units. Fifty-six patients completed three surveys on tablet computers, including the Kidney Disease Quality of Life-36, the Edmonton Symptom Assessment Scale, and a satisfaction measure. Issues that arose throughout the research process were recorded during ethics reviews, implementation process, and data collection. Four core issues emerged including logistics of technology, security, institutional and financial support, and electronic design.

Conclusions

Although use of mobile devices for data collection has many benefits, it also poses new challenges for researchers. Advance consideration of possible issues that emerge in the process, and strategies that can help address these issues, may prevent disruption and enhance validity of findings.
Literature
1.
go back to reference Basch E, Goldfarb S. Electronic patient-reported outcomes for collecting sensitive information from patients. J Support Oncol. 2009;7:98–9.PubMed Basch E, Goldfarb S. Electronic patient-reported outcomes for collecting sensitive information from patients. J Support Oncol. 2009;7:98–9.PubMed
2.
go back to reference Dupont A, Wheeler J, Herndon II JE, Coan A, Zafar SY, Hood L, et al. Use of tablet personal computers for sensitive patient-reported information. J Support Oncol. 2009;7:91–7.PubMed Dupont A, Wheeler J, Herndon II JE, Coan A, Zafar SY, Hood L, et al. Use of tablet personal computers for sensitive patient-reported information. J Support Oncol. 2009;7:91–7.PubMed
3.
go back to reference Smith SK, Rowe K, Abernethy AP. Use of an electronic patient-reported outcome measurement system to improve distress management in oncology. Palliat Support Care. 2014;12:69–73.PubMedCentralPubMedCrossRef Smith SK, Rowe K, Abernethy AP. Use of an electronic patient-reported outcome measurement system to improve distress management in oncology. Palliat Support Care. 2014;12:69–73.PubMedCentralPubMedCrossRef
4.
go back to reference Zbrozek A, Hebert J, Gogates G, Thorell R, Dell C, Molsen E, 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. Value Health. 2013;16:48–489.CrossRef Zbrozek A, Hebert J, Gogates G, Thorell R, Dell C, Molsen E, 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. Value Health. 2013;16:48–489.CrossRef
5.
go back to reference Abernethy AP, Ahmad A, Zafar SY, Wheeler JL, Reese JB, Lynerly HK. Electronic patient-reported data capture as a foundation of rapid learning cancer care. Med Care. 2010;48 Suppl 1:S32–8.PubMedCrossRef Abernethy AP, Ahmad A, Zafar SY, Wheeler JL, Reese JB, Lynerly HK. Electronic patient-reported data capture as a foundation of rapid learning cancer care. Med Care. 2010;48 Suppl 1:S32–8.PubMedCrossRef
6.
go back to reference Bennett AV, Jensen RE, Basch E. Electronic patient-reported outcome systems in oncology clinical practice. CA-Cancer J Clin. 2012;62:337–47.PubMedCrossRef Bennett AV, Jensen RE, Basch E. Electronic patient-reported outcome systems in oncology clinical practice. CA-Cancer J Clin. 2012;62:337–47.PubMedCrossRef
7.
go back to reference Chang Y-J, Chang C-H, Peng C-L, Wu H-C, Lin H-C, Wang J-Y, et al. Measurement equivalence and feasibility of the EORTC QLQ-PR25: paper-and-pencil versus touch-screen administration. Health Qual Life Out. 2014;12:1–10. Chang Y-J, Chang C-H, Peng C-L, Wu H-C, Lin H-C, Wang J-Y, et al. Measurement equivalence and feasibility of the EORTC QLQ-PR25: paper-and-pencil versus touch-screen administration. Health Qual Life Out. 2014;12:1–10.
8.
go back to reference Coons SJ. ePRO systems validation: Clearly defining the roles of clinical trial teams and ePRO system providers. Value Health. 2013;16:457–8.PubMedCrossRef Coons SJ. ePRO systems validation: Clearly defining the roles of clinical trial teams and ePRO system providers. Value Health. 2013;16:457–8.PubMedCrossRef
9.
go back to reference Coons SJ, Gwaltney CJ, Hays RD, Lundy JJ, Sloan JA, Revicki DA, 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. Value Health. 2009;12:419–29.PubMedCrossRef Coons SJ, Gwaltney CJ, Hays RD, Lundy JJ, Sloan JA, Revicki DA, 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. Value Health. 2009;12:419–29.PubMedCrossRef
10.
go back to reference Dy SM, Roy J, Ott GE, McHale M, Kennedy C, Kutner JS, et al. Tell Us™: A web-based tool for improving communication among patients, families, and providers in hospice and palliative care through systematic data specification, collection and use. J Pain Symptom. 2011;42:526–34.CrossRef Dy SM, Roy J, Ott GE, McHale M, Kennedy C, Kutner JS, et al. Tell Us™: A web-based tool for improving communication among patients, families, and providers in hospice and palliative care through systematic data specification, collection and use. J Pain Symptom. 2011;42:526–34.CrossRef
11.
go back to reference Espallargues M, Valderas JM, Alonso J. Provision of feedback on perceived health status to health care professionals: a systematic review of its impact. Med Care. 2000;38:175–86.PubMedCrossRef Espallargues M, Valderas JM, Alonso J. Provision of feedback on perceived health status to health care professionals: a systematic review of its impact. Med Care. 2000;38:175–86.PubMedCrossRef
12.
