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Published in: Quality of Life Research 3/2016

Open Access 01-03-2016 | 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

Authors: W. Kuijpers, J. M. Giesinger, A. Zabernigg, T. Young, E. Friend, I. M. Tomaszewska, N. K. Aaronson, B. Holzner

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

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Abstract

Purpose

To investigate patients’ and health professionals’ understanding of and preferences for different graphical presentation styles for individual-level EORTC QLQ-C30 scores.

Methods

We recruited cancer patients (any treatment and diagnosis) in four European countries and health professionals in the Netherlands. Using a questionnaire, we assessed objective and self-rated understanding of QLQ-C30 scores and preferences for five presentation styles (bar and line charts, with or without color coding, and a heat map).

Results

In total, 548 patients and 227 health professionals participated. Eighty-three percent of patients and 85 % of professionals self-rated the graphs as very or quite easy to understand; this did not differ between graphical presentation styles. The mean percentage of correct answers to questions objectively assessing understanding was 59 % in patients, 78 % in medical specialists, and 74 % in other health professionals. Objective understanding did not differ between graphical formats in patients. For non-colored charts, 49.8 % of patients did not have a preference. Colored bar charts (39 %) were preferred over heat maps (20 %) and colored line charts (12 %). Medical specialists preferred heat maps (46 %) followed by non-colored bar charts (19 %), whereas these charts were equally valued by other health professionals (both 32 %).

