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Hjollund NH, Larsen LP, Biering K, et al. Use of Patient-Reported Outcome (PRO) Measures at Group and Patient Levels: Experiences From the Generic Integrated PRO System, WestChronic. Interact J Med Res. 2014;3(1):e5doi: 10.2196/ijmr.2885.
Hjollund, N. H., Larsen, L. P., Biering, K., Johnsen, S. P., Riiskjær, E., & Schougaard, L. M. (2014). Use of Patient-Reported Outcome (PRO) Measures at Group and Patient Levels: Experiences From the Generic Integrated PRO System, WestChronic. Interactive journal of medical research, 3(1), e5. https://doi.org/10.2196/ijmr.2885
Hjollund, Niels Henrik Ingvar, et al. "Use of Patient-Reported Outcome (PRO) Measures at Group and Patient Levels: Experiences From the Generic Integrated PRO System, WestChronic." Interactive journal of medical research vol. 3,1 (2014): e5. doi: https://doi.org/10.2196/ijmr.2885
Hjollund NH, Larsen LP, Biering K, Johnsen SP, Riiskjær E, Schougaard LM. Use of Patient-Reported Outcome (PRO) Measures at Group and Patient Levels: Experiences From the Generic Integrated PRO System, WestChronic. Interact J Med Res. 2014 Feb 11;3(1):e5. doi: 10.2196/ijmr.2885. PMID: 24518281; PMCID: PMC3936283.
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Interact J Med Res. 2014 Feb 11;3(1):e5. doi: 10.2196/ijmr.2885.

Use of Patient-Reported Outcome (PRO) Measures at Group and Patient Levels: Experiences From the Generic Integrated PRO System, WestChronic.

Interactive journal of medical research

Niels Henrik Ingvar Hjollund, Louise Pape Larsen, Karin Biering, Soren Paaske Johnsen, Erik Riiskjær, Liv Marit Schougaard

Affiliations

  1. WestChronic, Regional Hospital West Jutland, Herning, Denmark. [email protected].

PMID: 24518281 PMCID: PMC3936283 DOI: 10.2196/ijmr.2885

Abstract

BACKGROUND: Patient-reported outcome (PRO) measures may be used at a group level for research and quality improvement and at the individual patient level to support clinical decision making and ensure efficient use of resources. The challenges involved in implementing PRO measures are mostly the same regardless of aims and diagnostic groups and include logistic feasibility, high response rates, robustness, and ability to adapt to the needs of patient groups and settings. If generic PRO systems can adapt to specific needs, advanced technology can be shared between medical specialties and for different aims.

OBJECTIVE: We describe methodological, organizational, and practical experiences with a generic PRO system, WestChronic, which is in use among a range of diagnostic groups and for a range of purposes.

METHODS: The WestChronic system supports PRO data collection, with integration of Web and paper PRO questionnaires (mixed-mode) and automated procedures that enable adherence to implementation-specific schedules for the collection of PRO. For analysis, we divided functionalities into four elements: basic PRO data collection and logistics, PRO-based clinical decision support, PRO-based automated decision algorithms, and other forms of communication. While the first element is ubiquitous, the others are optional and only applicable at a patient level. Methodological and organizational experiences were described according to each element.

RESULTS: WestChronic has, to date, been implemented in 22 PRO projects within 18 diagnostic groups, including cardiology, neurology, rheumatology, nephrology, orthopedic surgery, gynecology, oncology, and psychiatry. The aims of the individual projects included epidemiological research, quality improvement, hospital evaluation, clinical decision support, efficient use of outpatient clinic resources, and screening for side effects and comorbidity. In total 30,174 patients have been included, and 59,232 PRO assessments have been collected using 92 different PRO questionnaires. Response rates of up to 93% were achieved for first-round questionnaires and up to 99% during follow-up. For 6 diagnostic groups, PRO data were displayed graphically to the clinician to facilitate flagging of important symptoms and decision support, and in 5 diagnostic groups PRO data were used for automatic algorithm-based decisions.