go back to reference Holzner B, Giesinger JM, Pinggera J, Zugal S, Schöpf F, Oberguggenberger AS, et al. The computer-based health evaluation software (CHES): a software for electronic patient-reported outcome monitoring. BMC Med Inform Decis Mak. 2012;12:126–37.PubMedCentralPubMedCrossRef Holzner B, Giesinger JM, Pinggera J, Zugal S, Schöpf F, Oberguggenberger AS, et al. The computer-based health evaluation software (CHES): a software for electronic patient-reported outcome monitoring. BMC Med Inform Decis Mak. 2012;12:126–37.PubMedCentralPubMedCrossRef
13.
go back to reference Snyder CF, Aaronson NK, Choucair AK, Elliott TE, Greenhalgh J, Halyard MH, et al. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Qual Life Res. 2012;21:1305–14.PubMedCrossRef Snyder CF, Aaronson NK, Choucair AK, Elliott TE, Greenhalgh J, Halyard MH, et al. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Qual Life Res. 2012;21:1305–14.PubMedCrossRef
14.
go back to reference Schick-Makaroff K, Molzahn A. Use of iPads to assess health-related quality of life: a feasibility study in outpatient home dialysis clinics. CJKHD 2014, 1. doi:10.1186/s40697-014-0022-9 Schick-Makaroff K, Molzahn A. Use of iPads to assess health-related quality of life: a feasibility study in outpatient home dialysis clinics. CJKHD 2014, 1. doi:10.1186/s40697-014-0022-9
15.
go back to reference Ashley L, Jones H, Forman D, Newsham A, Brown J, Downing A, et al. Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. BMC Med Inform Decis Mak. 2011;11:1–10.CrossRef Ashley L, Jones H, Forman D, Newsham A, Brown J, Downing A, et al. Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. BMC Med Inform Decis Mak. 2011;11:1–10.CrossRef
16.
go back to reference Ashley L, Jones H, Thomas J, Newsham A, Downing A, Morris E, et al. Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. J Med Internet Res. 2013;15:e230.PubMedCentralPubMedCrossRef Ashley L, Jones H, Thomas J, Newsham A, Downing A, Morris E, et al. Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. J Med Internet Res. 2013;15:e230.PubMedCentralPubMedCrossRef
17.
go back to reference Brundage M, Blazeby J, Revicki D, Bass B, de Vet H, Duffy H, et al. Patient-reported outcomes in randomized clinical trials: development of ISOQOL reporting standards. Qual Life Res. 2013;22:1161–75.PubMedCentralPubMedCrossRef Brundage M, Blazeby J, Revicki D, Bass B, de Vet H, Duffy H, et al. Patient-reported outcomes in randomized clinical trials: development of ISOQOL reporting standards. Qual Life Res. 2013;22:1161–75.PubMedCentralPubMedCrossRef
18.
go back to reference Calvert M, Blazeby J, Altman DG, Revicki DA, Moher D, Brundage MD, et al. Reporting of patient-reported outcomes in randomized trials. JAMA. 2013;309:814–22.PubMedCrossRef Calvert M, Blazeby J, Altman DG, Revicki DA, Moher D, Brundage MD, et al. Reporting of patient-reported outcomes in randomized trials. JAMA. 2013;309:814–22.PubMedCrossRef
19.
go back to reference Reeve BB, Wyrwich KW, Wu AW, Velikova G, Terwee CB, Snyder CF, et al. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Qual Life Res. 2013;22:1889–905.PubMedCrossRef Reeve BB, Wyrwich KW, Wu AW, Velikova G, Terwee CB, Snyder CF, et al. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Qual Life Res. 2013;22:1889–905.PubMedCrossRef
20.
go back to reference Basch E, Iasonos A, Barz A, Culkin A, Kris MG, Artz D, et al. Long-term toxicity monitoring via electronic patient-reported outcomes in patients receiving chemotherapy. JCO. 2007;25:5374–80.CrossRef Basch E, Iasonos A, Barz A, Culkin A, Kris MG, Artz D, et al. Long-term toxicity monitoring via electronic patient-reported outcomes in patients receiving chemotherapy. JCO. 2007;25:5374–80.CrossRef
21.
go back to reference Davison SN, Jhandri GS, Johnson JA. Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: a simple assessment of symptom burden. Kidney Int. 2006;69:1621–5.PubMedCrossRef Davison SN, Jhandri GS, Johnson JA. Cross-sectional validity of a modified Edmonton symptom assessment system in dialysis patients: a simple assessment of symptom burden. Kidney Int. 2006;69:1621–5.PubMedCrossRef
22.
go back to reference Hays RD, Kallich JD, Mapes DL, Coons SJ, Carter WB. Development of the Kidney Disease Quality of Life (KDQOL) instrument. Qual Life Res. 1994;3:329–38.PubMedCrossRef Hays RD, Kallich JD, Mapes DL, Coons SJ, Carter WB. Development of the Kidney Disease Quality of Life (KDQOL) instrument. Qual Life Res. 1994;3:329–38.PubMedCrossRef
24.
go back to reference Thorne S. Interpretive Description. Walnut Creek, CA: Left Coast Press; 2008. Thorne S. Interpretive Description. Walnut Creek, CA: Left Coast Press; 2008.
25.
go back to reference Sandelowski M, Barroso J. Classifying the findings in qualitative studies. Qual Health Res. 2003;13:905–23.PubMedCrossRef Sandelowski M, Barroso J. Classifying the findings in qualitative studies. Qual Health Res. 2003;13:905–23.PubMedCrossRef
Metadata
Title
Strategies to use tablet computers for collection of electronic patient-reported outcomes
Authors
Kara Schick-Makaroff
Anita Molzahn
Publication date
01-12-2015
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2015
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-014-0205-1

Other articles of this Issue 1/2015

Health and Quality of Life Outcomes 1/2015 Go to the issue