PROsaiq

An open source project enabling electronic Patient-reported Outcomes (ePRO) in day-to-day clincal practice using the MOSAIQ® oncology information system

Maintained by Thilo

PROsaiq Background

From PRO to ePRO

Patient-reported outcome (PRO) questionnaires measure a patient’s perception of the impact of a disease and its treatment1. PRO information enhances patient-centred care generally, but is particularly useful in oncology where side-effects from treatment are common2.

Initially PROs were almost exclusively collected in research3 using a classic pen and paper approach, however the advent of electronic PRO (ePRO) systems based on tablet or web technologies has allowed their use in routine oncological practice4, in palliative care5 and during cancer survivorship6.

Motivation

There is good evidence that ePRO collection improves the care of the individual patient7,8 and provides new opportunities for clinical research and population surveillance 9,10. The table below summarises these benefits.

The PROsaiq project aims to enable the benefits of ePRO in day-to-day clincal practice using the MOSAIQ® oncology information system. Concerns with ePRO systems identified by reseaerch11 have been addressed in the PROsaiq design, which is described in an open access JROI article (see coming soon).

ePRO Benefits

References

  1. Khadka, J., Gothwal, V.K., McAlinden, C., Lamoureux, E.L., Pesudovs, K., 2012. The importance of rating scales in measuring patient-reported outcomes. Health Qual Life Outcomes 10, 80. doi:10.1186/1477-7525-10-80 [Full text] ↩

  2. Lipscomb, J., Gotay, C.C., Snyder, C.F., 2007. Patient-reported outcomes in cancer: a review of recent research and policy initiatives. CA Cancer J Clin 57, 278–300. doi:10.3322/CA.57.5.278 [Full text] ↩

  3. Brundage, M., Bass, B., Davidson, J., Queenan, J., Bezjak, A., Ringash, J., Wilkinson, A., Feldman-Stewart, D., 2011. Patterns of reporting health-related quality of life outcomes in randomized clinical trials: implications for clinicians and quality of life researchers. Qual Life Res 20, 653–664. doi:10.1007/s11136-010-9793-3 [PubMed abstract] ↩

  4. Basch, E., Abernethy, A.P., 2011. Supporting clinical practice decisions with real-time patient-reported outcomes. J. Clin. Oncol. 29, 954–956. doi:10.1200/JCO.2010.33.2668 [Full text] ↩

  5. Antunes, B., Harding, R., Higginson, I.J., on behalf of EUROIMPACT, 2013. Implementing patient-reported outcome measures in palliative care clinical practice: A systematic review of facilitators and barriers. Palliat Med. doi:10.1177/0269216313491619 [Full text] ↩

  6. Ashley, L., Jones, H., Forman, D., Newsham, A., Brown, J., Downing, A., Velikova, G., Wright, P., 2011. 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 medical informatics and decision making 11, 66. [Full text] ↩

  7. Bennett, A.V., Jensen, R.E., Basch, E., 2012. Electronic patient-reported outcome systems in oncology clinical practice. CA Cancer J Clin 62, 337–347. doi:10.3322/caac.21150 [Full text] ↩

  8. Chen, J., Ou, L., Hollis, S.J., 2013. A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Serv Res 13, 211. doi:10.1186/1472-6963-13-211 [Full text] ↩

  9. Snyder, C.F., Aaronson, N.K., Choucair, A.K., Elliott, T.E., Greenhalgh, J., Halyard, M.Y., Hess, R., Miller, D.M., Reeve, B.B., Santana, M., 2012. Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations. Qual Life Res 21, 1305–1314. doi:10.1007/s11136-011-0054-x [PubMed abstract] ↩

  10. Wu, A.W., Kharrazi, H., Boulware, L.E., Snyder, C.F., 2013. Measure once, cut twice–adding patient-reported outcome measures to the electronic health record for comparative effectiveness research. J Clin Epidemiol 66, S12–20. doi:10.1016/j.jclinepi.2013.04.005 [Full text] ↩

  11. Jagsi, R., Chiang, A., Polite, B.N., Medeiros, B.C., McNiff, K., Abernethy, A.P., Zon, R., Loehrer, P.J., 2013. Qualitative Analysis of Practicing Oncologists’ Attitudes and Experiences Regarding Collection of Patient-Reported Outcomes. JOP 9, e290–e297. doi:10.1200/JOP.2012.000823 [Full text] ↩

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