CONCLUSIONS: WestChronic has allowed the implementation of all proposed protocol for data collection and processing. The system has achieved high response rates, and longitudinal attrition is limited. The relevance of the questions, the mixed-mode principle, and automated procedures has contributed to the high response rates. Furthermore, development and implementation of a number of approaches and methods for clinical use of PRO has been possible without challenging the generic property. Generic multipurpose PRO systems may enable sharing of automated and efficient logistics, optimal response rates, and other advanced options for PRO data collection and processing, while still allowing adaptation to specific aims and patient groups.

Keywords: Internet; data collection; decision support systems; health care economics and organizations; health education; longitudinal studies; outcome assessment; patient-reported outcomes; quality improvement; questionnaires

References

  1. J Med Internet Res. 2011 Sep 27;13(3):e68 - PubMed
  2. J Bone Joint Surg Br. 2011 Jul;93(7):867-75 - PubMed
  3. Midwifery. 2012 Dec;28(6):784-90 - PubMed
  4. J Support Oncol. 2012 Jul-Aug;10(4):143-8 - PubMed
  5. BMJ. 2013 Jan 28;346:f167 - PubMed
  6. J Med Internet Res. 2012 Oct 03;14(5):e118 - PubMed
  7. BMJ. 2005 Jan 22;330(7484):171 - PubMed
  8. CA Cancer J Clin. 2012 Sep-Oct;62(5):337-47 - PubMed
  9. Qual Life Res. 2008 Mar;17(2):179-93 - PubMed
  10. Qual Life Res. 2012 Oct;21(8):1305-14 - PubMed
  11. Qual Life Res. 2010 May;19(4):539-49 - PubMed
  12. Qual Life Res. 2009 Feb;18(1):125-36 - PubMed
  13. Cancer J. 2011 Jul-Aug;17(4):211-8 - PubMed
  14. J Psychosom Res. 2009 Mar;66(3):245-7 - PubMed
  15. Qual Life Res. 2008 Dec;17(10):1323-30 - PubMed
  16. Inform Health Soc Care. 2009 Jan;34(1):53-8 - PubMed
  17. Value Health. 2009 Jun;12(4):419-29 - PubMed
  18. J Bone Joint Surg Br. 1996 Mar;78(2):185-90 - PubMed
  19. Qual Saf Health Care. 2010 Dec;19(6):e6 - PubMed
  20. J Bone Joint Surg Br. 1998 Jan;80(1):63-9 - PubMed
  21. Qual Life Res. 2009 Feb;18(1):115-23 - PubMed
  22. Diabetes Technol Ther. 2006 Oct;8(5):576-86 - PubMed
  23. Qual Life Res. 2008 Dec;17(10):1297-302 - PubMed
  24. J Med Internet Res. 2007 Sep 30;9(3):e25 - PubMed
  25. BMJ. 2002 Jun 15;324(7351):1417 - PubMed
  26. PLoS One. 2012;7(11):e49268 - PubMed
  27. J Med Internet Res. 2012 Oct 03;14(5):e126 - PubMed
  28. Lancet Oncol. 2006 Nov;7(11):903-9 - PubMed
  29. J Natl Cancer Inst. 2011 Dec 21;103(24):1808-10 - PubMed
  30. Psychooncology. 2013 Apr;22(4):895-901 - PubMed
  31. Health Qual Life Outcomes. 2003 Aug 01;1:29 - PubMed
  32. Scand J Public Health. 2011 Jul;39(7 Suppl):68-71 - PubMed
  33. Value Health. 2011 Mar-Apr;14(2):316-21 - PubMed
  34. Qual Life Res. 2013 Oct;22(8):1889-905 - PubMed
  35. Clin Epidemiol. 2014 Jan 30;6:61-70 - PubMed
  36. Patient Educ Couns. 2009 Sep;76(3):336-40 - PubMed

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