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Published in: BMC Urology 1/2019

Open Access 01-12-2019 | Prostate Cancer | Research article

Agreement between patient reported outcomes and clinical reports after radical prostatectomy - a prospective longitudinal study

Authors: David Bock, Eva Angenete, Anders Bjartell, Jonas Hugosson, Gunnar Steineck, Sofie Walming, Peter Wiklund, Eva Haglind

Published in: BMC Urology | Issue 1/2019

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Abstract

Background

In clinical research information can be retrieved through various sources. The aim is to evaluate the agreement between answers in patient questionnaires and clinical reports in a study of patients after radical prostatectomy and patient characteristics associated with agreement between these two data sources.

Methods

In the prospective non-randomized longitudinal trial LAParoscopic Prostatectomy Robot Open (LAPPRO) 4003 patients undergoing radical prostatectomy at 14 centers in Sweden were followed. Analysis of agreement is made using a variety of methods, including the recently proposed Gwet’s AC1, which enables us to handle the limitations of Cohen’s Kappa where agreement depends on the underlying prevalence.

Results

The incidence of postoperative events was consistently reported higher by the patient compared with the clinical reports for all outcomes. Agreement regarding the absence of events (negative agreement) was consistently higher than agreement regarding events (positive agreement) for all outcome variables. Overall impression of agreement depends on which measure used for the assessment. The previously reported desirable properties of Gwet’s AC1 as well as the patient characteristics associated with agreement were confirmed.

Conclusion

The differences in incidence and agreement across the different variables and time points highlight the importance of carefully assessing which source of information to use in clinical research.

