Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
Quality of Life Research
Published in: Quality of Life Research 3/2016

Open Access 01-03-2016 | Special Section: PROs in Non-Standard Settings (by invitation only)

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

Authors: Liv Marit Valen Schougaard, Louise Pape Larsen, Anne Jessen, Per Sidenius, Liv Dorflinger, Annette de Thurah, Niels Henrik Hjollund

Published in: Quality of Life Research | Issue 3/2016

Login to get access

Abstract

Purpose

A tele-patient-reported outcome (telePRO) model includes outpatients’ reports of symptoms and health status from home before or instead of visiting the outpatient clinic. In the generic PRO system, AmbuFlex, telePRO is used to decide whether a patient needs an outpatient visit and is thus a tool for better symptom assessment, more patient-centred care, and more efficient use of resources. Specific PROs are developed for each patient group. In this paper we describe our experiences with large-scale implementations of telePRO as the basis for follow-up in chronic and malignant diseases using the generic PRO system AmbuFlex.

Methods

The AmbuFlex concept consists of three generic elements: PRO data collection, PRO-based automated decision algorithm, and PRO-based graphical overview for clinical decision support. Experiences were described with respect to these elements.

Results

By December 2015, AmbuFlex was implemented in nine diagnostic groups in Denmark. A total of 13,135 outpatients from 15 clinics have been individually referred. From epilepsy clinics, about 70 % of all their outpatients were referred. The response rates for the initial questionnaire were 81–98 %. Of 8256 telePRO-based contacts from epilepsy outpatients, up to 48 % were handled without other contact than the PRO assessment. Clinicians as well as patients reported high satisfaction with the system.

Conclusion

The results indicate that telePRO is feasible and may be recommended as the platform for follow-up in several patient groups with chronic and malignant diseases and with many consecutive outpatient contacts.
Literature
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.PubMedCentralCrossRefPubMed
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.CrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.CrossRef
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.CrossRef
8.
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.PubMedCentralCrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.CrossRef
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.CrossRef
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.CrossRef
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.CrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.CrossRef
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.CrossRef
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.CrossRefPubMed
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.
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRefPubMed
29.
Johns, M. W. (1991). A new method for measuring daytime sleepiness: The Epworth sleepiness scale. Sleep, 14(6), 540–545.PubMed
30.
Johns, M. W. (1992). Reliability and factor analysis of the Epworth Sleepiness Scale. Sleep, 15(4), 376–381.PubMed
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.PubMed
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.CrossRef
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.CrossRefPubMed
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.CrossRefPubMed
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.CrossRef
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.CrossRefPubMed
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.CrossRef
38.
Broadbent, E., Petrie, K. J., Main, J., & Weinman, J. (2006). The brief illness perception questionnaire. Journal of Psychosomatic Research, 60(6), 631–637.CrossRefPubMed
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.CrossRef
41.
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.CrossRefPubMed
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.CrossRefPubMed
44.
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.CrossRef
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.CrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.PubMedCentralCrossRefPubMed
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.CrossRef
Metadata
Title
AmbuFlex: tele-patient-reported outcomes (telePRO) as the basis for follow-up in chronic and malignant diseases
Authors
Liv Marit Valen Schougaard
Louise Pape Larsen
Anne Jessen
Per Sidenius
Liv Dorflinger
Annette de Thurah
Niels Henrik Hjollund
Publication date
01-03-2016
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 3/2016
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1207-0

Other articles of this Issue 3/2016

Quality of Life Research 3/2016 Go to the issue

Special Section: PROs in Non-Standard Settings (by invitation only)

Evaluating PROMIS® instruments and methods for patient-centered outcomes research: Patient and provider voices in a substance use treatment setting

Special Section: PROs in Non-Standard Settings (by invitation only)

Evaluating a new methodology for providing individualized feedback in healthcare on quality of life and its importance, using the WHOQOL-BREF in a community population

Special Section: PROs in Non-Standard Settings (by invitation only)

Patients’ and health professionals’ understanding of and preferences for graphical presentation styles for individual-level EORTC QLQ-C30 scores

Special Section: PROs in Non-Standard Settings (by invitation only)

Symptom clusters in women with breast cancer: an analysis of data from social media and a research study

Special Section: PROs in Non-Standard Settings (by invitation only)

Evaluation of point-of-care PRO assessment in clinic settings: integration, parallel-forms reliability, and patient acceptability of electronic QOL measures during clinic visits

OriginalPaper

Impact of Alzheimer’s disease on the family caregiver’s long-term quality of life: results from an ALSOVA follow-up study