Conclusion

The substantial discrepancy between participants’ high self-rated and relatively low objective understanding of graphical presentation of PRO results highlights the need to provide sufficient guidance when presenting such results. It may be appropriate to adapt the presentation of PRO results to individual preferences. This could be facilitated when PROs are administered and presented to patients and health professionals electronically.
Literature
1.
go back to reference Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.CrossRefPubMed Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.CrossRefPubMed
2.
go back to reference Kotronoulas, G., Kearney, N., Maguire, R., Harrow, A., Di Domenico, D., Croy, S., & MacGillivray, S. (2014). What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. Journal of Clinical Oncology, JCO, 2013(2053), 5948. Kotronoulas, G., Kearney, N., Maguire, R., Harrow, A., Di Domenico, D., Croy, S., & MacGillivray, S. (2014). What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. Journal of Clinical Oncology, JCO, 2013(2053), 5948.
3.
go back to reference Valderas, J., Kotzeva, A., Espallargues, M., Guyatt, G., Ferrans, C., Halyard, M., et al. (2008). The impact of measuring patient-reported outcomes in clinical practice: A systematic review of the literature. Quality of Life Research, 17(2), 179–193.CrossRefPubMed Valderas, J., Kotzeva, A., Espallargues, M., Guyatt, G., Ferrans, C., Halyard, M., et al. (2008). The impact of measuring patient-reported outcomes in clinical practice: A systematic review of the literature. Quality of Life Research, 17(2), 179–193.CrossRefPubMed
4.
go back to reference Klinkhammer-Schalke, M., Koller, M., Steinger, B., Ehret, C., Ernst, B., Wyatt, J. C., et al. (2012). Direct improvement of quality of life using a tailored quality of life diagnosis and therapy pathway: Randomised trial in 200 women with breast cancer. British Journal of Cancer, 106(5), 826–838.PubMedCentralCrossRefPubMed Klinkhammer-Schalke, M., Koller, M., Steinger, B., Ehret, C., Ernst, B., Wyatt, J. C., et al. (2012). Direct improvement of quality of life using a tailored quality of life diagnosis and therapy pathway: Randomised trial in 200 women with breast cancer. British Journal of Cancer, 106(5), 826–838.PubMedCentralCrossRefPubMed
5.
go back to reference Velikova, G., Booth, L., Smith, A. B., Brown, P. M., Lynch, P., Brown, J. M., & Selby, P. J. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology, 22(4), 714–724.CrossRefPubMed Velikova, G., Booth, L., Smith, A. B., Brown, P. M., Lynch, P., Brown, J. M., & Selby, P. J. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology, 22(4), 714–724.CrossRefPubMed
6.
go back to reference 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. 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.
7.
8.
go back to reference Brundage, M., Feldman-Stewart, D., Leis, A., Bezjak, A., Degner, L., Velji, K., et al. (2005). Communicating quality of life information to cancer patients: A study of six presentation formats. Journal of Clinical Oncology, 23(28), 6949–6956.CrossRefPubMed Brundage, M., Feldman-Stewart, D., Leis, A., Bezjak, A., Degner, L., Velji, K., et al. (2005). Communicating quality of life information to cancer patients: A study of six presentation formats. Journal of Clinical Oncology, 23(28), 6949–6956.CrossRefPubMed
9.
go back to reference McNair, A. G., Brookes, S. T., Davis, C. R., Argyropoulos, M., & Blazeby, J. M. (2010). Communicating the results of randomized clinical trials: Do patients understand multidimensional patient-reported outcomes? Journal of Clinical Oncology, 28(5), 738–743.CrossRefPubMed McNair, A. G., Brookes, S. T., Davis, C. R., Argyropoulos, M., & Blazeby, J. M. (2010). Communicating the results of randomized clinical trials: Do patients understand multidimensional patient-reported outcomes? Journal of Clinical Oncology, 28(5), 738–743.CrossRefPubMed
10.
go back to reference Brundage, M., Bass, B., Jolie, R., & Foley, K. (2011). A knowledge translation challenge: Clinical use of quality of life data from cancer clinical trials. Quality of Life Research, 20(7), 979–985.CrossRefPubMed Brundage, M., Bass, B., Jolie, R., & Foley, K. (2011). A knowledge translation challenge: Clinical use of quality of life data from cancer clinical trials. Quality of Life Research, 20(7), 979–985.CrossRefPubMed
11.
go back to reference 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, 21(8), 1305–1314.CrossRefPubMed 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, 21(8), 1305–1314.CrossRefPubMed
12.
go back to reference Abernethy, A. P., Zafar, S. Y., Uronis, H., Wheeler, J. L., Coan, A., Rowe, K., et al. (2010). Validation of the Patient Care Monitor (Version 2.0): A review of system assessment instrument for cancer patients. Journal of Pain and Symptom Management, 40(4), 545–558.CrossRefPubMed Abernethy, A. P., Zafar, S. Y., Uronis, H., Wheeler, J. L., Coan, A., Rowe, K., et al. (2010). Validation of the Patient Care Monitor (Version 2.0): A review of system assessment instrument for cancer patients. Journal of Pain and Symptom Management, 40(4), 545–558.CrossRefPubMed
13.
go back to reference Erharter, A., Giesinger, J., Kemmler, G., Schauer-Maurer, G., Stockhammer, G., Muigg, A., et al. (2010). Implementation of computer-based quality-of-life monitoring in brain tumor outpatients in routine clinical practice. Journal of Pain and Symptom Management, 39(2), 219–229.CrossRefPubMed Erharter, A., Giesinger, J., Kemmler, G., Schauer-Maurer, G., Stockhammer, G., Muigg, A., et al. (2010). Implementation of computer-based quality-of-life monitoring in brain tumor outpatients in routine clinical practice. Journal of Pain and Symptom Management, 39(2), 219–229.CrossRefPubMed
14.
go back to reference Snyder, C. F., Jensen, R., Courtin, S. O., Wu, A. W., Network, W., & Website for Outpatient QOL Assessment Research Network. (2009). PatientViewpoint: A website for patient-reported outcomes assessment. Quality of Life Research, 18(7), 793–800.PubMedCentralCrossRefPubMed Snyder, C. F., Jensen, R., Courtin, S. O., Wu, A. W., Network, W., & Website for Outpatient QOL Assessment Research Network. (2009). PatientViewpoint: A website for patient-reported outcomes assessment. Quality of Life Research, 18(7), 793–800.PubMedCentralCrossRefPubMed
15.
go back to reference Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85(5), 365–376.CrossRefPubMed Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85(5), 365–376.CrossRefPubMed
17.
go back to reference Davis, C., McNair, A., Brigic, A., Clarke, M., Brookes, S., Thomas, M., & Blazeby, J. (2010). Optimising methods for communicating survival data to patients undergoing cancer surgery. European Journal of Cancer, 46(18), 3192–3199.CrossRefPubMed Davis, C., McNair, A., Brigic, A., Clarke, M., Brookes, S., Thomas, M., & Blazeby, J. (2010). Optimising methods for communicating survival data to patients undergoing cancer surgery. European Journal of Cancer, 46(18), 3192–3199.CrossRefPubMed
18.
go back to reference Brundage, M. D., Smith, K. C., Little, E. A., Bantug, E. T., & Snyder, C. F. (2015). Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation. Quality of Life Research, 1–16. Brundage, M. D., Smith, K. C., Little, E. A., Bantug, E. T., & Snyder, C. F. (2015). Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation. Quality of Life Research, 1–16.
19.
go back to reference Chapman, K., Abraham, C., Jenkins, V., & Fallowfield, L. (2003). Lay understanding of terms used in cancer consultations. Psycho-Oncology, 12(6), 557–566.CrossRefPubMed Chapman, K., Abraham, C., Jenkins, V., & Fallowfield, L. (2003). Lay understanding of terms used in cancer consultations. Psycho-Oncology, 12(6), 557–566.CrossRefPubMed
20.
go back to reference Pieterse, A. H., Jager, N. A., Smets, E., & Henselmans, I. (2013). Lay understanding of common medical terminology in oncology. Psycho-Oncology, 22(5), 1186–1191.CrossRefPubMed Pieterse, A. H., Jager, N. A., Smets, E., & Henselmans, I. (2013). Lay understanding of common medical terminology in oncology. Psycho-Oncology, 22(5), 1186–1191.CrossRefPubMed
21.
go back to reference Jaspers, M. W., Steen, T., van Den Bos, C., & Geenen, M. (2004). The think aloud method: A guide to user interface design. International Journal of Medical Informatics, 73(11), 781–795.CrossRefPubMed Jaspers, M. W., Steen, T., van Den Bos, C., & Geenen, M. (2004). The think aloud method: A guide to user interface design. International Journal of Medical Informatics, 73(11), 781–795.CrossRefPubMed
Metadata
Title
Patients’ and health professionals’ understanding of and preferences for graphical presentation styles for individual-level EORTC QLQ-C30 scores
Authors
W. Kuijpers
J. M. Giesinger
A. Zabernigg
T. Young
E. Friend
I. M. Tomaszewska
N. K. Aaronson
B. Holzner
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/s11136-015-1107-3

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