AmbuFlex: tele-patient-reported outcomes (telePRO) as the basis for follow-up in chronic and malignant diseases

Quality of Life Research

Volumn 25, Issue 3, 2016, Pages 525-534

  Schougaard, Liv Marit Valen ^a   Larsen, Louise Pape ^a   Jessen, Anne ^a   Sidenius, Per ^b   Dorflinger, Liv ^c   de Thurah, Annette ^b,d   Hjollund, Niels Henrik ^a,b  

^a REGIONAL HOSPITAL WEST JUTLAND   (Denmark)

^b AARHUS UNIVERSITY HOSPITAL   (Denmark)

^c DANISH CANCER SOCIETY RESEARCH CENTER   (Denmark)

^d AARHUS UNIVERSITY   (Denmark)

Author keywords

Clinical practice; ePRO; Outpatient clinic; Outpatient follow up; Patient reported outcomes; telePRO

Indexed keywords

ALGORITHM; ARTICLE; CHRONIC DISEASE; DECISION SUPPORT SYSTEM; DENMARK; DIAGNOSIS RELATED GROUP; EPILEPSY; FOLLOW UP; GENERAL DEVICE; HEALTH STATUS; HOME; INFORMATION PROCESSING; NEOPLASM; OUTCOME ASSESSMENT; OUTPATIENT; OUTPATIENT CARE; PATIENT CARE; PATIENT REFERRAL; QUESTIONNAIRE; SYMPTOM ASSESSMENT; TELEPATIENT REPORTED OUTCOME; TELEPATIENT REPORTED OUTCOME SYSTEM; AMBULATORY CARE; HEALTH STATUS INDICATOR; HUMAN; PROCEDURES; QUALITY OF LIFE; TELEMEDICINE;

AMBULATORY CARE; CHRONIC DISEASE; DENMARK; FOLLOW-UP STUDIES; HEALTH STATUS INDICATORS; HUMANS; NEOPLASMS; PATIENT OUTCOME ASSESSMENT; QUALITY OF LIFE; SURVEYS AND QUESTIONNAIRES; SYMPTOM ASSESSMENT; TELEMEDICINE;

EID: 84958766335     PISSN: 09629343     EISSN: 15732649     Source Type: Journal    
DOI: 10.1007/s11136-015-1207-0     Document Type: Article

References (49)