Trial registration

ISRCTN06393679 (www.​isrctn.​com). Date of registration: 07/02/2008. Retrospectively registered.
Literature
1.
go back to reference Harlow SD, Linet MS. Agreement between questionnaire data and medical records. The evidence for accuracy of recall. Am J Epidemiol. 1989;129(2):233–48.CrossRef Harlow SD, Linet MS. Agreement between questionnaire data and medical records. The evidence for accuracy of recall. Am J Epidemiol. 1989;129(2):233–48.CrossRef
2.
go back to reference de Groot, V., et al., How to measure comorbidity. A critical review of available methods. J Clin Epidemiol, 2003. 56(3): p. 221–9. de Groot, V., et al., How to measure comorbidity. A critical review of available methods. J Clin Epidemiol, 2003. 56(3): p. 221–9.
3.
go back to reference Jones MP, et al. Concordance between Sources of Morbidity Reports: Self-Reports and Medical Records. Front Pharmacol. 2011;2:16.CrossRef Jones MP, et al. Concordance between Sources of Morbidity Reports: Self-Reports and Medical Records. Front Pharmacol. 2011;2:16.CrossRef
4.
go back to reference Bush TL, et al. Self-report and medical record report agreement of selected medical conditions in the elderly. Am J Public Health. 1989;79(11):1554–6.CrossRef Bush TL, et al. Self-report and medical record report agreement of selected medical conditions in the elderly. Am J Public Health. 1989;79(11):1554–6.CrossRef
5.
go back to reference Haapanen N, et al. Agreement between questionnaire data and medical records of chronic diseases in middle-aged and elderly Finnish men and women. Am J Epidemiol. 1997;145(8):762–9.CrossRef Haapanen N, et al. Agreement between questionnaire data and medical records of chronic diseases in middle-aged and elderly Finnish men and women. Am J Epidemiol. 1997;145(8):762–9.CrossRef
6.
go back to reference Merkin SS, et al. Agreement of self-reported comorbid conditions with medical and physician reports varied by disease among end-stage renal disease patients. J Clin Epidemiol. 2007;60(6):634–42.CrossRef Merkin SS, et al. Agreement of self-reported comorbid conditions with medical and physician reports varied by disease among end-stage renal disease patients. J Clin Epidemiol. 2007;60(6):634–42.CrossRef
7.
go back to reference Corser W, et al. Concordance between comorbidity data from patient self-report interviews and medical record documentation. BMC Health Serv Res. 2008;8:85.CrossRef Corser W, et al. Concordance between comorbidity data from patient self-report interviews and medical record documentation. BMC Health Serv Res. 2008;8:85.CrossRef
8.
go back to reference De-loyde KJ, et al. Which information source is best? Concordance between patient report, clinician report and medical records of patient co-morbidity and adjuvant therapy health information. J Eval Clin Pract. 2015;21(2):339–46.CrossRef De-loyde KJ, et al. Which information source is best? Concordance between patient report, clinician report and medical records of patient co-morbidity and adjuvant therapy health information. J Eval Clin Pract. 2015;21(2):339–46.CrossRef
9.
go back to reference Phillips KA, et al. Agreement between self-reported breast cancer treatment and medical records in a population-based breast Cancer family registry. J Clin Oncol. 2005;23(21):4679–86.CrossRef Phillips KA, et al. Agreement between self-reported breast cancer treatment and medical records in a population-based breast Cancer family registry. J Clin Oncol. 2005;23(21):4679–86.CrossRef
10.
go back to reference Wallerstedt A, et al. Short-term results after robot-assisted laparoscopic radical prostatectomy compared to open radical prostatectomy. Eur Urol. 2015;67(4):660–70.CrossRef Wallerstedt A, et al. Short-term results after robot-assisted laparoscopic radical prostatectomy compared to open radical prostatectomy. Eur Urol. 2015;67(4):660–70.CrossRef
11.
go back to reference Steineck G, et al. Symptom documentation in cancer survivors as a basis for therapy modifications. Acta Oncol. 2002;41(3):244–52.CrossRef Steineck G, et al. Symptom documentation in cancer survivors as a basis for therapy modifications. Acta Oncol. 2002;41(3):244–52.CrossRef
12.
go back to reference Wallihan DB, Stump TE, Callahan CM. Accuracy of self-reported health services use and patterns of care among urban older adults. Med Care. 1999;37(7):662–70.CrossRef Wallihan DB, Stump TE, Callahan CM. Accuracy of self-reported health services use and patterns of care among urban older adults. Med Care. 1999;37(7):662–70.CrossRef
13.
go back to reference Raina P, et al. Agreement between self-reported and routinely collected health-care utilization data among seniors. Health Serv Res. 2002;37(3):751–74.CrossRef Raina P, et al. Agreement between self-reported and routinely collected health-care utilization data among seniors. Health Serv Res. 2002;37(3):751–74.CrossRef
14.
go back to reference Clegg LX, et al. Comparison of self-reported initial treatment with medical records: results from the prostate cancer outcomes study. Am J Epidemiol. 2001;154(6):582–7.CrossRef Clegg LX, et al. Comparison of self-reported initial treatment with medical records: results from the prostate cancer outcomes study. Am J Epidemiol. 2001;154(6):582–7.CrossRef
15.
go back to reference Zhu K, et al. Comparison of self-report data and medical records data: results from a case-control study on prostate cancer. Int J Epidemiol. 1999;28(3):409–17.CrossRef Zhu K, et al. Comparison of self-report data and medical records data: results from a case-control study on prostate cancer. Int J Epidemiol. 1999;28(3):409–17.CrossRef
16.
go back to reference Okura Y, et al. Agreement between self-report questionnaires and medical record data was substantial for diabetes, hypertension, myocardial infarction and stroke but not for heart failure. J Clin Epidemiol. 2004;57(10):1096–103.CrossRef Okura Y, et al. Agreement between self-report questionnaires and medical record data was substantial for diabetes, hypertension, myocardial infarction and stroke but not for heart failure. J Clin Epidemiol. 2004;57(10):1096–103.CrossRef
17.
go back to reference Barber J, et al. Measuring morbidity: self-report or health care records? Fam Pract. 2010;27(1):25–30.CrossRef Barber J, et al. Measuring morbidity: self-report or health care records? Fam Pract. 2010;27(1):25–30.CrossRef
18.
go back to reference Cicchetti DV, Feinstein AR. High agreement but low kappa: II. Resolving the paradoxes. J Clin Epidemiol. 1990;43(6):551–8.CrossRef Cicchetti DV, Feinstein AR. High agreement but low kappa: II. Resolving the paradoxes. J Clin Epidemiol. 1990;43(6):551–8.CrossRef
19.
go back to reference Zaki R, et al. Statistical methods used to test for agreement of medical instruments measuring continuous variables in method comparison studies: a systematic review. PLoS One. 2012;7(5).CrossRef Zaki R, et al. Statistical methods used to test for agreement of medical instruments measuring continuous variables in method comparison studies: a systematic review. PLoS One. 2012;7(5).CrossRef
20.
go back to reference Wongpakaran N, et al. A comparison of Cohen’s kappa and Gwet’s AC1 when calculating inter-rater reliability coefficients: a study conducted with personality disorder samples. BMC Med Res Methodol. 2013;(13):61. Wongpakaran N, et al. A comparison of Cohen’s kappa and Gwet’s AC1 when calculating inter-rater reliability coefficients: a study conducted with personality disorder samples. BMC Med Res Methodol. 2013;(13):61.
21.
go back to reference Cohen J. A coefficient of agreement for nominal scales. Educ Psychol Meas. 1960;20(1):37–46.CrossRef Cohen J. A coefficient of agreement for nominal scales. Educ Psychol Meas. 1960;20(1):37–46.CrossRef
22.
go back to reference Feinstein AR, Cicchetti DV. High agreement but low kappa. 1. The problems of theTwo paradoxes. J Clin Epidemiol. 1990;43(6):543–9.CrossRef Feinstein AR, Cicchetti DV. High agreement but low kappa. 1. The problems of theTwo paradoxes. J Clin Epidemiol. 1990;43(6):543–9.CrossRef
23.
go back to reference Gwet KL. Kappa statistic is not satisfactory for assessing the extent of agreement between raters. Statistical Methods for Inter-Rater Reliability Assessment. 2002;1(6):1–6. Gwet KL. Kappa statistic is not satisfactory for assessing the extent of agreement between raters. Statistical Methods for Inter-Rater Reliability Assessment. 2002;1(6):1–6.
24.
go back to reference Gwet KL. Handbook of inter-rater reliability. 4 ed. In: Advanced analytics; 2010. Gwet KL. Handbook of inter-rater reliability. 4 ed. In: Advanced analytics; 2010.
25.
go back to reference Tanner MA, Young MA. Modeling Agreement Among Raters. J Am Stat Assoc. 1985;80(389):175–80.CrossRef Tanner MA, Young MA. Modeling Agreement Among Raters. J Am Stat Assoc. 1985;80(389):175–80.CrossRef
26.
go back to reference Agresti A. Categorical data analysis. 2 ed. Wiley series in probability and mathematical statistics. Hoboken, New Jersey: Wiley-Interscience; 2002. Agresti A. Categorical data analysis. 2 ed. Wiley series in probability and mathematical statistics. Hoboken, New Jersey: Wiley-Interscience; 2002.
27.
go back to reference Thorsteinsdottir T, et al. LAPPRO: a prospective multicentre comparative study of robot-assisted laparoscopic and retropubic radical prostatectomy for prostate cancer. Scand J Urol Nephrol. 2011;45(2):102–12.CrossRef Thorsteinsdottir T, et al. LAPPRO: a prospective multicentre comparative study of robot-assisted laparoscopic and retropubic radical prostatectomy for prostate cancer. Scand J Urol Nephrol. 2011;45(2):102–12.CrossRef
28.
go back to reference Gospodarowicz MK, Brierly JD, Wittekind C. TNM classification of malignant Tumours: Wiley-Blackwell; 2017. Gospodarowicz MK, Brierly JD, Wittekind C. TNM classification of malignant Tumours: Wiley-Blackwell; 2017.
29.