1. Bennett, A. V., Jensen, R. E., & Basch, E. (2012). Electronic patient-reported outcome systems in oncology clinical practice. CA: A Cancer Journal for Clinicians,62(5), 336–347.
2. 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 Services Research, 13, 211-6963-13-211.
3. Johansen, M. A., Berntsen, G. K., Schuster, T., Henriksen, E., & Horsch, A. (2012). Electronic symptom reporting between patient and provider for improved health care service quality: A systematic review of randomized controlled trials. Part 2: Methodological quality and effects. Journal of Medical Internet Research,14(5), e126.
4. Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient-reported outcome measures on routine practice: A structured review. Journal of Evaluation in Clinical Practice,12(5), 559–568.
5. Snyder, C. F., Blackford, A. L., Wolff, A. C., Carducci, M. A., Herman, J. M., Wu, A. W., et al. (2013). Feasibility and value of PatientViewpoint: A web system for patient-reported outcomes assessment in clinical practice. Psycho-oncology,22(4), 895–901.
6. Velikova, G., Booth, L., Smith, A. B., Brown, P. M., Lynch, P., Brown, J. M., et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology,22(4), 714–724.
7. Valderas, J. M., Kotzeva, A., Espallargues, M., Guyatt, G., Ferrans, C. E., Halyard, M. Y., et al. (2008). The impact of measuring patient-reported outcomes in clinical practice: A systematic review of the literature. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation,17(2), 179–193.
8. US Department of Health and Human Services Food and Drug Administration. (2009). Guidance for industry: patient-reported outcome measures: Use in medical product development to support labeling claims. www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM193282.pdf.
9. Jensen, R. E., Snyder, C. F., Abernethy, A. P., Basch, E., Potosky, A. L., Roberts, A. C., et al. (2013). Review of electronic patient-reported outcomes systems used in cancer clinical care. Journal of Oncology Practice/American Society of Clinical Oncology,10(4), e215–222.
10. Johansen, M. A., Henriksen, E., Horsch, A., Schuster, T., & Berntsen, G. K. (2012). Electronic symptom reporting between patient and provider for improved health care service quality: A systematic review of randomized controlled trials. Part 1: State of the art. Journal of medical Internet research,14(5), e118.
11. Ayers, D. C., Zheng, H., & Franklin, P. D. (2013). Integrating patient-reported outcomes into orthopaedic clinical practice: Proof of concept from FORCE-TJR. Clinical Orthopaedics and Related Research,471(11), 3419–3425.
12. Santana, M. J., Feeny, D., Weinkauf, J., Nador, R., Kapasi, A., Jackson, K., et al. (2010). The use of patient-reported outcomes becomes standard practice in the routine clinical care of lung-heart transplant patients. Patient Related Outcome Measures,1, 93–105.
13. Haverman, L., Engelen, V., van Rossum, M. A., Heymans, H. S., & Grootenhuis, M. A. (2011). Monitoring health-related quality of life in paediatric practice: development of an innovative web-based application. BMC Pediatrics, 11, 3-2431-11-3.
14. Snyder, C. F., Jensen, R., Courtin, S. O., Wu, A. W., & Website for Outpatient QOL Assessment Research Network. (2009). PatientViewpoint: A website for patient-reported outcomes assessment. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation,18(7), 793–800.
15. Donaldson, M. S. (2008). Taking PROs and patient-centered care seriously: Incremental and disruptive ideas for incorporating PROs in oncology practice. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation,17(10), 1323–1330.
16. Hewlett, S., Kirwan, J., Pollock, J., Mitchell, K., Hehir, M., Blair, P. S., et al. (2005). Patient initiated outpatient follow up in rheumatoid arthritis: Six year randomised controlled trial. BMJ (Clinical research ed.),330(7484), 171.
17. Warrington, L., Absolom, K., & Velikova, G. (2015). Integrated care pathways for cancer survivors—A role for patient-reported outcome measures and health informatics. Acta Oncologica,54(5), 600–608.
18. Hjollund, N. H., Larsen, L. P., Biering, K., Johnsen, S. P., Riiskjaer, 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.
19. Snyder, C. F., Aaronson, N. K., Choucair, A. K., Elliott, T. E., Greenhalgh, J., Halyard, M. Y., et al. (2012). Implementing patient-reported outcomes assessment in clinical practice: A review of the options and considerations. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation,21(8), 1305–1314.
20. Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity–establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1–eliciting concepts for a new PRO instrument. Value in Health: The Journal of the International Society for Pharmacoeconomics and Outcomes Research,14(8), 967–977.
21. Fayers, P. M. (2008). Quality of Life. The assessment, analysis and interpretation of patient-reported outcomes (2nd ed.). New York: Wiley.
22. Drennan, J. (2003). Cognitive interviewing: Verbal data in the design and pretesting of questionnaires. Journal of Advanced Nursing,42(1), 57–63.
23. de Thurah, A., Maribo, T., & Stengaard-Pedersen, K. (2014). Patient self-assessment of flare in rheumatoid arthritis: Criterion and concurrent validity of the Flare instrument. Clinical Rheumatology. doi:10.1007/s10067-014-2849-y.
24. Maribo, T., de Thurah, A., & Stengaard-Pedersen, K. (2015). Patient-self assessment of flare in rheumatoid arthritis: Translation and reliability of the Flare instrument. Clinical Rheumatology. doi:10.1007/s10067-014-2848-z.
25. Snaith, R. P. (2003). The Hospital Anxiety and Depression Scale. Health and Quality of Life Outcomes,1, 29.