go back to reference Johansson E, et al. Long-term quality-of-life outcomes after radical prostatectomy or watchful waiting: the Scandinavian prostate Cancer Group-4 randomised trial. Lancet Oncol. 2011;12(9):891–9.CrossRef Johansson E, et al. Long-term quality-of-life outcomes after radical prostatectomy or watchful waiting: the Scandinavian prostate Cancer Group-4 randomised trial. Lancet Oncol. 2011;12(9):891–9.CrossRef
30.
go back to reference Wallerstedt Lantz A, et al. 90-day readmission after radical prostatectomy - a prospective comparison between robot-assisted and open surgery. Scand J Urol. 2018; to appear. Wallerstedt Lantz A, et al. 90-day readmission after radical prostatectomy - a prospective comparison between robot-assisted and open surgery. Scand J Urol. 2018; to appear.
31.
go back to reference Bock D, et al. Habits and self-assessed quality of life, negative intrusive thoughts and depressed mood in patients with prostate cancer: a longitudinal study. Scand J Urol. 2017;51(5):353–9.CrossRef Bock D, et al. Habits and self-assessed quality of life, negative intrusive thoughts and depressed mood in patients with prostate cancer: a longitudinal study. Scand J Urol. 2017;51(5):353–9.CrossRef
32.
go back to reference Skoogh J, et al. 'A no means no'--measuring depression using a single-item question versus hospital anxiety and depression scale (HADS-D). Ann Oncol. 2010;21(9):1905–9.CrossRef Skoogh J, et al. 'A no means no'--measuring depression using a single-item question versus hospital anxiety and depression scale (HADS-D). Ann Oncol. 2010;21(9):1905–9.CrossRef
33.
go back to reference Team RC. R: a language and environment for statistical computing. R Foundation for statistical computing. Vienna, Austria; 2018. Team RC. R: a language and environment for statistical computing. R Foundation for statistical computing. Vienna, Austria; 2018.
34.
go back to reference Mackinnon A. A spreadsheet for the calculation of comprehensive statistics for the assessment of diagnostic tests and inter-rater agreement. Comput Biol Med. 2000;30(3):127–34.CrossRef Mackinnon A. A spreadsheet for the calculation of comprehensive statistics for the assessment of diagnostic tests and inter-rater agreement. Comput Biol Med. 2000;30(3):127–34.CrossRef
35.
go back to reference Skinner KM, et al. Concordance between respondent self-reports and medical records for chronic conditions: experience from the veterans health study. J Ambul Care Manage. 2005;28(2):102–10.CrossRef Skinner KM, et al. Concordance between respondent self-reports and medical records for chronic conditions: experience from the veterans health study. J Ambul Care Manage. 2005;28(2):102–10.CrossRef
36.
go back to reference Katz JN, et al. Can comorbidity be measured by questionnaire rather than medical record review? Med Care. 1996;34(1):73–84.CrossRef Katz JN, et al. Can comorbidity be measured by questionnaire rather than medical record review? Med Care. 1996;34(1):73–84.CrossRef
37.
go back to reference Mansson A, et al. Neutral third party versus treating institution for evaluating quality of life after radical cystectomy. Eur Urol. 2004;46(2):195–9.CrossRef Mansson A, et al. Neutral third party versus treating institution for evaluating quality of life after radical cystectomy. Eur Urol. 2004;46(2):195–9.CrossRef
38.
go back to reference Litwin, M.S., et al., Differences in urologist and patient assessments of health related quality of life in men with prostate cancer: results of the CaPSURE database. J Urol, 1998. 159(6): p. 1988–92.CrossRef Litwin, M.S., et al., Differences in urologist and patient assessments of health related quality of life in men with prostate cancer: results of the CaPSURE database. J Urol, 1998. 159(6): p. 1988–92.CrossRef
39.
go back to reference Sonn GA, et al. Differing perceptions of quality of life in patients with prostate Cancer and their doctors. J Urol. 2009;182:2296–302.CrossRef Sonn GA, et al. Differing perceptions of quality of life in patients with prostate Cancer and their doctors. J Urol. 2009;182:2296–302.CrossRef
40.
go back to reference Svaboe Steinsvik EA, et al. Do perceptions of adverse events differ between patients and physicians? Findings from a randomized, controlled trial of radical treatment for prostate Cancer. J Urol. 2010;184:525–31.CrossRef Svaboe Steinsvik EA, et al. Do perceptions of adverse events differ between patients and physicians? Findings from a randomized, controlled trial of radical treatment for prostate Cancer. J Urol. 2010;184:525–31.CrossRef
Metadata
Title
Agreement between patient reported outcomes and clinical reports after radical prostatectomy - a prospective longitudinal study
Authors
David Bock
Eva Angenete
Anders Bjartell
Jonas Hugosson
Gunnar Steineck
Sofie Walming
Peter Wiklund
Eva Haglind
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Urology / Issue 1/2019
Electronic ISSN: 1471-2490
DOI
https://doi.org/10.1186/s12894-019-0467-3

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