26. Heun, R., Burkart, M., Maier, W., & Bech, P. (1999). Internal and external validity of the WHO Well-Being Scale in the elderly general population. Acta Psychiatrica Scandinavica,99(3), 171–178.
27. Bjorner, J. B., Thunedborg, K., Kristensen, T. S., Modvig, J., & Bech, P. (1998). The danish SF-36 health survey: Translation and preliminary validity studies. Journal of Clinical Epidemiology,51(11), 991–999.
28. Olsen, L. R., Mortensen, E. L., & Bech, P. (2004). The SCL-90 and SCL-90R versions validated by item response models in a Danish community sample. Acta Psychiatrica Scandinavica,110(3), 225–229.
29. Johns, M. W. (1991). A new method for measuring daytime sleepiness: The Epworth sleepiness scale. Sleep,14(6), 540–545.
30. Johns, M. W. (1992). Reliability and factor analysis of the Epworth Sleepiness Scale. Sleep,15(4), 376–381.
31. Bruce, B., & Fries, J. F. (2003). The Stanford Health Assessment Questionnaire: A review of its history, issues, progress, and documentation. The Journal of Rheumatology,30(1), 167–178.
32. Fayers, P., Bottomley, A., EORTC Quality of Life Group, & Quality of Life Unit. (2002). Quality of life research within the EORTC-the EORTC QLQ-C30. European Organisation for Research and Treatment of Cancer. European Journal of Cancer (Oxford, England: 1990),38(Suppl 4), S125–S133.
33. Meyhoff, H. H., Hald, T., Nordling, J., Andersen, J. T., Bilde, T., & Walter, S. (1993). A new patient weighted symptom score system (DAN-PSS-1). Clinical assessment of indications and outcomes of transurethral prostatectomy for uncomplicated benign prostatic hyperplasia. Scandinavian Journal of Urology and Nephrology,27(4), 493–499.
34. Rosen, R. C., Cappelleri, J. C., Smith, M. D., Lipsky, J., & Pena, B. M. (1999). Development and evaluation of an abridged, 5-item version of the International Index of Erectile Function (IIEF-5) as a diagnostic tool for erectile dysfunction. International Journal of Impotence Research,11(6), 319–326.
35. Petersen, S. E., Bentzen, L., Emmertsen, K. J., Laurberg, S., Lundby, L., & Hoyer, M. (2014). Development and validation of a scoring system for late anorectal side-effects in patients treated with radiotherapy for prostate cancer. Radiotherapy and Oncology: Journal of the European Society for Therapeutic Radiology and Oncology,111(1), 94–99.
36. Juniper, E. F., O’Byrne, P. M., Guyatt, G. H., Ferrie, P. J., & King, D. R. (1999). Development and validation of a questionnaire to measure asthma control. The European Respiratory Journal,14(4), 902–907.
37. Herdman, M., Gudex, C., Lloyd, A., Janssen, M., Kind, P., Parkin, D., et al. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation,20(10), 1727–1736.
38. Broadbent, E., Petrie, K. J., Main, J., & Weinman, J. (2006). The brief illness perception questionnaire. Journal of Psychosomatic Research,60(6), 631–637.
39. Center for Telemedicin, Region Midtjylland (2013). AmbuFlex—Behovsstyrede ambulante patientforløb med spørgeskemabaseret klinisk selvmonitorering. Bilag: Patientperspektiv—interview med 13 epilepsipatienter. (In Danish).
40. Haverman, L., van Oers, H. A., Limperg, P. F., Hijmans, C. T., Schepers, S. A., Sint Nicolaas, S. M., et al. (2014). Implementation of electronic patient reported outcomes in pediatric daily clinical practice: The KLIK experience. Clinical Practice in Pediatric Psychology,2(1), 50–67.
41. Wu, A. W., Jensen, R. E., Salzberg, C., & Snyder. C. (2013). Advances in the use of patient reported outcome measures in electronic health records. Including case studies. http://www.pcori.org/assets/2013/11/PCORI-PRO-Workshop-EHR-Landscape-Review-111913.pdf.
42. Jensen, R. E., Rothrock, N. E., DeWitt, E. M., Spiegel, B., Tucker, C. A., Crane, H. M., et al. (2015). The role of technical advances in the adoption and integration of patient-reported outcomes in clinical care. Medical Care,53(2), 153–159.
43. Basch, E., Iasonos, A., McDonough, T., Barz, A., Culkin, A., Kris, M. G., et al. (2006). Patient versus clinician symptom reporting using the National Cancer Institute Common Terminology Criteria for Adverse Events: Results of a questionnaire-based study. The lancet Oncology,7(11), 903–909.
44. Danish Agency for Digitisation and PA Consulting Group. (2015). Analyse af patient rapporterede oplysninger (PRO). (In Danish, English summary). www.digst.dk/Digital-velfaerd/Initiativer-og-projekter/Digitale-spoergeskemaer-skal-inddrage-patienter-i-egen-behandling-over-hele-landet.
45. Santana, M. J., Haverman, L., Absolom, K., Takeuchi, E., Feeny, D., Grootenhuis, M., et al. (2015). Training clinicians in how to use patient-reported outcome measures in routine clinical practice. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation,24(7), 1707–1718.
46. Haverman, L., van Rossum, M. A., van Veenendaal, M., van den Berg, J. M., Dolman, K. M., Swart, J., et al. (2013). Effectiveness of a web-based application to monitor health-related quality of life. Pediatrics,131(2), e533–e543.
47. Kongsved, S. M., Basnov, M., Holm-Christensen, K., & Hjollund, N. H. (2007). Response rate and completeness of questionnaires: A randomized study of Internet versus paper-and-pencil versions. Journal of Medical Internet Research,9(3), e25.
48. Zuidgeest, M., Hendriks, M., Koopman, L., Spreeuwenberg, P., & Rademakers, J. (2011). A comparison of a postal survey and mixed-mode survey using a questionnaire on patients’ experiences with breast care. Journal of Medical Internet Research,13(3), e68.
49. Boyce, M. B., Browne, J. P., & Greenhalgh, J. (2014). The experiences of professionals with using information from patient-reported outcome measures to improve the quality of healthcare: A systematic review of qualitative research. BMJ Quality & Safety,23(6), 508–518.